A new year is upon us. A strong blistering winter storm dumped 17 inches of snow on the area, and really glad we didn’t need to drive in it. Had a nice and mellow holiday season. Not sure what this new year is going to be like but who does.
On our last visit to Petoskey, to meet with Bobbi’s oncologist, she talked to us about her last scan. The doctor read over the report and said there were a couple of spots on her lungs, which we knew there was from past scans, which would need monitoring. No big deal, just have to keep our eyes on them. Bobbi shared that regardless what the future held she was done with any future chemotherapy or surgeries. The doctor said she had wondered what she would do. When asked about the next follow up, 3 or 6 months, Bobbi said 6 months. Doctor agreed. She said it concerned her as a oncologist, but understood as a person. Bobbi was put through the wringer in 2018. We’ve talked hours upon hours about every possible scenario and what she wanted. If any bad news awaited us what could be done about it anyways? She’s gone through every possible treatment. 8 weeks of chemo with Gemzar and Abraxane, a full Whipple procedure, 6 weeks of daily radiation with chemo, to follow that up with 4 more additional months of chemo. At one time she could barely walk, was in severe pain with bile duct closing, and then the stent falling out. Not to mention all of her hair falling out. 2018 was enough! Now it’s about quality over quantity with the hopes that there will be both. All lab numbers are good so left the meeting feeling pretty optimistic.
Somethings didn’t sit right in my thoughts. I wasn’t sure what it was. We celebrated her ringing the bell after her last chemo treatment, but there was just something that didn’t quite feel right. Usually we are given a copy of scan results. Kept my thoughts to myself and counted our blessings.
Because we do keep copies of everything Bobbi decided to stop at the hospital here in the Soo and went to the records office for the scan paperwork. Reading it was somewhat disheartening. There were more than “a couple” of lung spots. There were five. One had grown larger since the last scan. The radiologist also wrote she suspected possibly that her pancreatic cancer was metastasized, meaning it had spread. Lungs and liver usually are impacted first.
Was a lot to take in. We’ve been told a number of times, with her having spots on her liver, that they believed her cancer had spread, to later learn that it hadn’t. The back and forth with the maybe it has and maybe it hasn’t was hell. How does one wrap their thinking around it? You may have years to live, or a much shorter time. Her oncologist didn’t mention any of this to us about the radiology suspecting Mets. Which we understand. It was the holidays, nothing was written in stone, so why get all worked up over something that could very well be nothing at all. Bobbi told her she wouldn’t pursue future treatments either way so that might have played a role too.
It certainly lead us to some serious discussions between us and family. At first we were a little dumbfounded and shocked that the word “Mets” was used, as well as learning one spot was growing. Do we keep the news to ourselves and just deal with it without concerning loved ones and friends? Why get everyone worked up for no reason if it turns out to be nothing?
I felt, at first, that we should have another scan in 3 months, instead of 6, so we’d have more solid information. If it was going to be a long period of thinking the worse, then it might be better to know ASAP. At least then we’d know exactly how to position things in our head. Bobbi agreed, though preferred to have it checked after 6 months.
I agreed. I always said that whatever her wishes are they would come first. So that’s where we stand on things at the moment. In May she’ll have another scan and we’ll go from there.
Depression started to sink in. Sleepless nights, every thought consumed with WTF?
Then it seemed like a real change took place. We really started to feel blessed with where things are. We had a super nice holiday. And our interaction feels a lot like when we first met 25 some years ago. Loving and laughing a lot and not spending time concentrating on the maybe this or maybe that. Bobbi never had time to bake or cook before, as a cardiac surgical nurse there were long hours and on call times. Now, she’s doing both and whipping out some wonderful meals! We sit at the kitchen table more, together, and really are enjoying each and every day.
Of course we’re concerned if it’s metastatic. But all the worry in the world isn’t going to change the outcome. Life comes at you full speed and is pretty raw and in your face at times. You wonder how your going to deal with it, worry, and it takes away the time you could be trying to enjoy whatever time life is lived. We are at that point. When I was going through all my heart procedures (close to 30 surgeries) it was like a bad dream. Then Bobbi was diagnosed with cancer. Here we were, not having a dime to our name, having our savings evaporated from bills, no home, and totally emotionally and physically beat down. I wasn’t going to suddenly get better and to top it off placed on medical palliative care.
Nobody knows what their tomorrow’s hold. Today, we have a beautiful apartment, everything we need in it, a good car, and are closer than we’ve ever been as a couple. Our kids and grandchildren are healthy (with a new grandchild on the way!) and we’re alive. We are not going to let our appreciation for the good become weighed down by the tough. Don’t get me wrong, we still have a boat load of tough situations. It took every dime to eventually have this beautiful woman ring the bell at her last chemotherapy treatment. We wouldn’t had made it that far without the love and support of our family and friends. The “you are loved” gathering came out of no where and truly helped save her life! Thousands of miles were traveled. Getting a Bobbi to that finish line with the chemo was a mission that there was no compromise on. Today we are thankful for seeing the sun rise in the morning and settle in the evening. We live on about $60 a week once insurances, bills, and medicine co-pays are done. Often wondering how we’re going to find quarters to do laundry. But somehow, today, we manage. Is it stressful? You bet you it is. But we try and put things in perspective. We deal with 24-hours at a time. That’s it. When either of us have a rough day physically we say we can get through today. That’s all we worry about. Period. Would it be nice to be able to plan a trip to see the kids, or see family in lower Michigan, yes. But you can’t squeeze water from a rock and reality is reality. We don’t mope around and have a pity party. We have life and it’s working today! We’ve been doing some drawing and watercolor artwork and really have been enjoying it. Bobbi mentioned to me the other day that she finally feels like she’s retired and it was a long time in coming! Hair is coming back nicely. She is by far one of the best things my life has ever experienced! I look back the last 25 years and just smile at all the things we’ve shared. Motorcycle adventures, children, trips, mostly just enjoying the other’s company.
Bobbi would probably share in this update but is soundly sleeping comfortably. Right now it’s 4:15am, have stayed up all night writing this and taking in the quietness. Have earplugs in so I don’t hear the pumping of the darn oxygen machine, cause that’ll drive you nuts more than anything else, and a cup of coffee.
Today, or I should say yesterday, was a good day! Binge watching seasons of Game of Thrones for the 4th time, and slowly recovering from the missed field goal the Bears screwed up last Sunday in the playoffs! What’s helped a lot is turning off the round the clock world news! Seeing the government on this “shutdown” is a head scratcher. The less fortunate lives are impacted the most, as always, but nothing we can do about it. Maybe someday the politicians will work for the people… ya right, seriously when has it ever been any different? The love of family and friends have continued to pour in! The area up here in Upper Michigan is really starting to feel like home for me. We miss Wisconsin terribly but I’m so glad that Bobbi is close to her mother and siblings. I’ve grown to love them like my own. Each of them are special in their own unique ways.
Well, enough with this book! Just wanted to update everyone and let them know we are still fighting the good fight and happy to be alive. I received a very special book from Cinneidi, our 16-year-old granddaughter, a few weeks ago. She had different pictures of us made into a book and it’s now one of my most prized possessions. Kids are doing great! Sean and Jen doing an amazing job with Cinneidi and Aiden, and working hard, reconnected with Adam and Julie to learn their soon going to have a son, Shay went scuba diving on the east coast of Australia, and we’re simply living life on life’s terms. Thank you for the read!
It’s been close to two months since I rang the bell after my last chemo. Three weeks ago I had another scan and things looked promising. They hesitate to tell a person they are cancer free, but I’m believing so. On the follow up appointment with the Doctor a week later we discussed how often people follow up with scans and appointments after chemo. Some 3 months, some six months. I chose the six month. I can’t live my life living and worrying scan to scan. If things turn south then it is what it is. All the worry in the world won’t change anything. It concerned the Doctor and Mike some but they each get it. Everything that can be done medically has been completed. Next week I’m having the port taken out. Feeling good and getting stronger each day. Taking daily walks with my mother and enjoying this a lot. Getting prepared for the holidays and glad I’m around for it! Wasn’t too sure about it a year ago. After going through an experience like this each holiday is appreciated more. We have our tree and lights up outside, they look really pretty.
“Faces and voices of cancer” organization want to do a interview on the 6th, in a couple days, and I’m glad to be able to help others fighting their battle with my story. I believe hope comes in many forms and if it’ll help another with that then mission accomplished.
Hoping everyone has a nice Christmas and great new year! We have lots of snow here in Upper Michigan, even built a small snowman on Saturday. Got a hat and scarf for it, just need a bit more snow, which I’m sure we’ll get. Not really sure what our Christmas Day plans are, but have awhile yet to plan. Just very grateful for life and being here for it!
Mike-Wishing the same to everyone in having a great holiday season! My gratefulness to everyone is hard to put into words. My admiration towards Bobbi is beyond words as well! Seeing her getting stronger each day is calming. Knowing the scan was good, and blood work, very assuring. What a wild ride it was. Seems so surreal now. I knew she’d be a monarch again, beautiful and shining. But it certainly took a serious toll on her. She fought Twisty and decimated it. Happy that she’s decided to have her port taken out. Doesn’t need a reminder what yesterday’s battles were. We’ll never forget them that’s for sure!
Thank you again to everyone! Have a Merry Christmas and a peaceful new year. Never give up your fight in life, no matter what the odds and so called “statistics” are! Everyone is unique and gifted in some way.
October 6, 2018
Bobbi- What a 15 month whirlwind this has been. Chemo Abraxane, Gemzar, hair loss, no eyebrows, eyelashes, completely stripped of recognition. The only control I had was to shave my head when it was literally coming out in clumps. I remember walking from the bed to the kitchen and not sure if I would make it to the nearest chair. Having to sit on the floor of the shower because of not being strong enough to stand. My first thoughts when told I had pancreatic cancer were I will not be around in 6 months, a deadly diagnosis. How I felt then I did not care if I had a time limit on life. When on the brink the human spirit seems to dig deep within to survive. There was a chance that chemo would shrink my tumor and a Whipple surgery would be possible. How can one embrace a huge surgical procedure? I questioned if this would even occur. Next scan liver spots now facing possible metastatic disease, the lifeline was shorter. At time of biopsy spots are gone. WTH . More chemo. I have literally gone through health hell. When told Chemo indefinitely I was done, no more. The day after my decision the surgeon called, said scans were reviewed and I was a candidate for surgery. How would I endure this when I could barely stand? I trained starting with baby steps. Then I was walking a mile, at times having to sit on the side of the road to make it back. I had surgery March 27th and was out of the hospital March 30th. Was I ready to leave the hospital? I put on a warriors face and said I can and will do this, though was unsure. I walked and never stopped. One month after surgery I rode a radiation bus daily for 30 trips along with chemo, with my brother Steve fighting his cancer battle. That period of time we grew even closer. His wife Debbie always with encouraging love.
After my first chemo and radiation treatment, after the surgery, was spent in a motel getting sick for 12 hours. Probably should have gone to the hospital but was seeing doctor next day anyway. I was told I would have 4 more cycles of single agent chemo after chemo radiation was complete. Finally had about an inch of hair and lost it twice so I guess three times the charm. Remember pulling at my hair on day 14 and was shocked when none fell out. Maybe I will luck out this time. By this point the once revered hair mattered little. Never thought I would be writing at this point. Didn’t expect to make it through the ordeal but am so looking forward to my final chemo. Ring the bell. I did not fight alone there are too many champions behind me. My sister Lori and husband Jim came to many appointments and comforted me more times than can be counted. Remember being at her house when I was extremely ill lying in bed together, just being sisters. Our son Sean and wife Jen, who made many trips from Wisconsin with the grandkids were a HUGE motivation. Weekly messages with positive inspiring words from Jens Mother helped. Sharing calls with Shay, our Daughter halfway across the world going to school was a blessing.
My sister Chrissy always called after each treatment meant so much. Visits with brother Mike kept me cheerful and laughing. Meeting with my mother each week, with some really deep talks kept me grounded and feeling positive. All the friends in Wausau were in my corner! The doctors, nurses, social workers, financial assistant coordinator, the nutritionist who provided me with protein drinks and vitamins. The Hope Lodge in Grand Rapids was amazing, along with Surgeon Dr. Jill Onesti. Oncologist Dr. Elena Copolla, Becky Tom NP, and Dr. Boike, Andra, Wendy, from Karmanos were true miracle workers! I would have perished without everyone’s help. When humanity seems to be at all time lows there are people out there.
And of course Mike, my husband. Whose wise words of “worry does not change outcomes” will always stick in my mind when I get too far into the future with it. He was my trainer and coach. And he always told others we were oath keepers not caretakers when the word was brought up. We battled his serious health issues for 7 years, with me doing the same. Guess we do things big at our house, cancer and heart disease. Know his endurance was limited but he made meals, shopped, laundry, shaved my head (and his own), and many sleepless nights looking over me while I slept. Drove 180 miles once a week for over a year. Called hospitals, doctors, loved me, massaged my aching muscles and bones, the list goes on.
I just know today I am here and will spend my remaining days appreciating life. It is not what you have but who you have in your lives. I certainly didn’t fight this alone.
October 11th, 2018
The day finally arrived. We were in Petoskey just a couple days ago, I was the speaker at a survivors meeting, and was unsure what to share. I knew it was a good sign to be speaking at such a meeting. It really dawned on me that I was in fact now a survivor! I still had one more treatment and it’s all I could think about! And today was the day! Lori and Jim met us there, I had the first nurse I started out with, Melissa, and in the exact same chair and room of the first chemo treatment. After the treatment it felt like a ton of weight was lifted off my shoulders. There were many hugs, and when I rang the bell joy never felt before went through my body! We celebrated by going out to a wonderful deli. It feels so good to be alive.
The ride here was stormy and windy. The ride back the same until a giant rainbow appeared the closer we got to home. It was an amazing sight. The timing of it was like an out of the body experience.
There will still be future scans and doctor appointments. No big deal. Today was a good day, no… it was a great day!
October 9th, 2018
Mike- Bobbi spoke at a survivors group today, sharing her story. Many had tears. From barely being able to walk last Christmas to the woman today is a total transformation. So many thanks to everyone! During the talk it sunk in that we were very close to the end of this journey. I was so proud of her using her story to now helping others with their journey.
October 11th, 2018
Seeing Bobbi ring the bell today, having completed all treatments, was an unexplainable feeling. What a long 15 months it’s been. Over 10,000 miles traveled and we are finally done. Lori and Jim met us at the infusion center which was extra nice. Lori presented her with beautiful flowers and the entire experience felt surreal. When we arrived home, and alone we hugged and tears rolled down both our cheeks. Her writings did an excellent job sharing what took place. Glad we have a happy ending. So very proud of her. So grateful for this new chapter. So appreciative for all who have stood by our side with compassion and love. Thank you. Thank you Karmanos!
Today I’am a survivor! To all reading this I hope this inspires you in your battles. The worse odds and statistics matter little. Fight like you’ve never have before and lean on the lives around you. Don’t worry about tomorrow, just get through the one second, minute, hour, and the day you are in.
A picture Cinneidi brought up on visit! Thank you!
Hey cancer… SCREW YOU! One year ago today I learned you were in my pancreas. You took my hair, parts of my stomach, pancreas, gall bladder, small intestine (Whipple). We battled. 26 rounds of chemo, and 30 radiation treatments, I’m still standing! You tried to break me, bury me, and destroy me. Not today you monster!
6 chemo treatments to go and the bell at the infusion center will ring!
We haven’t posted for awhile because of tunnel vision on the finish line. I certainly didn’t fight this alone! Family, friends, doctors, nurses, 3 different hospitals, and answered prayers battled this storm with me! Thank you!
Yes indeed, one year ago today we learned that Bobbi has cancer. Neither knew what was to come or to be expected. The fight is still on, we’re not going to lift our foot off its neck for one second. What a year. Strange how three words ‘you have cancer’, that took 3 seconds, can change a life so quickly!
A month ago we were sitting at Lori and Jim’s cabin in Detour and talking about how nice of a summer its been. Out of the blue Bobbi says “Best summer ever!” Everyone there was silent for a second. How in the world could this be the best ever for her? We talked about it and she shared because she was still alive and the lens she sees through, with cancer, changed her perception on life. Little things meant more. She’s always found the silver lining in difficult situations but it’s more than that. I’ve witnessed her taking this fight on and never known a stronger person in my entire life. This last month seeing the kids coming up here was a real blessing and exactly what she needed.
Awhile back someone asked me about caregiving. I was like WTF? We don’t use that word. We call it ‘oath keeping’. When we married our vows contained through sickness and health… never once has it been caregiving. With each having our health challenges both have been oath keepers. You don’t just stick around during the good times and hit the road during the tough. What kind of marriage would that be? Nobody ever promised life would be fair and easy. You just have to suit up and swing away. You win some, you lose some, and you keep fighting. Today we’ve got this!
A picture Bobbi painted of a fairy with watercolors after she lost her hair last year. It’s grown into what she imagined it to look like.
Today Bobbi completed her 30th radiation treatment. Man, there is simply no words that can describe my admiration to this woman. From the start, the bleakest day’s, to now crossing over a milestone that’s deciding everything. It was a long-haul, 6,000 miles! And she did it with her head held high, a sense of humor, and uncompromising attitude of screw you cancer. Knowing the odds, not being sure if she would see Christmas or spring. I am thankful to family and friends to catch her when she needed it, all being proud and concerned. Her friends and family have been unbelievable from the start. The party in Wausau last year opened her eyes to all the love and support that others have for her. Kindness, having others back at times, returned ten fold to her a time she needed most. The love from direct family made her smile during the darkness days in many ways. Sean and kids visiting more, staying at hospital during Whipple, her siblings love going to chemotherapy with her, all made a difference. Nobody was sure of anything at one time.
I’ve notice small but significant things that show me her old cocoon is really shedding. We were out playing frisbee the other day and it reminded doing so before all this. Last weekend there was a big get together for her sister Lori’s birthday at their cabin in DeTour. Bobbi arranged everyone to meet a few miles away so we could drive there and surprise her. Mike, Bobbi’s brother and she escorted everyone in there on the back of Mikes motorcycle. Driving the car behind her and seeing this brought back so many memories of our days flying in the wind. Seeing her smile, hands out stretched like a bird, told me she was on a natural high. Was great seeing her and Mike leaving the way. She also had a great week with her sister Chris. After the party her mother Betty took a fall and shattered her shoulder. After just getting over a hip replacement stairs can be a bit of a challenge and proved to be. We were all very fortunate to have been there when it happened. She’s 84 years old and one tough woman! Was hard to witness.
She met other cancer patients at the hospital at 8:15 every morning. Didn’t miss a day. The drive to Petoskey proceeded. It did her a world of good to connect with others fighting this unforgiving foe. A lot of hours and miles spent bonding. She said none of then talked about cancer. Each day someone brought a snack and they plowed ahead to get treated. She made some lifetime new friends. Her doing this with her younger brother Steve has been good for both of them.So proud of her. That page is now officially turned as of today, and we have sometime to enjoy part of the summer. Her hair is returning and is so soft and pretty. Has curls in it! She looks very attractive. It so nice to see her with the sparkle returning to her eyes.
4 more months of weekly chemotherapy after a few weeks off. It’s a lot. It won’t be easy, but when has it ever? I’m starting to see news signs of change and it’s beautiful. The 4 months going to Karmanos and she will be ringing the bell hanging on the wall there. Surrounded with the many who work there, and get treatment there. Their like family now. Always with a kind smile and words. They share pictures of their kinds and humor is always present. There are very serious moments of course, it is a hospital, but it’s like Norm walking into Cheers. Everyone is happy to see her. I stay back in the woodwork and just watch. Taking everything in.
It was time for a positive post. Cancer is terrible. It’s so far from being black in white. A lot of blurred lines. Yet you push on, knowing some days will suck. I often didn’t know what to say. Simply get her pillow, and the blanket Cinneidi made her and cuddle, knowing it would bring needed sleep to her. Often not saying anything. It’s great being able to gentle rub her hair again and knowing she’s sleeping.
A page has been turned. Eyes are wide open to life. We may never know if she is officially cancer free, doctors are hesitant to declare those words, but she is definitely a survivor. Yesterday is over for all of us! Be it good, bad, or just a lot of work. Now passed. Today is new. People often wonder if they’ll get through something. They can. Maybe not in leaps and bounds, sometimes you have to crawl through it, but you can. There are many distractions each day that try to rob and blind you from the good. We push ourselves, are hard on ourselves. We jump from one project to another. Which is good to a certain point. Just don’t let the years add up wishing for things you already have.
There’s been a lot in the news about it lately. The ultimate goodbye. Every second and every breathe to live is over. Final. There’s no more hurt, physically or emotionally. Done. The one thing they probably all desired is to literally rest in peace. A place never found while alive. Just wanting to be done with all of it. Being alive every 24-hours feels like a torture. The situation or event that caused such pain would be less painfully ending than it would be living.
Many can’t comprehend it. Questions are asked about why and how could someone do that. The human spirit fights with every breath to live. From the time our eyes first know light we are fighting to live it. Some question it when the person is famous and financially set. What problems could they possibly have? They had “everything”. To be alone and seriously making that decision is a face to face meeting with yourself. Do I do it? Or is life suddenly going to get better? Whats it going to be? Live or die?
I know for myself that life’s mountains get pretty damn high. I’m not afraid to say I’ve looked into this mirror. I’ve been able to believe in hope. I think if hope is gone, then life is really over. Some have small threads of hope in their hand, when it may be a rope. And some believe they have a thick rope but in reality it’s thin.
No person alive has “it made”. They are some more fortunate in the life they were born into or worked hard to achieve. Compared to lives struggling to put a roof over their head and knowing the sound of their child’s hunger. But money has nothing to do with the decision.
When I thought about it, really gave it a serious thought was when a sudden disease changed everything. An emergency quadruple open heart surgery led to unexpected complications. It took 3 years of battling, and 28 more less serious surgeries to follow that kicked my ass. I did everything I could to continue to live. Many a night not being sure if I would. The wires and beeping machines dropping fluids into my veins made me question it. I made peace with perhaps not waking up, but it was like I had no options. I had to be a peace with it. A higher power was in charge.
Things improved but life was no where easy for my wife Bobbi and I. We lived a simple and good life. Children, grandchildren, relatives, some good friends. Long work hours long, mortgages, the whole works. When my heart stopped working as it should, most of it, besides family and friends, changed. We thought we could handle anything life threw at us without worrying others. The more surgeries that took place the harder the fight became. We told each other we’d get through it. Bills poured in and slowly removed our life saving. Somehow or another it lead to a new day.
When alone with my thoughts a part of me was tired of physically struggling and swallowing the pain. Maybe it was time to check out? I didn’t want to be a burden to anyone. Until someone is in that position it’s hard for them to understand it. Pain makes death inviting. What kept me from checking out was Bobbi and the children. I couldn’t leave Bobbi in the midst of this hardship. I wasn’t ready to never see the ones I loved again. The moments before that ultimate final decision are lonely and silent.
Hope was not given up. Eventually there were more better days than bad. Then out of now where Bobbi is diagnosed with one of the worst cancers a person can get. Pancreatic cancer. Reality was again staring us in the face. What the hell kind of crap is this? What would our future look like in the next days, weeks, and months. My health issue I looked at as dice being tossed. Either it was going to beat me and if it not I had no intentions inviting it.
When Bobbi was diagnosed with her cancer, one which very few comeback from, it changed everything again. There was no way life was dishing out to us this reality. I knew that there was a reason I didn’t cash in my chips before, my wife needed me now more than any other time in her life. I would be with her throughout it all.
We decided to fight forward. I knew Bobbi had the spirit and fight but also knew what the statistics were. Not good. A period of shock was felt by everyone. Nobody was ready for this one. Was I about to lose my wife? The one person I’ve given everything to. Made every plan in the tomorrows with. I felt like I had no other reasons to live if she died. Then the thoughts of the children crept into my thoughts. The loss of both would be a nightmare. I don’t think like that anymore.
Bobbi has continued to battle. Months of chemotherapy. A major surgery, weeks upon weeks of daily radiation. Her weight peeled off her and her hair swirled around the shower drain. Daytime became night and night became day. Clocks were only good for reminding us of future battle days.
The rate people are committing suicide is alarming. In the last years more people have died from this than auto accidents. It doesn’t matter the amounts they have in a bank account are. The type of house they live in or what job they had. Death doesn’t care.
Why do people take their own life? We all feel sadness and despair for all kinds of different reasons at different times. They are far from trivial in what they are if such actions are attractive. Sometimes believe we’re not strong enough to deal with a situation that is known by the feelings of disparity. We are strong enough though.
I understand how heavy life can get. It truly can at times be a torturous existence. We may smile and pretend everything is alright but it’s only a charade. Every night your unsure if you are strongest enough for the day, and throughout the day your question how your ever going to do it. The thoughts get heavier and heavier.
It is an escape. It’s certain not a decision made in a moments time. I believe the first thoughts of it are in a mirror. The mental and emotional anguish that’s felt in our brain, or the physical toll our personal battle is fighting.
We owe it to ourselves, to others that love us unconditional, to tell another when it’s seriously being considered. Our worst days alive haven’t killed us yet so why not believe in just one more day trusting someone enough to talk? You never know how things may suddenly change. Give it one more second, one more hour, one more day.
The national hotline for help is 1-800- 273-8255. Globally, close to 800,000 people die due to suicide every year, which is about one person every 40 seconds, according to the World Health Organization. In 2015, more than 78% of those global suicides occurred in low- and middle-income countries.
Bobbi has finished 26 sessions of radiation as of today and we are excited to soon be finished. Another 4 months of chemo. We’re doing good and battling whatever life throws at us.
The last month of daily radiation and weekly chemotherapy has really taken a toll on Bobbi. A thousand miles a week where each day becomes longer and more draining. There isn’t a whole lot of joy taking place. This is really whipping her out. She calls it a night about 7:30 and begins the same preparations in the morning. She hasn’t had a decent night sleep since the surgery, getting up 3 to 4 times throughout for the bathroom.
It’s tough as hell to watch. She puts on a brave face and cheerful persona with others but I see the toll it’s taking. She shares with me how difficult this experience is. Will be so glad when September approaches. Our life consists of hospitals, doctors, pharmacies, needles, and highway signs. It’s hard trying to keep her spirits up when I’m angry having the one I love struggling. We thought after the Whipple we’d be done with the degree of hardship, but there just doesn’t seem to be an end to them. Bobbi has always done things at 100mph, and gets frustrated with herself after growing tired 5 minutes into a chore. Going on a year soon, and hopefully will turn the page on this chapter. Now mouth sores are developing. Recently had lab work done so hopefully they look alright.
Nobody promised life would be easy and fair, all of us have our mountains to climb. But damn! This is a tough cancer. She’s beating it but it’s taking everything she’s got and then some. Haven’t written in awhile, just going through the motions of living life. Thankful for family and friends love and support. We do find time to laugh and love, but there is an underlying struggle taking place that words really can’t describe. Nights of staying up thinking in the dark, where it’s quiet and calm, I try to make sense of things. Just have to keep pushing ahead. One more day, one more treatment, one more doctor.
Not really sure what to write. Numb from everything. I want her to get better so badly. Days of yesterday’s seem so far away. Having to learn how to live life at the moment is important. You really can’t get too far ahead with plans because we don’t know how she’ll be feeling when something is.
May 18th, 2018
Bobbi – Friday morning and it’s 5:00am, been up 2 hours already. Gotta love the pre-chemo steroid effect. Riding the radiation van has been interesting. The War Memorial Hospital here has a volunteer program where different drivers take people here from the Soo down to Petoskey for radiation. My younger brother Steve is receiving radiation too so the van makes a quick stop near Pickford to pick him up. Certainly feels surreal. We were born on the same day, three years a part, and now each are challenged with cancer.
Wednesday we had a quick ride to Petoskey, all green lights. Got to the hospital and when the elevator doors opened five of us had a quick stride so we could return sooner. I almost chuckled out loud… cancer peeps are a strange breed are we really jogging to get radiated? Thursday is chemo day as well. You know when they wear thick gloves, gowns, and mask and your IV infusion comes in a biohazard bag they’re not exactly sprinkling you with fairy dust. Will get a break from both for 2 weeks then it’ll be the home stretch. 4 additional months of chemo and done, at least that’s the plan. I really don’t know how much longer I can keep doing this if plans change.
May 30, 2018
These times seems endless. Each day that goes by is taking its toll. Just have to get through it I keep telling myself. Both of us keep battling. He rarely mentions his heart issues, is a good bluffer, but takes all of it in stride. Our primary family doctor is moving so we’ll be looking for another at the end of June. The third one since we’ve been up here. Really like the Doctor we have but she is moving to Grand Rapids.
Cancer has literally taken me to the doorstep of death. The great robbery, hair, body and often times strength. At one point I was so ill my breath was cold, my body emaciated. Yet somewhere in the depths of illness is a courage to forge forward. I refuse to surrender, a smile is contagious. Try it, it costs nothing. 10 more radiation treatments to go 20 completed. 5 of 6 chemo treatments done this cycle, for a total of 17 since last year. 28 total sessions by the time things are supposedly finished. Certainly feeling the effects. Successful Whipple surgery didn’t come free of side-effects. Up every morning at 3:00am using the restroom for the next 4 hours. Trying to tweak pancreatic enzymes, diet and still learning what’s tolerable. Sure didn’t sign up for this but we play the deck we are dealt. Days are long and challenging. Mike said give yourself permission to rest, I know he is right but it is foreign.
At least the weather is nice and my flowers are coming to life. Haven’t had much time to enjoy them but it’s pleasant when we sit out and relax. Just feeling so tired and whipped out all the time. Looking forward to seeing the kids this summer. Gotta keep on keeping on! Tomorrow is a chemo day so up early and on the road.
Thought it was time to update family and friends on the next set of plans in Bobbi’s battle. On April 25 we met with her oncologist Dr. C, and in Petoskey, at Karmanos. She was surprised to see her doing so well after the Whipple procedure close to 4 weeks ago. It was nice visiting with the team of nurses, social worker, all who’ve become friends. Bobbi was her positive and cheerful self. We anxiously waited to see what was coming next.
It was decided that it’d be best for her to undergo 6 weeks of daily radiation and chemotherapy once a a week, then 4 months of additional chemo to follow. We spent the night in Petoskey because we had to meet with the radiology professionals early in the morning. Karmanos is an amazing place to have this done. The social worker there presented us with a voucher for a hotel stay that night.
When we met with her radiology doctor he explained the process. Bobbi drank contrast dye, had a CAT scan, and the areas where it was to be administered was tattooed with three separate dots. One on each side of her midsection and one in the center. Appointments were set up to start this coming Thursday.
Twisty, the tumor in her pancreas was destroyed. But it was adhered to her portal vein. Cancer cells left on the portal vein was confirmed by pathology, which is why they are going to aggressively continue treatments.
Bobbi – “Appointments back to back. Wed met with Dr. Coppola to map out my future chemo. 6 weeks radiation with reduced strength Gemzar 1 week x3 then week off with radiation mon-fri. Then 4 cycles gemzar full strength. Well so much for an optimistic 2 months chemo, but now it’ll take us to probably Labor Day. When does it flipping end? Where does the human spirit find the energy to keep going? The well is pretty damn deep and if I hollered down it an echo would surely sound. Thursday I met my radiation oncologist, very nice doctor. Kind and thorough, making sure our concerns were addressed. Pretty sure he is about Sean’s age or younger. After meeting was given contrast dye to drink and IV access for more contrast then off to CT to get my dot tattoos marking the spots for radiation. Hmmm a permanent reminder of my cancer journey, like I needed anything in permanent ink to remind me that I have cancer. I had to bite my lip! They stung!
The next six weeks ought to be interesting. We’ll be riding the Road to Recovery bus, a program the War Memorial Hospital has here in the Soo, with others getting radiation. It leaves each morning and arrives back later in the afternoon.
Mike shared with me a good insight in looking at all this coming up, because it’s discouraging to now have to endure the upcoming daily radiation, and months more of chemo. It’s depressing. He compared the start of this new journey as the last one. When there is a major storm you look at outside and still the destruction taking place and question how in the heck your going to survive it, rebuild, endure. You wonder where your going to find the energy and positive attitude it’s going to take to get through it. Yet, when you venture out after, take things one day at a time, things slowly look better. Not at once, not without hardship, but you survive. Going into the first rounds of chemo, the Whipple, felt like this. There were many WTF moments! It’s taking awhile for my digestive system to heal. I’m on a medication named Creon to help the pancreas break down food better. What type of foods that can be handled is still a hit or miss type of thing.
Thought after the Whipple there’d be less of a battle. Doctor C said she wasn’t going to BS me in saying this would be easy. And we know it won’t. Yet I know I’m going to beat this. Didn’t know how or when in the beginning, but we did. Don’t know how or when we will now, but know we will! It just gets so exhausting digging deep and finding the energy it takes to fight this cancer. We talk a lot, he gives me pep talks when down. I know it’s been difficult on him emotionally and physically but he keeps on going and is the glue of this crazy experience. Everyone’s support and love has played an important part. I’m glad he stayed on me about trying to write what feelings are taking place. It’s helped a lot. Doing good and have to remember we’re only 4 weeks out of surgery. Today was spent digging in my garden and getting hands dirty. A place where I forget about what’s taking place. Wasn’t sure if there’d be a garden this year some months back! Onward we go, Thursday chemo and first radiation treatment. Adds up to about 7500 miles of traveling the next 5 months. Glad it’s not winter!
While we drove to see brother Steve on Sunday we seen hundreds of Sand Hill Crane birds in a farmers field. It was amazing. When different wildlife cross our path I often look up the message to see what they symbolize. This is what was written – “Here in the center of the storm you can see the vortex surrounding you, the vortex is the field of your unharnessed emotions, fears, pain and stored trauma where you can feel lost and overwhelmed and not know how to find your way out. At the core of all storms is the eye, it is where you see the light has broken through the clouds, this is where the calm waters give safety. It is here that you have perfect clarity and can see the overriding power of your emotions surrounding you.”
Kind of feels this way right now. A few months off chemo has brought a lot of clarity to everything. After all this the butterfly will soar!”
It’s March 26th, a day before surgery. We packed our little Prius last night and we’re ready to go on the 5 hour car ride to Grand Rapids. We first stopped at Mercy hospital, getting typed and cross matched for 2 units of blood. Then registered at the Hope Lodge. It was a quiet ride, blue skies and dry roads thank god. The only storm brewing were the thoughts in my head. The Whipple surgery is going to take all day and finally will remove the tumor from my pancreas. I’m glad I’ll be sleeping through this ordeal, if it goes bad I’ll be unaware. My thoughts are with my husband Mike and our kids and grandchildren, and of course family. My sisters and their husbands are also waiting. I knew what to expect, have been in operating rooms since I was old enough to get a job. Working from my 20’s to my 60’s in them while living in Wisconsin. My close friend, having succumbed to pancreatic cancer post Whipple, was on my mind. Lucy and her battle with cancer made me try harder while preparing for the surgery. Positioning ones mind is the real battle, to not let it’s ability to rob you of moments at insecure times. Also on my mind was my brother Steve, who’s also fighting cancer, was undergo a serious surgery himself in a couple of days.
In the morning up early sitting in dining room. This could be it. There was a chance that I wouldn’t make it out alive. I tried not to think about that. Mike and I trained a month for this and I was ready to get Twisty the heck out of me! What a wonderful place this was to find peace and serenity during the worst storm of our lives. I can see the hospital parking lot from the window. It’s pouring rain and chilly outside. I finish off the last of my GED drink (some special surgical post recovery drink). If it’s good for you chances are it will taste bad. One hour before arrival time and all is quiet. I feel strong time for twisty to surrender. I sat for a bit then went back to our room. We slowly (Mike and Sean and I) proceeded to the hospital. Registered, had copies of advanced directives made in the event things didn’t go as planned. Gown on, IV in, SCD stockings on, lying on hospital cart awaiting anesthesia to place art line and do abdominal block. After everything was done family came into pre-surgical room to visit. 6 of them in all. Took great peace in the fact Mike was rubbing my head and hand as he always does. He knows how to soothe me in times of hurt. I would look at him and he’d just wink, we didn’t need words. We knew each other’s thoughts. Dr. Onesti came in and said a prayer with family. It was calming. Off I went. I recall little after that. Mike received text messages throughout the 6 hour operation.
The next few days were a blur. Hooked up to different monitors, a pain pump (which I only used once), and hospital staff coming and going endlessly. All I wanted was sleep. I was told everything went extremely well.
When things calmed down I was up walking and soon sitting in a comfortable chair. The nurses were all amazing! Family visited, a good friend I grew up with also stopped in to see me. I felt like I had been cut in half. Which, by looking at the 13 inch incision, wasn’t too far off from being true! Sean and Mike took turns sitting by my bed throughout the day. Each day the surgeon stopped in she was amazed at how things were going. Slowly went from clear liquids to soft foods. Very small amounts. At first nothing stayed down. More walks. I pushed myself with each one. I watched and remembered how Mike did the same during his hospital stays for his heart battles and it helped me do the same.
Before I knew it, after only 3 days I was cleared to be released! Unbelievable! Since the Hope Lodge was across the street if anything went bad I was but a short distance away. Plans were to stay for a week after the surgery then see the surgeon before returning home to Sault Ste. Marie. At the meeting we’d go over the final pathology reports. Having our son Sean with us was comforting. I knew this entire experience was tough on him, as it was for everyone, but especially him being my son. He told me he had no idea how he’d be able to handle funerals for both his parents at the same time. Mike’s because he knew he’d soon follow from his heart challenge, it’d simply be too much on it if I didn’t make it. I didn’t even know what to say back. I couldn’t image what that’d be like. Mike’s his stepdad but the two are as close as blood. Thank God things went well!
We spent the week resting, watching CD’s from the huge selection here, playing pool, and taking walks inside and outdoors. We also spent a lot of time laughing and enjoying each other’s company. We had many meals together, though mine were different than the mens. A few nights were tough and I was sick. The two worked like a team helping me get through them. Put together puzzles in the huge dinning room too. In addition traveled to see my sister Chrissy and her husband, niece and her young children. It was a wonderful time. Mikes usually very quiet and it was nice seeing him relaxed and talking. Though he looked drained and exhausted. For the first I feel like I’ve been given a second chance at life. I plan on taking full advantage of it!
We learned about this place, appropriate called the “Peter M. Wege Guest House Hope Lodge” from the hospital next door. It was literally across the street from It and the Lacks Cancer Center. The best way to describe it is to quote what the website shares. (https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge.html)
“Each Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting better. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease.”
The experience here is like being in the calm of the eye of a hurricane. It feels like a real home. We’ve met other survivors battling their illness, staff and volunteers who shared their personal stories and battles. It was empowering walking into the doors of this beautiful and recently remodeled building after such an emotional and physically draining operation. Always being met with a kind smile and greeting.
We can’t thank the American Cancer Society enough for this. Thank you. Before my diagnosis we hadn’t a clue how we’d get through it. It was extremely scary and unsettling. After 25 hospitalizations and 19 stents, radiation, EECP, with Mike, the last place we wanted to be was in more hospitals.
On Monday we met with the surgeon, Doctor Onesti. All the pathology reports were completed. The tumor had adhered to the portal vein and some cancer cells remained on it. Plans were to undergo radiation for 5 weeks, daily, and 2 additional months of chemotherapy to whip them out (next appointment in Petoskey is April 25-26). Everything else looked great. Don’t know how I’ll find the energy to heal and be ready for this next step but I will. At least Twisty is out of me and beaten down. I am very grateful and so far lucky. Through the grace of God, prayers, positive attitude and love this journey will continue for a bit. Have put on this post different pictures. Thank you for the support, love, and thoughtful cards that filled our mailbox! We’re going to have one heck of a party in Wisconsin when this is but a memory.
Different photos of the Hope Lodge –
We returned home on the Monday evening, after 2 weeks in Grand Rapids, Michigan. Bobbi is healing excellently. The Whipple procedure went very well. Having Sean here has been a big help! The stay at the Hope Lodge, which we’ll be featuring in the next post was amazing.
We met with her surgeon before returning home and she explained what the results of all the pathology were. Here pancreatic tumor was beaten down to the size of a grape from the intense chemotherapy regiment, and removed. It once was the size of a walnut. 29 lymph nodes were taken out, all negative for cancer cells.
The tumor was stuck to her portal vein so there are a couple of cancer cells still adhered to it. Bobbi will now undergo 2-3 more months of chemotherapy, in addition to 5 weeks of daily radiation to whip these out. This will take place 4 to 6 weeks from now. The procedures will take place in Petoskey again. Her surgeon is an amazing doctor and she called Bobbi her “Rockstar”.
Intake of food is a hit and miss type of experience. Some cause nausea and doesn’t stay down, but considering the type of operation this isn’t unusual the surgeon said. It’ll be awhile before things settle. Her diabetes has improved since the operation. On Sunday we visited with her sister Chrissy and her husband Jeff. It was a well needed visit! It was nice to get away and enjoy their company. We also had an opportunity to visit with her niece and her kids! It was a cheerful time. When Bobbi became tired we returned to the Lodge and went to bed early.
We are feeling optimistic about everything. Today I went shopping for nutritional soft foods, supplements, and called her cancer team in Petoskey. Her appointment there will be on April 25th. Will be a consultation visit and to set up appointments for the future.
When we got home cards from friends filled the mailbox! Thank you! She is doing well, sleeping right now, but we’re slowly getting back into the groove of things. I can’t express enough how helpful it’s been to have Sean here! There were a lot of positive things that took place and having him here with us has definitely been one! Steve, Bobbi’s brother, also underwent major surgery for cancer a couple days after hers and is home now too. What a couple weeks of unsteady waters.
We are feeling very grateful for everything and everybody. The next couple of months will be challenging but it is what it is. Got to roll with the great news, think positive, get rest, and take on the next pitch. Told her we’ll be home soon and that’s where we are now! Home!
Went to hospital for Bobbi to register at 7:30. Sean came with us. Jim, lori, Jeff and Chrissy soon arrived. At 8:30 they took her back to prep then allowed us to visit with her for an hour. Bobbi was cheerful and hiding her real emotions behind humor.
We’d look at each other and had a hard time not tearing up at the same time. Monitors were hooked up, wires, things I had no idea what they were. As she visited I simply rubbed the side of her head where new hair was starting. We spoke the same language to each other with our eyes. I remained quiet, taking in everything that was going on. Wanted her to spend the time with her family and son. The surgeon came in and explained what was going to take place, said a prayer around the bed. I was as at a loss for words. The journey has been hell and she has fault so hard to live and never balked this entire time with countless trips of chemo and pre-operative instructions. She truly is a warrior. The week leading up to this was difficult. Having the kids visit helped a lot. Now everything is resting on text messages that the surgical room is sending letting me know what’s going on.
The first text said the surgery begin at 11:18. The first thing the surgeon is doing is checking her liver out to doubly make sure there are no tumors. Then the procedure will take place.
Second text at 12:11 said no spots on liver. Surgery is continued.
I’m in the hospital chapel as I write this. The next thing I knew 5 or 6 people came in and a service began. Lasted about 20 minutes. Didn’t know when to stand, sit, kneel, or what to say back as it seemed everyone said the same thing by memory at certain times. Respectfully tried to do the same. With Easter this Sunday I think it was in relation to it. Pastor talked about Judas.
All of this feels surreal right now. My every thought is on Bobbi and flashbacks of simpler times. I’m so fortunate to have our paths cross 25 years ago. This experience has brought us closer in a million ways. About 80 minutes have passed and still quite a long wait to go.
Going to get something to eat now, meet back up with everyone. Know many are praying for her and in their thoughts. Many well wishes received this morning. A very touching one was sent by her nephew Cole. It meant a great deal to both of us.
5:51pm – Surgery is done. A complete success. All areas around were clean. Portal vein area inflamed. No ICU unit. Will be up and talking in 2 hours. Will be taking it easy today with rest, tomorrow walking. Good 3 to 4 days with drains. Everything that had to go right went right. Thank God. Twisty is gone. 100% successful! Not out of the woods yet but certainly see the trail and sunlight. Back in the chapel giving thanks. Thank you to everyone. When the going got tough you helped her in ways no others could!
Update March 28, 2018
Doing better than expected. Numbers all look good. No complications. Walking a lot, trying to do everything herself with no help but you know how she is! Miss. determination woman. Watching her sleep today was nice. She had a calm look that I haven’t seen in a long time. Family was here visiting and a good friend she grew up with. So glad Twisty had its ass kicked and out of there. Will continue to update this post with news. Thank you for the love and messages here on and on Facebook. She’ll have a few more months of chemotherapy when healed. Not sure what cocktail blend or type, all that will be decided later I’m sure.
March 31, 2018,
Sean and I went to the hospital yesterday morning and quickly learned that she was cleared to leave! Unbelievable. 70 some hours after surgery and she walks out the door. Last night she walked the hallways here at the Lodge and watched CD movies available from their large selection in a study room.
About 5:00am I woke to find her out of bed and sitting in the recliner. Asked her how long she’d been up and she said only a few minutes! Somehow or another I just knew she wasn’t in bed.
Today her sister Chrissy visited and spent some good quality time together. Sean went to Meijers food market and stocked up with soft foods. Bobbi also decided to tackle 3 sets of stairs! I was like….WTF? Seriously? It felt so good to sleep together. We have nothing planned for the next week. We leave Grand Rapids in 9 days after seeing her surgeon for follow up visit. Things are going very well. She is getting up and down like nothing took place.
Last Thursday we learned that we could get the results of the CT scan directly from the medical department here in the Soo. So we did. When we got home both were very hesitant to open the envelope. If past liver spots (which had been told a number of times were probably Mets) present, the upcoming surgery on the 27th would be called off. It felt surreal to have ones fate and futures on a single sheet of paper waiting to be opened.
Bobbi – “
The envelope. Today Mike and I went to medical records and requested my CT scan .. How many peoples right to life lay on a sheet of paper , a scan a test result? I was afraid to open it I was shaking inside but tried to remain cool. It is what it is was my mental preparation for a potential death sentence. Pancreatic cancer diagnosis is not something you wish for. 5 in 100 survival rate of 5 years. Never did I think why me but at times it took all I had to get through the day. I had decided when the liver spots appeared and heard appears to be Mets that my options were few. I had a biliary stent fall out early on that made me think chemo would be almost an impossible feat.
Looking back had Mike not contacted my oncologist team I would not be here to write. Liver spots have come and gone. Whipple surgery not for me until I heard chemo indefinitely. Chemo was kicking my ass. I was becoming weaker with each treatment. It was getting harder to walk and pick things up. I was having difficulty writing and could no longer snap my fingers. I refused to nap and continued to push beyond my energy level. Went to visit with my mom when nurse navigator from GR called. When I got home Mike told me with surgery I would most likely be cancer free after surgery. May need chemo or radiation but won’t know until operation is done. I cried with tears of hope.
My brother and I both born on the same day three years apart both with cancer both receiving good news on the same day. He had reoccurring jaw cancer. Had big surgery 4 years prior. This will be a little less invasive since won’t have to retrieve lymph nodes. A second surgery never good news but when dealing with cancer the good news for cancer patient no spread is the best one can hope for.
Nervous and anxious. So thankful for all the love, prayers, and support. “
Getting Bobbi ready for the fight of her life has left us both drained but feeling positive. I’ve shared that this woman has not quit in her DNA and she’s showing it each day. Walking further each day, weight training, and quite evenings.
Have learned so much from her friends and family throughout this. Each have played a huge role in this battle. Will sign off for now and share more after her surgery. Kids will be visiting today, minus Jen. She unfortunately came down with the flu. Miss her lots but know she’ll be here in spirit and prayers! Aiden’s birthday too today, turned 12-years-old. Party with his favorite cake. CC driving here. The kids are sure growing up quickly! Thank you everyone for the love and support! Bobbi’s is going to beat this! Twisty soon to be decimated! The surgery is called a Whipple procedure. This is what it involves — https://en.m.wikipedia.org/wiki/Pancreaticoduodenectomy
We’ve been getting ready for the end of the month taking small steps. Getting all the chemo out of Bobbi’s system. First few walks consisted of 40 yards, the next day 50, and so forth. Now it’s usually twice a day for a pretty good distance. Had a nice weekend visiting with Lori and Jim in southern Michigan. The rubber separated from the wheel rim going about 55mph on the trip there. Made for an interesting moment. On the way we stopped at the Mackinac Bridge where “Blue Ice”, which doesn’t happen very often, accumulated along the shore. Was a nice break. Showed how beautiful nature can paint the landscape. Never seen anything like it before.
Waiting for things to take place is agonizing. When every thought is on one thing it’s trying. Bobbi has good days and others more challenging. Yet I know she’ll be ready both physically and emotionally for surgery on the 27th. Sean, Jen, the grandkids, will be visiting the 22nd to 25th so that’ll be nice. With this down time I think a lot about different events and things that have taken place in our lives together the past 25 years. She’s been a real godsend in my life.
In my early years I had absolutely no idea what a home was. I knew what it wasn’t, but not what it was, or should write “is”. The county social services removed me from the house I lived in at nine. My siblings and I are all survivors without getting into details why. For me it was foster homes, shelter homes, etc. At the age of 18 I was on my own. I took off like a caged dog breaking loose of its chain. Put my feet in the Pacific Ocean, Atlantic Ocean, and the Gulf of Mexico. The word home had no real meaning. It was always onto the next new place.
That was until I met Bobbi. After meeting her I learned a lot about it. Once a year we traveled the eight hour trip to the Upper Peninsula of Michigan, bringing her home to visit her family. This was important to her so it became important to me. I always told her we’ll get her home at least once a year. When you love somebody you naturally want to see them happy. I always promised to her that I’d get her home. In time I felt part of the family and looked forward to seeing everyone. Oh, it hasn’t always been smooth sailing. But family always seems to find a way to make things work.
Eventually we married and bought a house together in Wisconsin. It wasn’t anything particularly fancy or extravagant, it was about 80 years old. It took a lot of work and money in making it comfortable. She worked the soil and I hammered. It wasn’t long before we heard the piddle – paddle of little feet running up and down the stairs. Grandchildren. We marked their heights and dated them on the kitchen doorway frame. It had all the feeling never felt before of a home. Our travels slowed down, and cookouts with family, and Christmas concerts became our adventures.
Before this we each drove motorcycles and took a lot of trips. Northern Wisconsin terrain is thick deep forests with lots of wild animals. Not tigers and lions but deer, raccoons, skunks, etc. Fall rides often cold and wet. Many a ride I remember her tucking herself behind my back, hands in my coat pocket, trying to stay warm. I’d tell her “we’ll be home soon”. My own hands and fingers seemingly frozen to the handlebars feeling like ice. Not pleasant. I kept my eyes on the road and hand twisting the throttle. In the winter weather can be brutal. Ice and hail storms, random blizzards. Driving a car during the midst of a storm is challenging. Bobbi would sometimes shut her eyes listen to my promise of “we’ll be home soon”. While often being unsure about when but driving accordingly to see that it happen. Everyone’s been there in their lives. The sigh of relief when finally pulling into your driveway after a long trip. Bad weather having made it more difficult.
When Bobbi first became ill, while still living in Wisconsin, I knew it was time to bring her home again, permanently. I knew the kids would have a difficult time comprehending this. They were family so why move to family? She needed the tranquil sounds of water, where her siblings and mother lived, Michigan. I don’t know why. Just knew that it was important. I drove her to Michigan and returned to Wisconsin to sell our home, packed what belonging would fit into a large U-haul, giving the rest away, and Sean drove it to Michigan. I stayed behind to take care of remaining business and soon joined her. I had no idea what we were doing, just knew that it was the right call at the right time.
Soon after we got settled into our new home Bobbi was diagnosed with pancreatic cancer. A “WTF” moment for sure! All the unknown became crystal clear then though. Maneuvering through this has been a road neither have traveled on. My cardiac battle is pale to this experience. A storm of a different type that no weather pattern can be compared to. After thousands of miles, many different hospitals, 5 months of chemotherapy, now a major surgery March 27th. I don’t exactly know how we’ll get through it, but I do know that she’ll be home again. We have a whole lot more of living to do. Just because you don’t know the exact road map to your destination doesn’t mean you won’t get there. Somethings are simply figured out on the way. Sometimes you just have to “wing it” and keep your eyes on the prize.
Spring is close. Time for renewal and seeing life blossom again around us. The same is true for Bobbi. Surgeons will finally decimate Twisty. Been one hell of a long fall and winter. So proud of her. She is one tough woman. She IS bringing the fight to this. I can’t express enough the appreciation felt to everyone whose helped us during this time. Thank you.
The last 5 months everyone stopped worrying about the original pancreas tumor and concentrated on the liver spots that developed over the same period of time. Three out five doctors said they “felt” and “believed” that her cancer had turned metastatic, though couldn’t be sure. Spots were too small for biopsy. They were going on the facts that were present and small because they were responding to the 13 chemotherapy treatments. Just last week they told her she’d be on chemo rest of her life.
Out of the blue the phone rang today from her surgeon in Grand Rapids, said the whipple was back on the table. We really have no idea whats going on. Five months of going back and forth, surgery on, surgery off, to surgery now back on has left us grabbing at straws. The surgeon said that she would first have to go 4 to 5 weeks without chemo in order to handle the surgery. What???
What a rollercoaster. The surgery is no guarantee that the cancer won’t spread (if it hasn’t already…why the sudden liver spots that responded to treatments?). Its a major surgery. Does she endure this only to learn it already had spread? Why the sudden change of now the surgery being on the table? because the liver spots shrunk, which they are suppose to do while on chemo? Does this mean it stopped from spreading? All questions the best minds in the field have no exact answers for. But what the heck, do the surgery and shake the dice and make a bet on the odds? Which aren’t that good to start with. When do you look at quality of life over quantity? The chemo has her barely able to walk, the whipple has a high rate of the cancer recurring anyways, but then with new complications from that.
Simply not sure what to think of at this time. Which is bullshit considering it was last fall she was diagnosed. They say there is a gray area with cancer, its not black and white. Well there sure is a black and white picture between life and death. Is there too many chefs stirring the soup? We’ve put on over 10,000 miles trying to get answers that all come back with yes, she has pancreatic cancer, but unsure about everything else because the chemotherapy is doing its job at keeping the other spots in an unsure picture. We’re going to talk with family an go from there.
Late Tuesday night – After spending the last 8 hours talking, going over every possible scenario we’ve come to a decision. It’s time to bring the fight to the cancer while this little door is open. There is a little light at the end of the tunnel and we can’t spend our time worrying about it now caving in! We’ve gone this far to quit now. Yes, we’re filled with diagnosis that the professionals may or may not have given the most accurate information. Lived with the unknown for months, traveled many miles, but it’s time now to swing for the fence and get Twisty the hell out of there. If the CT scan looks good in 4 weeks Bobbi is going to go through with the surgery. The evening was spent looking over every paperwork timeline and statistics. Some good, some not so good. Maybe it’s spread, maybe it hasn’t. No one is for sure but the window of opportunity has cracked open a millimeter and we’re going to give it everything we got to bring the fight to this monster. It’s a huge surgery. Pictures on the Internet look like people have been cut in half and restitched. Possibilities of complications many. Past friends haven’t faired to well after the same procedures. Her past medical surgeries in her abdominal will make it more risky. Her diabetes the same.
The alternative is chemotherapy for life, until the disease overpowers it. But you know what? We knew this would be a real fight and fighters we are. It took a bit to layout the facts and encouragement. A pep talk of facts and how I know how strong her spirit is. But it is ON! Would have been so easy to say to heck with it, it’s going to win eventually so why fight so hard. But that’s not who we are. Are we scared and apprehensive? Hell yes! But you get no where in life sitting back and waiting for things to come to you. Singing the blues is okay too…for awhile. But it’s time to suit up, put the biggest bat in our hands, and stomp this demon into dust. We trust the surgeon. She’s performed over 80 of the operations. The hospital is one of the best. If she and her team feels like they can do this, and it’s the best chance at extending her life, with quality, then it will be. I want to see her walk the beach with her sisters, laugh and love her son and Jen. To see her daughter Shay continue to rock this world with her adventures!Sit around campfires with her brothers and plant flowers with her mother. Spend time with friends, love and embrace her grandchildren. If this is the only opportunity we have to see these things happen then it’s time to battle. The next few weeks these writing will go silent. I personally have to help get my wife physically and emotionally ready for this fight. As far as past liver spots, what some doctors shared in what they “think” it may be, there was also a lot going on at the time with her bile duct stent becoming dislodged, 300 count blood sugar numbers, that may have inflamed things. Maybe the spots went down because her family doctor finally got her blood sugars into normal ranges. All we know is that the window of opportunity may not remain open for that long. There is a lot of fight in this woman, like I’ve never seen in another female or male. I’m going to be by her side every second, every minute. I’m ready for this. She’s ready for this. It’s now time to prepare, exercise, and get her in the best condition she can be in. Thank you again for all the support and love shown by many throughout all of it. We got this! Surgery is tentatively scheduled for March 27th. Will keep everyone updated throughout it.
Bobbi – The word cancer has a way of consuming thoughts. How does one position these thoughts? The brain is a remarkable thing when compartmentalizing of information.
When do you take control of cancer? Is there such a thing? Control is taken when it is not the first thing you think of in the morning nor your last thought at night. Inner strength where the hell does one get this? There are empowering moments on the cancer ride. Sometimes we make decisions and take control when we have no idea it’s being done. From personal experience, I just knew what made me feel stronger. Hair clippers in hand when my thick long hair was circling the drain. Only a couple of tears were shed with the first swipe of the clippers blade. I trusted my husband to shave an even bald look. Better yet we were going bald as a couple. My husband Mike was shaving his head too. Tried talking him out of it but no chance. It was my way of not letting cancer take the of my last hair. If it’s going I’m taking it myself.
Chemo with Abraxane and Gemzar weekly infusion 3 weeks on one week off. Hate the infusions but love the people. The nurses at Karmonos in Petoskey are wonderful. Know what to expect. A couple of good days after steroid and chemo then the crash. I feel myself weaker with each infusion. Neuropathy in hands and feet. It’s like trying to pick up a quarter with an oven mitt. My feet feel like dog paws, under the toes it feels like swollen pads.
I refuse to nap… if cancer is going to take me come and get me awake coward. My journey has not been normal, or maybe it has? Was told I had Mets by three different doctors, that chemo would be indefinitely. Told that surgery wasn’t an option. I then positioned my thinking to this is my fate, questioning how I’ll do chemo indefinitly. It literally sucks the life out of me. At what point do I concede and quit treatments? I knew it was getting close to this decision last CT done. When I’m feeling the weakest (after the 13th treatment) suddenly out of the blue the surgeon calls and says the whipple surgery is back on. How do I pull this one from the depths of my mind? I had to find the strength somewhere.
I put my boots on and walked around the parking lot, down the street and up and down stairs for the next 4 weeks. Gradually it went from 100 feet to 200. Then 30 steps to 300. My hair was returning and my attitude improving. They were telling me I had a chance to live longer than a couple of months. I was preparing myself for the upcoming battle.”
The trip to Petoskey on Valentines Day went as planned. We arrived there early. We didn’t talk much during the 100 mile venture. The plans were to meet with her oncologist doctor and then Bobbi completed her 13th infusion.
The doctor seen us quickly. Right away she told us that her last CT scan improved over the last one two months ago. The liver spot was smaller, the tumor in her pancreas was “undefined” in mass but the head of her pancreas was smaller. Stent open, lab numbers good. She asked us if getting right to the point was the appropriate way. Bobbi assured her that it was.
No worse news is good news. The doctor said, when asked, that she would be on chemotherapy indefinitely. Until the drugs no longer were effective or until the disease progresses. She had no problems allowing her to have what she said were chemo holidays. When she learned how difficult the last few treatments have been the doctor thought it’d be alright to cut her Abraxane 20%.
Nonetheless the cut in it did little with the side effects.I called her nurse and let them know that every two weeks will have to be what’s endured, instead of 3 weeks on, 1 off, and 3 on again. It’s simply too much on her. This has been one hell of a long stretch. Her doctor agreed and said that it was fine. She asked if she’d ever have hair again and the doctor said doubtful, as long as she was on the chemo.
So we go from there and live life by the moment. It’s extremely difficult watching thetreatments impact her. Two to three fair days a week with the rest painful and barely able to walk or use her hands. The emotional toll it’s taken just as painful. Finding the right balance of quality in life is the big gamble and goal. Do you fight it with everything you got and pay for it with zero quality? Only to then watch it continue to take more and more? Do you concede and just quit everything. We know that’s not an option. Bobbi’s in no way shape or form will or is considering that. You want answers in black and white, as the questions asked and yet many things fall into a statistic and gray area. You go from scan to scan expecting to know more and leave the places hearing the good news attached to the bad news. Then trying to make sense of all of it, wrapping your head around things, is a major mind screw on its own.
“Cancer rant here we go . You really piss me off. I’m mad you have the ability to make me sit and rest even when I want and need to get things done. Today I took outside Christmas lights down not because I had the energy but because I was tired of looking at unlit lights in the middle of February. The old days they would’ve been down 2 days after Christmas. Getting used to the new norm and trying to find joy in the everyday small things has me looking around corners to fill that jar of emptiness. Awaiting Spring. New growth, new plant life fresh air. I hope I feel well enough to enjoy those small things. Smells, sounds, feel the dirt gardening. Bring some beauty and be done with this drab dirty snow. This week my heart has been full. Grandkids making honor roll. CC getting compassion award from French teacher for volunteering. Son and daughter-in-law getting positive acknowledged at work. They call them life’s little pleasures. Never quite understood that saying, still don’t. These are life’s milestones that make our hearts smile. The important ones. With news being filled with school shootings, political corruption, and hate try to distract us from these milestones. These are some of the things that make our lives meaningful.
When diagnosed with a terminal illness how does one erase it from our mind. It does not go away it is always present in the forefront of our thoughts. Although at times it is fleeting the thought yet remains, will I see another Spring or Summer? Surgery is out because it’s metastatic. Tumors have shrunk on scans but PC is incurable. When I heard chemo would be indefinite or-until the disease progresses was when I truly wrapped my head around my diagnosis. Right now the tumor is being kept at bay they should rename the chemo center The Hope Factory. Admission one cancer diagnosis ticket. If lucky you will receive the Golden Willy Wonka ticket, a cure on the horizon. That extra fight to spend more time with the ones we love. Plans for a future we may or may not see. Clinical trails? Sure…be a lab mouse to see if it works, and then only the rich will eventually be able to afford it because insurance companies won’t cover it. There are no clinical trails here in the Upper Peninsula of Michigan anyways. Watched Mike grab onto false hope too many times only to be let down dealing with those emotions. I think the key really is to find the right balance, not get caught up in the statistics of pancreatic cancer, and live life getting the most out of the 24-hours woken up with. Which really is all about the simple things. This fight is a long ways from being over, but a fight it certainly is. Don’t want to be a Debbie Downer, so hesitant on sharing a lot. Certainly don’t want pity or be felt sorry for. Are there angry and painful days? Hell yes! But we do steal from it some very meaningful moments and memories. Friends and loved ones have all been amazing. The new friends and doctors at the infusion center are bonuses. Trying to find a good taste out of a crap sandwich is mind magic.”
Things going from one appointment to the next. Learning this week more information and clarity. Bobbi’s going to start writing and these will be included in this blog.
“Cancer I hate the word. It has stolen every hair on my body . Chemo the magic potion brought to infuse into my body in a bio hazard bag with nurses gowning gloving and wearing masks I know it is toxic. Yet the toxicity of the chemo is what I am relying on to kill my tumor. They tell me I was fortunate one of the 5% to catch it early. Which they now tell me I have spots on my live. WTF. My instincts told me it was my pancreas. You don’t get urine looking like a quart of motor oil and look like a gilded lady for no reason. Blood sugars out of control. I knew I had cancer before I got a diagnosis I just kept it to myself. You always want to spare those you love from pain they don’t deserve. I think I knew for a long time cancer would be the card I would be dealt in a deck that was stacked. They say life isn’t fair you worked your whole life helping others. To me that was my gift my earthly reward. I have had many gifts my husband whom many had turned their backs and hearts on, how lucky was I despite being ill he has made me feel precious and beautiful. He is not afraid to rub my bald head and make me feel beautiful. I love our children. Shay such a special daughter. I may not have given birth to but she reminds me of myself at a younger age. Not afraid of adventure always striving for perfection and not feeling you are perfect just the way you are. What a gift our special Christmas Charlie Brown tree tied to a curtain rod because ornaments were heavier than the tree. Drinking wine together talking and all during a power outage. The three of us just trying to stay warm in one of the most isolated places on earth. Most people think of DeTour as a different road route yet that is where we were. DeTour Michigan across the road from the mighty Lake Huron. Snow thigh high billions of stars and silence that is deafening. I like her rebel spirit and her wanting to make a difference. I get it she will do great things she has a heart that has endured unimaginable pain from an early age . She is a warrior like her dad and I. To not be bitter amidst life’s challenges . I get angry when I think how such a sweet soul had such tribulations. I think of my moms life losing parents at 18. Fair hell no another survivalist. The bricks in life are hard to endure at times but I will fight. I have love all around me. I have family which some were robbed of at an early age. We are not perfect human beings by any means but we do our best.
Thinking lots about family and friends in Wisconsin. Gotta keep the fight going!”
One day at a time. The last 4 days have been a living hell for Bobbi. The side effects of the chemotherapy peaked and tried to broke her mentally. They said to continue the treatments until they become intolerable and that’s what it’s become. This is her week off, with another scan this week and a meeting next week with doctors. Which is when she’s going to have her schedule changed regardless what the outcome of the tests show. Markers were done last week, so will know more on that additionally. It certainly been hell week though. Last night in bed she broke down and just let the tears flow from the pain and mental anguish. Said she didn’t recognize the person in the mirror. The steroids, the loss of what little hair she had grown falling out again. All I could do was hold her and keep medications on course. It’s not the cancer that’s causing it, it’s the drugs that are attacking it. The cancer pain is there, where the tumor is, but the majority is chemo related. The 1st treatment, to the 12th, gradually brought on more issues. It’s so disheartening to witness. Then dealing with insurance changes in the midst of it, which are now slowly getting figured out and organized, didn’t help. Bobbi’s always been very organized with keeping track of bills and us getting things paid. When a wrench is thrown in the mist it becomes overwhelming. We’ve had good long talks about not letting numbers overlap the mental health that her body and mind need to heal and fight. Numbers are numbers, no matter how many zeros are attached. I write letters with payments and show attempts are being made but we certainly are not going to starve to try and keep things from the red zone. We’ve tapped into a lot of different cancer assistant programs, working with financial institutions, and it’s slowly bring that stress level down. Knowing that we’ve reached the intolerable phase with the treatments, and things will be backed down, is a relief. It was one hell of a ride. It’s always one more scan, one more lab, one more doctor, one more needle, one more car trip. Winter storms of ice and snow didn’t stop us. We pushed forward with her sleeping after treatments. I keep my eyes looking forward and deal with the unknown ahead with tunnel vision. There are going to be brighter days. And there will be new battles and storms. But there is no quit. Period.
I was in a very dark place to last couple of weeks. Detached from a lot, turned the damn news off, and tried to put things back in perspective. It’s hell watching someone you love go through so much, and even more difficult when managing severe heart issues and taking 10 different medications. It is what it is but has taken its toll. With spring soon arriving, it feels like the cocoon is starting to crack and a beautiful monarch is going to emerge with Bobbi. It may be false hope that’ll be slammed with the results of new tests this coming week but it feels like some easier days are ahead. Knowing she will behaving less treatments, which will in turn bring much needed relief to her is a good thing. It was like a high fever finally broke, for now. Today we kept it simple. Visited her mother who had a total hip replacement done a little over two weeks ago then went for a nice drive.
Bobbi and I read this and thought a lot of things were good descriptions. She’s doing well with today and we don’t dwell on tomorrow. Thank you for the read. Took a break for a bit but will soon be sharing again.
After years of living with stage IV cancer, I have some suggestions. By KATE BOWLERJAN. 26, 2018
DURHAM, N.C. — EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.
When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.
So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”
It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.
I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.
“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.
“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.
We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.
A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.
Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.
This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”
The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.
What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.
The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.
My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.
Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?
Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.
The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”
The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.
There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.
A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.
After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.
But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”
When contributing to different media outlets photography, positive and inspiring stories and events, there were times when I decided that the camera and pen were to be be shut down. An example is on a story detailing a school that was having a replica of the Vietnam War Memorial put together on their football field. Filmed the school children lining the streets welcoming the semi trucks coming into town, wrote about a teachers vision to one day have this replica become a reality. But when people from all walks of life began to visit it, placing their hands on names and crying, it didn’t feel right to invade their pain recording it or details writing on it. The cameras and video equipment were silenced and respect for what was taking place honored. The piece done was picked up later, and shared to millions through CNN on Veterans Day, 2010.
This in one of the reasons the iPad keyboard is going silent (taking a break from “blogging”, which I still don’t quite understand what it is). Right now isn’t the time or place to share the intimate and private battle this family is fighting and trying to come to terms with. Family and friends will continue to hear from Bobbi whenever she’s up to it or wants me to share with them news. We are in no way giving up this fight! There will be good days and unfortunately rough waves our tomorrows will bring. It’s time to circle the wagons and bring together all whom she has loved and who love her. The last update she put on Facebook today, with it being deleted a few hours later. Will always stay in touch with others, our email is on another page. We certainly are not conceding anything to Twisty! It’s a bitch of a disease. Plenty of fight and time left. Each 24 hours alive is about choices and mine this hour are is spend as much as my time interacting with her. There are some tough ass days, but there still is a lot of love and laugher! Laugher is so important! She is quite the unique person. I just smile when thinking about her! We have such a fun week in front of us. Spending time with family. Christmas makes it more special! Missing all of them. Seeing Sean, Jen, and the grandkids soon is exciting.
Thank you for the kind support, prayers, and wisdom to the many never met. The battlefield has change dramatically. Both of us are wishing everyone a very Merry Christmas and a peaceful New Years. My time is now going to be spent entirely on taking care of my wife. In my world it matters the most.
We knew deep down that the battlefield has changed. The CT scan Bobbi went through last week showed no liver spots to be biopsied. Naturally we were elated. Christmas miracle. The doctor performing the procedure even said the spots might have been inflammation from her first bile duct stent falling out and going through her system. Nothing to be seen meant the cancer hadn’t spread right?
Well, he’s not a oncologist. And after discussing it with three unrelated oncologists we learned that her pancreatic cancer did in fact spread to the liver. It has metastasized. We met with a new doctor, Tuesday, before her chemotherapy treatment and she confirmed things. The reason the spots were not seen by the CT was because her first two sessions of six treatments of chemo decimated them. Which is good news, yet learning that her cancer has in fact spread, and how we learned of it, was heartbreaking. There more than likely won’t be whipple surgery. Plans are now to do two more sessions of chemo, PET scan, then radiation for five weeks, once a day on the tumor in her pancreas.
Bobbi took the news good as one could I guess. At least we now have clarity she said. We wanted to believe this and that, hope for the best, but reality has a way of slapping you in the face no matter what your wishes are. It’s Thursday, we took a nice drive to get out of the house, talk, and went out to dinner. Have had lots of talks of late. Putting all the cards on the table, not trying to convince ourselves jacks are queens and hearts are spades. Three different doctors have been involved, many different scans at different hospitals, and everyone assumed that the other had informed us about it spreading, when in fact we never knew and had to learn about it in the manor we did. Doesn’t change anything. It is what it is. Can get angry and I want to jack people up but it wouldn’t do any good. It’s also isn’t an automatic death sentence. Because we may have a good idea what may eventually lead to our crossing over doesn’t mean you stop living, laughing, or loving. I know, with my heart having a full metal jacket in it with 19 stents, and complications from the open heart surgery, that it will probably be what does me in. Yet I’ve been battling the challenge seven years now when told one to three years at the max. You just never know. To start digging your grave because of bad news is nonsense. Bobbi shared she’s been aware of it for sometime in the back of her mind. Again wanting to hope for the best, yet still knowing deep down that Twisty had more tentacles unseen but felt.
Physically she is doing well. This last session has left her joints sore and numb. Fatigue hasn’t kicked in yet, but know some will soon, is tender in midsection. Has medication for discomfort and anxiety. Was assured that medications would given no matter what the problem. Don’t know if they have pills to give us 10 more years, the real problem. But palliative care will help ease discomfort. I know from experience that isn’t always the case. Morphine may take the pain scale of ten down to a 6, not to mention all the BS side effects.
Tuesday night we slept for about three hours. On Wednesday night she fell asleep five minutes after her head hit the pillow. I went into the living room and just sat in the dark thinking and trying to wrap my mind around everything. I want to do whatever I can to make her smile and laugh, feel loved, and be happy. We are hoping for some years. Not stupid though. Statistics are statistics. They don’t mean much but they don’t come to be by rolling dice and adding things up. This is a terrible cancer. Once it spreads it really is a different battlefield.
Clarity is important. Bobbi is a fact person. She deals with reality pretty damn good. Right now she is assuring others that she doesn’t plan on leaving this earth soon and worried more about how loved ones will handle the news than how it will impact her life. We talk about it though. We have the tough discussions and talks that we never dreamed in a million years we’d be having. Right now we have TODAY though. That will be what we live in and take in. Optimistically resilient. Twisty is certainly going to be smacked around and choked off when it can be. We each agree that when it’s time to slide into home base it’ll be head first with plenty of dirt on us. No time for games or time spent on meaningless things. This fight is a long ways from being over! Going to have a great holiday. Going to visit with her sister Lori and Jim on Christmas, and nephew Jordan. Then when we come back our kids and grandkids will be visiting! Very excited to see and spend time with everyone. It’s been hard to get together when not knowing if there would or wouldn’t be surgery, and when it’d be if so. She is still on a high from seeing so many at her “You are Loved” party. So many people from the hospital she worked at for forty years she’s kept in contact with. The news wasn’t great, but life isn’t always great for anyone. You fight your battles the best you can, give it your best shot and live in today. None of us know what our tomorrows will hold. As a friend shares, we could get hit by a bus. We are hoping everyone a Merry Christmas and a peaceful New Year! Let this writing remind you to look at the people in your lives as if it’ll be the last day you see them, and the words shared as if the last. The fight goes on!
We drove down for the liver biopsy last night, checked into a hotel a block from the hospital, and went out for a nice supper. The surgeon told us last week there were a number of new spots on Bobbi’s liver and the biopsy would provide us whether or not there’d even be a surgery. Showed up on time, she was prepped, blood taken, and we waited for the procedure to be done. Thinking positive the whole time but preparing ourselves for grim news.
We weren’t expecting a Christmas miracle, if Twisty isn’t just hiding in some small cell we’d be lucky. There wasn’t a spot to be seen. Strange. She moved into different positions on the CT and still nothing. A different hospital than the first imaging was done. All week long Bobbi has lived with the thoughts that her cancer has spread. Trying to stay positive but even the surgeon, going on the films they had, thought it had spread. When they said there was nothing to biopsy we about ran out of the hospital. I wondered if the beast is watching in the shadow. Damn thing.
Don’t know how, why, or anything in why one place said there was and then another saying all was good. Elated for the good news but also a bit angry that she, and the whole family, had to spend the last eight days mentally preparing for the worst news possible. It was fighting Twisty and having it suddenly becoming a dozen of them. I don’t trust this monster. It makes a horror show mage in Hollywood boring. It’s the stranger in the dark.
We’re unsure what the next step will be. Calls have been made and we’re thinking the original planned Whipple surgery will be next. Get the tumor out of her pancreas and follow it up with 4 months of chemo. Knew it was too early to step out of the batters box. Knew we had to stay and think positive, which we did, but things certainly didn’t look good. Onward with this battle, there will be no rest until Twisty has been destroyed. It’s still inside her and it’s shown to be crafty and deceiving. It felt like Bobbi was walking the Green Mile, going to be strapped into the electric chair, and the phone ringing at the last 5 seconds before the switch was flicked given a full pardon. Each day dreading waking up because it was the first thing on both our minds.
The “You are Loved” party in Wisconsin took place and really brought a smile to Bobbi’s heart! Was so happy to see her having fun talking with so many. It was so good to see her laugh and smile, even in the midst of unsureness in severity. We FaceTimed with everyone and seeing people dancing and wishing her well, missing and loving her, can’t be described in words. Now with this good news she is riding a well deserved wave of happiness. Yes, a major surgery isn’t a great thing thing to look forward to, but knowing that she’s still in the fight is a blessing. Thank you to everyone who took part in this, as well as the support and prayers of others across the globe. It has become a global support. People we’ve never met in person, from Wales, England, Italy, Mexico, and new blogging friends here have been unbelievable. Never imagined that so many would take the time to lend their support, recommendations in getting second opinions, prayers, gifts, all of it! I look back on how we dealt with this last week, look at the goofy video made doing the coneheads skit on the last post, and I’m more convinced than ever that positive thoughts and energy make a huge difference in today and the reality each day brings. There will undoubtedly be more fastballs coming. Not today so will embrace it. She WILL beat this. There is fear but no compromises. It will and hasn’t effected our celebration of Christmas. It’s wanted to! The mental anguish has been the toughest it’s ever been this last week. One I wasn’t sure I’d personally be able to endure physically. But just when your at the edge and brink of despair there is always hope. A simple for letter word that now has so many meanings.
Thank you for the read. Very much appreciated. We couldn’t have the attitude we have without it. Never give up! Pick up the bat no matter how heavy it may seem or how bad the last pitch hurt smashing you in the head and swing away. We all have this ability. May not feel like it at times, but when push comes to shove we learn things about ourselves we never knew existed. Until the next writings please embrace today and try to find the good in it. Hard to do when physical pain wants to be boss. All of us are human and will have these times. Hard to put one foot in front of the other while our bodies and thoughts are saying no more.
There really is no description in believing, even being told, that the cancer has spread to there not being a single spot. The doctor said it might have been inflammation from her first bile stent becoming dislodged. Not going to lift our foot off Twisty’s neck, it’s going down! Going to continue to think positive, make goofy videos, and move forward. When dealing with cancer it’s rare to get good news. It certainly was a relief to learn this good news in the midst of this battle.
UPDATE 12/14/17 – Plans now, after several phone calls between Petoskey and Grand Rapids this morning, is to have 2 more months of chemotherapy and then another scan to see if spots reappear. They’re being cautious and before they do the Whipple procedure. Which makes sense yet knowing the tumor in her pancreas is still there is naturally worrisome. It is what it is and all the worry in the world won’t change anything. We’ll continue to take things day to day and keep swinging at the pitches. Waiting now to see when the chemotherapy will resume. It’s not a set back. Feels like one, because their not really “sure” and I expect things to be in black and white with no in between. All I can do is be supportive and remain strong for her.
This may appear upside down, why unsure, but hit play and it will become upright. Yes, we may be dealing with some serious challenges (one with cancer and one with heart disease) but never shutout laugher and love from today! Married and still crazy after all these years! #ConeHeadsMovie Have a great weekend friends, we are! Live each day of your life like it’s the last and love!!
The anticipated CT scan took place as planned. Bobbi stopped by the hospital a few days early to have labs done and picked up two bottles of contrast dye she drank before the test. The label on the bottles said they were like a vanilla flavored smoothie but Bobbi shook her head with disgust drinking them down. A long ways from a smoothie she said. They then placed an IV in her arm. Why they continue to stick needles in her, for blood work, IV’s, and such when she has a port confuses both of us. Use it!
Two days later we were back on the road to Petoskey to go over the scan with the doctor. First seeing the nurse, who took vitals and her weight. Then about 45 minutes alone waiting to see the doctor. Usually it’s only five minutes or less after meeting with the nurse. When he came in he explained that the scan hadn’t arrived but the preliminary report did.
He said that everything that could go right went right. The tumor shrank to 3 to 4 millimeters. We were elated. Wow! It went from 3-4 centimeters to millimeters! What we didn’t catch at the time was that he was talking about a tumor present in the liver. Not the one in her pancreas. When he mentioned liver I told him we knew nothing about a spot on Bobbi’s liver. This was the first time even hearing about this. Something didn’t make sense or add up. WTF? When asked about the tumor in the pancreas and it being butted against her portal vein he said the report only detailed the liver. We thought that it must be good news if it went down, the chemo was working, because it wasn’t even mentioned. He asked what plans the surgeon had and we explained that a Whipple was the next step. He said that he didn’t know what criteria the surgeon wanted but perhaps no surgery at all. The tumor had shrunk so much maybe more sessions of chemo? That would be great!
We left the meeting feeling elated, everything that could go right went right he 0said. This was good news right?Though in the back of my mind red flags went up. We text family and relayed the good news. We drove back excited that there was a chance no surgery would take place. Bobbi wanted to celebrate getting a cream puff. There was a bakery across the street from the hospital so we made a quick stop. No cream puffs, she settled for something else.
On the drive home things simply didn’t add up right in my mind. I didn’t want to say anything and wreck the good mood by questioning things. Everything that could go right went right we were told. This must mean what it implied.
After we got home we sat down and read a copy of the report. It gave a detailed summary on the tumor. Problem was that it was a new tumor we didn’t even know existed before today. When it got to the pancreas the report said that the known mass there had poor detail imaging. That was it. One sentence on Twisty. We googled all the medical jargon that the report was written in and learned the tumor he spoke of was in fact in the liver. There were also spots on her lungs but they did appear to be cancer related. Which is what we’re being told today.
Maybe it was scaring from the result of her bile duct problem? The tumor in her pancreas had blocked it, which lead to the jaundice and then her cancer diagnosis in August. A temporary plastic one was placed in the duct to relieve pressure. This fell out about five weeks later and was replaced with a metal one. So maybe it was a spot on the liver from this? Had to be. We would know more when the surgeon calls us from Grand Rapids after they receive the actual imaging. Knew it would take a couple days.
We lived by the phone, waiting to hear from her surgeon. When Friday arrived every thought was on the phone ringing. What a situation. To live your entire life, to suddenly be waiting for a 5-10 minute phone call that would change it forever. The hours passed with no news. At about 4:00 it rang. It was the surgeon. She explained to us that the imaging did arrive late in the day, but because it was a Friday her team wouldn’t be able to read everything, compare them to past scans until Monday. She said she wanted to call us and at least inform us that things did arrive, knowing we were very concerned. Monday? Seriously? I understood why, but it seemed like years until then.
So we waited, determined not to worry and spent the weekend watching TV, cleaning the apartment, talking and finding things to laugh about. Attitude is important and I know how to get her to laugh. We each said we were having bad hair days in the morning. Both being bald made this impossible of course. But it lighten the mood. Bobbi’s energy returned and she was busy as ever going about the day. On Sunday we drove over to see her brother Mike and spent most the time laughing and having a good time. Her family are really good people. We have our moments like any family, but who doesn’t. Situations are dealt with and moved on. One can’t help but leave in a good mood after spending time with him.
On Monday morning Bobbi went with her mother Betty to a doctors appointment for a hip problem that’s been causing her a lot of pain. Which again shows you the type of woman she is. We are waiting for a phone call, that will change her life, one direction or another, and she makes it a point to still take her mother to the doctor. It’s one of the reasons I love her so much. She has always puts others first, with no hesitation.
When she got home we sat on the couch and waited. The hours passed slow. Around 4:55 the phone rang. The called ID said it was from Grand Rapids. It was her surgeon. The call took the wind out of both of us.
The doctor said that her team looked over everything and she was highly concerned about “spots” on her liver (more than one). We asked if it could be related to the bile duct problems from the stenting and she replied that they considered this but some spots were definitely unrelated to that. There were spots that didn’t show up in her scan in August, which were present now. Her scan in October, when she had the metal stent put in showed them, but nobody informed us, assuming we most have been aware of it already. It was the hospital here in the Soo who did the scan in October and they had no idea what we knew and didn’t know. I think the hospital figured we were informed already. Surgeon said the the liver tumor started out about 14 millimeters. Chemo shrank it. Bobbi asked her point blank if it meant her cancer is metastatic, has spread, their was a moment of silence, and surgeon gently said she believed so.
Tests for a biopsy will be done on Tuesday in Petoskey with guided ultrasound. Problem is the chemo worked so well on this tumor that it may be hard to biopsy to know for sure. The fact that it shrunk is a sign in itself. Scars don’t shrink. She also said there were more than one, unrelated to stent problem. It was a very uncomfortable conversation. The surgeons voice sounded sad. We won’t know anything for sure until the biopsy. She recommended that chemo be continued, if it wasn’t making her too sick.
So that’s where we are. Hoping for the best, to hear that it’s nothing to be concerned about, but also know that it’s a game changer. She said there would be no sense to do the surgery if it has spread to her liver. Why put her through that ordeal she added. We are going to drive to Petoskey Monday night, get a room, and be at the hospital early at 8:00. It takes about 72 hours for the results. If they can get to it. If it has spread she will have to stay on chemo forever she said.
I told Bobbi I was done writing about this. She insisted that it must be written. I’m not comfortable doing so. She wants this to help others and it’s very important to her to do so. We don’t know anything for sure. Not going to jump to conclusions without the facts. Angry that we had to find out about the liver spots the way we did. Maybe nothing to be concerned about. The fact that the spots responded to the chemo isn’t good. The fact that the spots shrunk isn’t good. The fact that no one has mentioned anything about the pancreas tumor against her portal vein, is concerning. No mention of it. That was the beast we thought we were fighting. What I do know is that there is a whole lot of fight left in us. We knew that this wouldn’t be easy. It feels like we have to ask the right questions to get the answers.
Yesterday I went out and got us a small Xmas tree and it looks wonderful. We had put up decorations and some lights 2 weeks ago, but not a tree because we thought she’d be in the hospital for the surgery a couple weeks. Bobbi decorated it beautifully and we are still determined to enjoy the holiday. Very hard to do, but refuse to allow it to strip from us the good. We’ve cried, and I hold her at night close. It’s a very confusing time. I looked at her decorating the small tree and decided to take a shower. I wanted to hide my tears. I love her so much and it’s so painful to watch her experience all this. August 24th feels like a million years ago.
There is a gathering of friends being held in Wisconsin this coming Saturday, simply to show us we aren’t alone. It’s overwhelming seeing how many people are involved and doing so much. She is feeling so much love from others that she often sheds tears when a Facebook notice sounds on this iPad. We have it set to sound like popcorn, and at different times it’s like a large kettle is being cooked. Thank you family and friends. Life often shows the worse of humanity on TV and in newspapers. This shows the very best in humanity. The worst three words heard was “you have cancer”. The best three words she has heard is “you are loved”. Thank you are words that can’t describe what this feels like. She has touched so many lives, and will continue to. You have certainly helped her in ways that only love can do. When we decided it was time to let others know what was going on, until now, the love shown has been unbelievable.
The battlefield may have changed a bit. But there is no quit in her DNA. Not now, not tomorrow, not anytime. Tuesday more tests, results probably Friday or Monday. Have gotten about 5 hours a sleep these last few days. How do you tell your mind to shut down when there is no off switch. We move forward and deal with today. She is feeling good, no pain, but it’ like getting hit by a fast ball. Shock, disbelief, confused, concern, all combined into one.
The holiday season is often a challenging time for many. We all have our mountains to climb with challenges, and the calendar days knows little of these battles. As this season of holiday cheer nears I’ve asked myself what’s so joyful about my wife having pancreatic cancer and I have 19 stents in my heart, on palliative care?
Yet, this holiday season we are embracing it like no other in the past. We’ve already dug out our decorations, lights, and nutcrackers. There is something empowering about it. We were telling ourselves that nothing was going to interfere with this holiday season. Our personal battles we can look at in two ways. We can wallow in sorrow and self pity or we can stand tall and embrace the things and people in our lives that we are thankful for.
It’s not about the meals and gifts, it’s the people around us that matter most. We have so much to be thankful for! We have a roof over our head, food, medicine, and many amazing friends and family in our lives. So many are less fortunate. These are challenging times for many.
Whatever your battle is we all have this moment to live. Make it count. Don’t fall for all the commercialism of the holidays, celebrate being alive and share this time with the people you love and who love you. Let kindness warm your heart because a smile and hug goes a long ways. We shouldn’t need dates on a calendar to remind us to treat each other nicely. But it is a nice reminder to try and do so each day.
A new year is soon upon us. We are determined to make it a year of renewal and growth. Sometimes we see the most important things in life more clearly and in better focus when the chips are down and hope is more than a four letter word. May everyone embrace this holiday season, and celebrate your traditions in peace. Whether it’s celebrating baby Jesus to Hanukkah. Be kind to others, be kind to yourself. Dig out those decorations, hang the lights, and have a extra special holiday season!
Of course it’s 3:00am and I’m up sitting in the living room, the only light on is this iPads white glimmer being typed on one finger at a time. It’s been nine days since Bobbi’s last chemotherapy session (total of 6 now). The next 30 days she won’t receive anymore until the CAT scan is performed on the Monday after Thanksgiving. The doctors want to give it a few weeks for the chemo to flush out her system to get a good reading on the tumor in her pancreas. If it has shrunk surgery sometime in December. It’s butted against portal vein and surgery would’ve been too risky without the first 2 months, of six months, of it to be done (The portal vein or hepatic portal vein is a blood vessel that carries blood from the gastrointestinal tract, gallbladder, pancreas and spleen to the liver (https://en.m.wikipedia.org/wiki/Portal_vein). Hoping it has shrunk. If it has, then surgery soon. The time until then it’s difficult not to worry about the cancer spreading with no chemo being administered. A persistent dry cough has started for the last few weeks and this has caused concern as well. Lots of what “if” a person can drive themselves crazy with! As I’m writing this I can hear her coughing while she sleeps.
Decided to dig out our Christmas decorations and change the mood. Hung lights outside, etc. Doubt we’ll put up a tree since we may be gone for a few weeks around the day. The lights look nice and picked up her spirits. Her friend, who she grew up with, Nancy, stopped by for a visit too. Which was nice. Bobbi is still weak and fatigue comes quick. Went out with her mother for a bit yesterday but wasn’t gone long because it it. This Thanksgiving Day we’ll travel to Traverse City to see Lori and Jim. She’ll probably sleep some on the way.
The mind sure likes to wonder during the waiting for tests and such. Missing the kids and grandkids a lot! Cancer doesn’t take a break for the holidays unfortunately though. The Xmas lights and decorations is a way of telling the cancer that we’re not going to let it dictate to us what we do or don’t do. What’s been nice is seeing her not so whipped out having the sessions right after another. Hasn’t had to take naps lately, just no energy for very long when doing things. Still having tenderness in the area but I called her cancer team in Petoskey and they put her on a new medication for it. Works a lot better.
It seems like every minute of everyday is consumed with thinking about this, for both of us. How can it not be? Just want Twisty taken down, then finish the next four months of chemo and get on with our lives. Wishful thinking. Reality is different. Maybe they’ll want another month of chemo first? Just have to keep pushing on and deal with things as they come. A lot to be thankful this holiday season but the illness is certainly not one of them. I don’t even think about my cardiac stuff. Slap nitro on, a few under the tongue, and move on. It is what it is. With us having a new family doctor, here in the Soo, it’s been a inconvenience having to talk about the same information again and again, explaining I don’t care to see specialists, cardiologist, etc. I made the decision long ago to be done with all that and my mind hasn’t changed. If I didn’t need meds ordered I wouldn’t bother even seeing a doctor. Just know that everything been medically done when it comes to that and it is what it is. I don’t talk about it, just manage it. Don’t have the time to worry or think much about it. Not being stupid about any of it. Some would say getting only a couple hours of sleep some nights is but how do you turn the brain off when so much is at stake? What matters most to me is my wife and her getting better. Period.
The wind is blowing and a storm is starting to brew outside. It’s winter here in Upper Michigan and they’re not the friendliest. Only a few blocks east of Lake Superior so the weather changes fast. Deer hunting season has started so a lot of people wearing orange. Life here is so much more different than in Wisconsin. A town of about 17,000 people and one main road. Still can hear the freighters fog horns blast their deep bellows. People are honked down and getting ready for the blasts that the season will surely bring.
All and all things are good. The calm before the storm. If surgery is performed in a few weeks it’s going to be a major one. A Whipple procedure is big (pancreaticoduodenectomy) In the procedure, the first part, or the “head” of the pancreas and about 20 percent of the “body,” or the second part, are removed. The bottom half of the bile duct and the first part of the intestine are also removed. In a modified version of this surgery, a part of the stomach is removed). So it really is the calm before the storm. What I’m concentrating on right now is Bobbi and taking care of the things that need to be done. I don’t want her to be concerned about anything except getting better and finding joy in each day. Family, friends, have all been helpful and something we’re very grateful for. We wanted to make it down to Wisconsin for the planned party but a seven hour drive, and chemo whipping out her immune system the doctors say is a risk to close to surgery. There will be one heck of a cookout when we do return to Wausau though! Thanks everyone for their prayers and support. It has made a huge difference. And thank you Cinniedi for your daily songs and bible verses sent to your Grandma. Hoping everyone has a great turkey day! Also thank you for the kind words of support and sharing from writers following this blog, new friends that have also helped in this journey.
Bobbi was holding onto my side as our old motorcycle was flying down a hill. I asked her about stopping for breakfast and then realized I was dreaming. It was 2:00am in the morning, she had her arm around me, wide awake. It sure felt real. I rolled over and asked why she was awake, told her my dream, and before I knew it we were sitting in our living room having coffee. Her 6th Chemo was yesterday and we traveled through two snowstorms on the journey south and coming back. Roads were icy and winds gusts of 35mph were reported. We knew that snow was expected, the TV announced winter storm warnings for the last two days. Had to make the trip though. Roads were terrible but Twisty has got to go. The treatment went as expected and the cocktail absorbed. We now wait until a scan in two weeks to see if she can have the surgery performed. The scan was planned for Monday but the powers to be want to see the full impact of todays treatment. If the tumor in her pancreas shrunk then surgery will be about 30 days from today. We’re hoping so. How screwed up is this? Hoping to undergo a Whipple procedure. WTF. But it is what it is and messed up choosing this fighter to mess with. She is determined to kick its butt no matter what.
So here we sat, up at 2:00. Years back it was our bedtime! Bobbi, out of no where brought out the hair clippers and said let’s do this. A half hour later we each had bald heads. Screw you cancer! You will not have the power today, not EVER. We may look like a couple of eggs to others, but have a battle at hand and will not give it the upper hand. Period.
Bobbi’s friends and family, people she never met, are amazing. A once lonely struggle has evolved into one where many have lit their candles, said their prayers, and are sharing their love.
She shared the photos with friends on Facybook, and tweeted them out on our 100,000+ strong Twitter account (see here) She looks and is beautiful. Hair, no hair, matters little at this time. A simple haircut empowered her and wasn’t emotional in any way. We are talking life and death and the later is unacceptable.
I don’t know when a full nights sleep will return. I want so badly to swing my fists at this terrible disease. Beat it to a pulp and then take the boots to it. I stopped the wondering of why and not possible. We are not going to back down and feel pity. Many are climbing their mountains and life isn’t easy for any of us. Life certainly isn’t for the weak. If so it’ll run over you and bring you down. When push comes to shove everyone has the power to give it their best shot. Amazing things can happen when you believe and take a no prisoners attitude. It may start out by knocking you out, and down, attempt to strip you of your dignity and faith, but you slowly get back up, even if you can’t see straight and unsure if you can stand, and fight. May lose a few battles, but will win this war. May bend in the wind but not breaking. Screw you cancer. Not today.
The most difficult part of the day are the dark hours of the night. With daylight saving falling back an hour it’s getting darker earlier. Something doesn’t feel right. It’s like in the Netflix series ‘Stranger Things’ when reality flash’s scenes of a dark and twisted landscape. Fear is the emotion that wants to become the dominant one. We often fear what we can’t see, with the CAT scan coming up it’s like this. You have to though. You hope for positive news. But at the same time, when lightning flashes for just a second, you can see things you don’t want to see. When photographing storms things looked so different when a flash of light lit up the sky. A blue hue, ugly clouds, wind thrashing and beating the landscape.
It feels like the wind is starting up again with the darkness. Getting up earlier. This morning it was 3:15. You want to stay positive but it’s hard to turn a mood around. Yesterday was rough. She dealt with nausea and pain in the evening. She said yesterday that it felt like she was rotting away. Broke my heart to hear. I quickly said no, we are going to beat this. She seems more distant and into deeper thoughts. I know it’s important to take the time to touch. I think cancer try’s to make a person feel they are unattractive and others don’t want to touch them. I’m going to make a point to change this. Nobody should ever feel that they are unworthy of being loved or held. The emotional battles are as tough as the physical ones. At least medications can help the physical ones. Theres no pills for the emotional ones except touch and love.
I can’t image what she is thinking about. I can relate with wondering if my own eyes would open when hooked up to IV’s and wires attached to my chest. But this is different. You never really come to peace with the thought. You just know that you’re thinking is messed up. Think positive, think positive, think positive… yet the lightning keeps striking. Pain, replaces the thunder. As a kid I use to count the seconds when thunder would come after lightning. Now I clinch my teeth. When she is getting sick their clinched with frustration and anger at things I cannot see. Today her blood work for Thursday will be taken.
I don’t like seeing the changes that Bobbi is going through. The physical changes rip at my heart. I see her silently struggling to grasp all of it. Joy is something we need to find, somehow, someway. Hope isn’t just a nice sounding word or belief tossed around, it comes from desperation and fear gives birth to it. There is a price to really feel that word, and doesn’t come cheaply. Oh, we can hope for warm days, or children hope for certain Christmas gifts, but this is another type of hope.
Fear of the unknown never bothered me before. Those days are long gone. Maybe it’s the darkest time inside the cocoon right now. Spring will arrive and like the new life that sprouts out the soil this will be a battle defeated. Hope… not something to be gambled on.
It’s early Monday morning, about 1:00am, unable to sleep. Too many thoughts bouncing around the brain, and moving clocks back an hour always messes with me. No blood work for Bobbi today because her 6th chemo treatment, which is usually on a Wednesday, will be on Thursday instead. It won’t be in Petoskey either, but in Gaylord. About the same amount of drive time. After this CAT scan early next week to see if there are any changes to the tumor. This test, and waiting for results, are stressful for us. What will they show? Is the chemo working? Has the cancer spread? Is the tumor ((TLF) shrinking
Spent the weekend at home. There is tenderness where her pancreas is, and the chemo really takes her energy away. She has always been active before this. I try to stay up on the house chores, which is no big deal, but I think she feels bad about it. I assure her it’s no big deal. I try to keep her spirits up, cook meals that are healthy, sit with her, etc. She has a lot on her plate and needs to take things 5 minutes at a time. She had made plans to go to a craft show with her mother but decided not to. Not because of her white blood cell count, which has leveled out, but no energy. Later in the day we went to get some soup at the grocery store and she returned to the car after walking around a bit. She is having a hard time with this. The desire and want to do more and her body telling her no. It’s takes about five days to rebound physically after each treatment. Her blood sugar numbers are still jumping all over the place, and not seeming to get any better with an increase of insulin. With the tumor being where it is, in the pancreas, which is where insulin is produced, we’re pretty sure it’s all connected. It’s like different battle fronts spread out all over the place.
Keeping positive is difficult. But it’s an important ingredient. I remind her that next year, when the weather turns nice again, she’ll be doing the things she’s always enjoyed again. It’s so easy to feel negative. What’s positive about having cancer and my dealing with advanced heart disease? How do you deal with it emotionally? Doesn’t exactly put you in the mood to do cartwheels and handstands. For us it’s the desire to get back to the simple again. After working so many years and retiring it’s just been one battle after another. We’re strong people, and take things on full bore, but damn! You just never know when things will change so quickly. We’ve always looked at life as waves. When your riding a good one take it in and know it’s existing at the time, because life certainly has its share of bad weather, for everyone. So if you can see a good experience taking place, the moment it is, your enjoying it more than just taking it for granted. Taking things for granted is easy to do. For us we’ve always tried to be aware of the moments of good and calm. Which we are grateful for.
Another mass shooting took place in a small town in Texas, just a couple weeks ago it was in Las Vegas. What’s the matter with the world? So much hate in it. We try not to have the news on. If one persons views don’t agree with another’s their demonized. Has it always been this way and social media simply amplifies it? I remember when there were 3 TV stations on, and at midnight they played the national anthem and it was static the rest of the night. The remote control was your dad telling you to get up and turn the channel, and not too fast or you end up needing pliers to do so later. How times have changed. I just questioned why people can’t just along. Agree to disagree and move on.
It’s hard to make sense out of so many things. We’re learning to shut it all down and off. Concentrate on the things we can touch and feel. Right now what I care about most is Bobbi beating Twisty into a bad memory. Blocking out so many negative and distracting things is a chore on its own. Doing so creates somewhat of a better quality of life. Things just seem nuts when you turn on the TV or walk out the door. If you take too long at a stop sign someone is flipping you off jumping on their horn in a rage. What’s all that about? What’s the hurry? To get where your wanting to get 15 seconds earlier? People are battling for their lives. People are starving. I just don’t get it.
The next ten days will be long ones, a round of chemo, scans, and Petoskey next week to learn where things are at. Talking with the surgeon in Grand Rapids. Won’t have much time for writing but we’ll do our best at keeping family and friends updated. Without either this experience would be a very lonely one. Your calls, cards, messages, everything has made a huge impact on this battle. I wish there was a way to say thank you in a way that shows more than the eight letters that spell it.
This week leading up to Bobbi’s 5th chemotherapy treatment seemed like a roller coaster at times. The first two days, after the last one, went well. Didn’t get sick, had more than usual energy. The next couple of days some side effects kicked in. Lots of fatigue, but no pain or getting sick. The middle of the week was emotional though. On Sunday I could tell she was dealing with a lot internally. She shared that she was having a difficult time in the mornings. When she gets up and showers she continues seeing hair going down the drain and it’s tough, then when she is getting dressed and sees in the mirror her port protruding from the left side of her chest, a few inches from her heart, and the weight loss, it’s a lot to take in. Lori cut it shorter a few weeks back but she wasn’t ready to see it all go then. She knows that the fight is with the tumor but it’s still a difficult experience.
We had a good talk. Decided that when she felt that way to look back in the mirror and say “Screw you cancer! Your not going to affect me today!” Saying this has helped. She uses a little more colorful words, but I’m sure readers get the point. She isn’t going to let it affect her self esteem or continue to allow it control over her emotions. I get where she’s coming from I look at the long scar starting below my neck, going about a foot down. I see it everyday and know it’s ugly. It hasn’t stopped her from loving me. As far as her appearance goes she knows I careless about it. I shared with her an analogy of a cocoon. It’s not the most impressive looking thing at the time. But look at the beautiful monarch butterfly that breaks out of it later! She has cancer. It attempts to take everything from a person. Physically and emotionally. The medicines used to fight it are strong, maybe even stronger because they are taking on a strong and deadly foe. The battle she is fighting isn’t a walk in the park. But the butterfly that emerges will be beautiful. It made a lot of sense to her and helped. We talked more and the last couple of days have been better in regards to these things. I’m glad that we’ve always have been able to talk and share everything.
Fatigue and body aches start about 48 hours after treatments. She’s never taken naps or rested during the day. Yet she knows there is a big surgery in probably six weeks and needs to rest and heal between treatments, prepare her body for it. She recognizes what her body is telling her. She’s putting on needed weight, getting more sound sleep, having morning coffee (though has lost the taste for it) with her mother, the two going to yoga. The days are better than a few short weeks ago. We had a really nice FacyTime call with Sean and Jen, and the grandchildren in Wisconsin. Also a two hour call with Shay in Australia earlier in the week.
The countdown until Wednesday morning, treatment days, kick in around Sunday. Neither look forward to it but at the same time know it’s a day that will be one more step in bringing twisty down.
When the alarm rang at 4:45 I turned off the pumping oxygen machine and thought of the day ahead. Each of us were quiet, preparing for the trip. We seemed to be on autopilot. I could tell right away that I had to take my heart medication early. My chest and elbow ached badly. I questioned how the day would go. Decided to put on two slow release nitroglycerin patches, one on each arm, and a sublingual tablet under my tongue. Before we left I put the orange plastic prescription container of morphine into a small backpack, hoping not to need it but being prepared nonetheless. Also put a portable oxygen cylinder into the back of the car (didn’t need either though thankfully).
Bobbi woke up an hour before me and we sat in the dark living room, She drank tea, I had my usual one cup of coffee and went outside to warm the car up. There was about an inch of wet frozen snow on everything. The drive down to Petoskey looked like the corn maze in the movie “The Shinning”. It was very dark and spooky. All I saw, going below the 75mph speed limit because of black ice, was the solid white lines of the highway and yellow reflectors appearing on turns. Visibility was about 50-feet as the windshield wipers tried to keep up with the snow. Here in the Upper Peninsula of Michigan you never know what the weather will be like in November. When we got to the brightly lite Mackinaw Bridge snow continued to fall (the longest suspension bridge in the Western Hemisphere). We still managed to arrive at the appointment a few minutes early.
Bobbi took a deep breath and we walked hand in hand into the building. The nurse, Becki, greeted us, taking her weight and complimented her on the weight gain and was concerned on how her week went. The lab numbers taken at the War Memorial Hospital on Monday we’re excellent! Her white blood cell count was in the 10,000 range, much better than the 30,000+ a few weeks earlier, when the session had to be canceled. All other lab results looked great! Becki commented on how pretty she looked. And she did look good. She looked confident and ready to take on Twisty. When the meeting was over we went to the infusion center and in no time at all her IV was connected to her port and the treatment began. the staff here are amazing. They treat you like one of their own family members. When many doors closed because of Medicad their door opened. Everyone recognizes us and greets us friendly. All of them commented on how nice she looked. About 15 minutes later her sister Lori arrived and greeted us with a big smile. When first moving to Michigan it was difficult, she was made to feel unwelcome by some (water under the bridge now). But Lori and Jim welcomed her with arms wide open and will be something never forgotten. Bobbi was in the beginning of her illness and it was a very confusing time.
The session seemed to go quickly. Three different drugs are used. Between each her IV is flushed clean for the next. When family is around I tend to give them privacy because it’s important. I have a hard time sitting still for hours at a time so I took a few short walks and thought about everything taking place.
Today’s treatment went well. After we had a nice lunch at Big Boys. With her white blood cells looking good, and not many in the restaurant it was alright. We wanted to do same when her sister Chrissy visited, but the session was cancelled and restaurants were out of the question. I shut it down because of her extremely high white blood cell numbers. Not something Bobbi was happy about at the time but my main priority (and always will be) is my wife and she was in rough shape at the time. It was good to see the two of them laughing and enjoying the time together. The trip back home also went quickly. It’s now about 8:30pm. We watched a little TV, had a small meal, but the treatment makes her legs feel restless, with the need to keep shifting them. Massaged them good, put warm compression on them and it seemed to help. She had a hard time keeping her eyes open and called it a day and went to bed. I’m watching the seventh game of the World Series and will soon be joining her. Wanted to write down my thoughts while there’re still fresh in my mind. It’s been a long day. Will send this update onto the blog tomorrow after she reads it.
Progress is being made. Both physically and emotionally. No nausea, no pain. Might be a restless night with side effects but much better than at the start of this battle. I embrace the good days but we’re not going to let our guard down for a second. Thank you again for the kindness shown by many! She WILL beat this.
Bobbi is still doing well. The last chemo treatment on Wednesday, she shared wasn’t as bad as the prior ones. She had become so sick after the plastic stent dislodged in her bile duct, but at the time didn’t know that the problem was that. After doctors replaced the plastic one with a metal one things improved dramatically. The body aches, fatigue, hair loss, still exist but knows it from the poison being dripped directly into her port and then heart. I compare this experience like a hurricane. Things are calmer, but the next storm is the whipple surgery about six weeks away. A major surgery that we’re preparing her body for with nutrition. She’s lost a lot of weight during the first battles but has started to put it back on. Night time seem to still be the challenge. I just lay with her and lightly hold her and tell her how proud I am with her, and how many people are in her corner and love her. She WILL beat this. They say pancreatic cancer is a tough battle (as is every illness is) but this is one tough lady. She has never once complained or whined about “why me”. She worked over 40 years in the medical field and knows illness is like the flip of a coin in who and when someone’s life is suddenly changed by it.
I’d like to take time to share a little about this woman. I think we tend to put some people on pedestals. Parents, spouses, family in general. It’s not a bad thing, but it’s a lot of unrealistic expectations and pressure on them. I’ve always called Bobbi my angel. Sounds corny, I know. But I do believe all of us experience someone that makes a big difference in our lives at a time when we need it the most. It can come from many different directions and ways.
When they say opposites attract I tend to agree. Our paths crossed in 1993. I was aiming up a shot on a pool game, at a speakeasy (a place with music, drinks, darts, pool, etc…) and right before I pulled the trigger on my shot this hand swept in front of my eyes with a voice telling me “don’t take life so seriously”. Needless to say my shot skipped the cue ball in a crazy direction and I loss $100 on the game! Wasn’t exactly too happy about it. When I looked up at the person whose hand disturbed me she was walking away to the jukebox, I joined her and we started to talk about the selection of music that was available. We combined quarters for the machine and just started talking. She was there celebrating with friends from work. I was there to shoot pool. Neither one was looking for a “relationship”. We just got along well. We later said goodnight to the other, but all week I kept thinking about her. When Friday came around I returned to the same place, and was happy to see her again with friends. We spent time together talking and playing music. To make a long story short, at the end of the evening I gave her my phone number, saying it’d be nice to take her out sometime. Told her I was giving her my number so I wouldn’t look like a stalker or something. She laughed and did call me later in the week. We agreed to go out the following weekend for supper.
I thought, from her thin frame she’d be a salad gal. Wrong! She started ordering things I never heard of. I was a little concerned about having enough money so not to end up having to wash dishes there. Excused myself and went to the restroom to look in my wallet and see. We were safe. At the time I worked in a printshop, as a pressman, and didn’t make a lot of money. We chuckle about it now with fondness. Must admit It was a concern at the time though.
We slowly developed a strong friendship, over the next few weeks and months. We were as opposite as two people could be. Bobbi was very kind, responsible, and orderly. She grew up in a large family, in small cities in Michigan. She was funny and had a real sense of humor. I, on the other hand, stayed out too late and was trying to find my footing with being responsible. We each had children and they were our main concerns.
She grew up on one side of Lake Michigan and I on the other in Wisconsin. At nine the county my family lived in decided it was best that I’d be removed from my home and subsequently bounced around from foster homes and institutions. I won’t get into what family issues we’re taking place, but I heard the words “your a retard” many times. My challenge was later diagnosed as having Asperger. In the 60’s the systems answer to people with mental health issues were to lock them into institutions. My challenges at the time were many. I didn’t communicate with others well, was removed from every school attended, ran away from all the different places, often to big cities like Chicago and Milwaukee, and sensory and language issues. I wasn’t aware at the time of the clinical labels (always believed labels were for cans of soup). I don’t remember a lot about many things. Little pieces of information. Seeing a speech therapist, fighting on school playgrounds, and a lot of dark hallways with doors lined up going down them. Also little paper cups with different medications with M&Ms mixed in.
When my 18th Birthday arrived I was suddenly faced with society and trying to figure out a way to fit in. Things didn’t turn out to well (a few years ago CNN news featured the hardships and turn around with a story ran on Christmas Day, to view click here)The piece was about the friendship developed between a rookie social worker and I that still exists today. It helps explain how opposite Bobbi and I were when first meeting. I was honest with her about everything from the beginning. I didn’t trust people, I drove motorcycles too fast , was in a club for for awhile. Didn’t like the direction it was going and knew our relationship would change. Been there, had the t-shirt (or colors) and I was growing up and knew I had the right partner I wanted to spend life loving and laughing with. Left all of it behind the closer we became. The thing about the type of club I rode with is that one is always doing another’s agenda. There are things I’m not proud of, not in anyway, but a testimony on the power of what real love can do. I use to tell her that I’d leave me in 5 minutes quick in the beginning!
Her acceptance in me, when I didn’t even believe in myself. Her family and friends doing the same. It opened my eyes to a different world. I knew though that I had to find the road to redemption in some way. Since there was no easy entrance ramp one had to be made. I decided, with Bobbi and even our granddaughters assistance, to attempt to help one person, or nonprofit organization, a kind act each week for a year. Never using our names during the times while writing about it. I knew I could do little about the passed, more less control the future, but I could try (This project can be read about on this link). We called it “The Sequoia Project”. Have always enjoyed photography and writing (thank god for editors and friendships with many writers.) Just self taught with the study of letters of ” writing”. I’ve also used to communicate with people most of my life. Even received a personal letter from the President. That was quite the experience. I was mentoring with troubled kids and used to as a teaching tool. You just never know the outcome of taking one step in front of the other and never being scared to try. President Obama, regardless of ones political beliefs, was an inspiring man. He shared that we inspired him! The most powerful person in the world, on a real level. The project was also felt like a true road of redemption I felt I needed to travel.
The experience , making the sequoia project journey, opened my eyes even further to the world around us. It lasted longer than the planned year. I had seen the worst of humanity and instead of adding to it her love changed me into wanting to help better it. Which I tried to do. Each week something new. It’s very difficult to explain. It follows me to this day. Years later I’d get a letter or call telling me a kid I had once worked with had graduated from school. I stress to them education is a gift and tool to raise up and at least put a sail in their ship. How far or what direction would a sail lest sailboat go? The better the sail the more options you’ll have. I share with them my story, far from an angels, and how a person really can change their lives.
Why did this woman jump into the project with me? I was use to others helping others for hidden motives. I share this story to help readers understand what kind of person she is. She is very independent and not naive in any way. The last 15 years of her career she worked helping in heart surgeries! Little did we know later I’d be a patient, but a lot is kind of Shakespearest. Doubt that’s a real word but should be. Each February try to give a shout-out for cardiac health. This unique story was shared during cardiac awareness month a couple year back on TV (see on link if interested).
We’ve been through a lot the last 25 some years. Opened a small family business, a professional tattoo studio and lived a simple life. Vacations were to spend time with family. Never flew off somewhere together and had umbrella drinks in the sand, lol. We’ve lived each day taking everything in.
It’s difficult to open up about so many personal things. But doing so helps the person doing so, and others who may find the courage to do so. We all bleed red in this world, have struggles and victories. We all fall down at times, but it’s what we do with our spills that matter the most. Do we lay in the mud and cry about injustice or do we own it, dust off our knees and get back up smarter and wiser? These writing are about Bobbi’s struggles and successes, but I wanted to try and share the kind of person she is. I know she will beat this. She has overcome many things in her life, with many more adventures to come. I truly believe in angels. They are around us. We just have to have our eyes and hearts open to see them. Thank you again for the many prayers from family and friends.
On Wednesday we left Sault Ste. Marie at 6am, for Petoskey for Bobbi’s fourth chemo treatment. One of the medicines hadn’t arrived at the hospital yet, because of extreme weather the day before. Treatment was delayed about an hour so we returned to the car and took a nap until it did. Actually seen the UPS driver come in with a cart of boxes delivering it. We first met with her doctor and went over what type of week she had and what her lab numbers were. The white cells had dropped some, into the 20,000 range but he felt it was safe to have the treatment.
She went through it like a pro. Was pleasant to everyone and the doctor even mentioned she was the high point of his day. It still amazes me how brave and good humored she remains. The last couple of weeks had taken a beating on her body, the last a lot better than the week before.
The night was restless though. Though she had little memory of it. I stayed up on and off to make sure things stayed alright. She ran a little of a fever but didn’t get sick. Her blood sugar numbers continued to bounce all over the place. Between 200 and 500.
The next day she was up early and continued with her plans on going to DeTour with her mother to see her sister Lori and said she felt fine. I stayed back and cleaned the house and caught up on some sleep. When she got back early evening she said she was tired but had no problems. Which was great news. The chair that her sister and her were working on they drove to her brother Mikes house and gave it to him. He was really appreciative for it. The guy really is a great brother-in-law. He’d give the shirt off his back to anyone and it was nice to see the family work on a project making him happy. He does so much for everyone, his brother Steve and wife Debbie too, and never asked for anything in return. All of her family is like this. That’s why I believe she knew she was ill when we moved from Wisconsin, so she could be with her mother and siblings during this challenging time. When night came around it was as restless as the one before. Tossing and turning every few minutes.
Today it was like she was in a chemo fog. Nodding off to sleep one minute and up the next. Kept things very simple. I did some clothes, went grocery shopping for items she liked, and kept my eye on her without hovering. She stayed on her nausea medicine and didn’t get sick at all. Was just out of it though. The chemo really takes its toll on a persons fatigue. She ate good but again her blood sugar numbers were off the chart. Our new family doctors office called and put her on more insulin too. Didn’t seem to matter and will be something we’re going to stay on top of. Know it has a lot to do with her pancreas, which is where the tumor is, and is a real concern.
She has two more treatments until they do a CAT scan to see if the tumor has shrunk enough to do the whipple surgery on it. If so it will probably be scheduled around the middle of December. That’s what we are hoping for. Get Twisty the hell out of there. There will then be four more months of chemo after she heals from the surgery.
She is doing well. Every day feels like the same and the days in the week are nameless. It’s taking things one day at a time. Her attitude is good but it frustrates her not having her usual energy, it’s a blessing that it was the stent that appears to have caused so much turmoil the past few weeks and not a result of the chemo treatments. This is at least tolerable she said. It’s good to see her eating. I try to do everything that physically needs to be done so that she can simply concentrate on resting and making it through her day with as little problems as possible.
We continue to talk a lot and voice our concerns on the seriousness of things. Try not to worry or get to far ahead of ourselves. It’s really tough being so far away from our kids in Wisconsin and Shay in Australia but not much anyone can do about it at this time. Know it’s just as difficult for them. She wanted to make some calls tonight but was to whipped out.
I’m doing the best I can with what I have to work with. The worry is constant and waiting for anything has always drove me nuts. It’s good to no longer see her in physical pain, needing no medications for it. She is pushing on. Weight loss is an issue so we are doing what we can about that. Things take time. We want automatic answers and quick fixes. This is a whole new ballgame though. It’s reassuring to see her cancer team and new family doctor staying on top of things.
What also amazes me is how life can suddenly change so quickly. One minute all is well, and the next it’s the complete opposite and your fighting for your life, literally. I experienced this with emergency bypass surgery, and then she went from possible gallstones problems to a cancer battle. It seems like a million years ago when life was simple and watching freighter ships pass by. Sitting by a campfire and joking, then to ambulances and IV tubes and beeping machines. She is a determined spirit and a positive person. When she went to bed tonight, at around 8:30, I laid down with her for about a half hour just holding her and lightly massaging her shoulders and back, kissing her lightly on the back of her neck, listening to her breath. She shifts around every few moments. Unaware of it though. Last night she got up about three times and barely remembers.
Nobody knows what our tomorrows hold. Things change so quickly. If I can relay one thing to others it’s the importance of taking in all the good and meaningful times with loved ones. Forget the petty arguments and just work things out with compromise. You never know when serious challenges will be at your door, trying to break in and and create havoc. Tell the people who matter that their important, don’t wait until tomorrow thinking that it’s a given. Life is just too short to get caught up in things that really don’t matter. When butting heads with strangers try to take just a couple seconds thinking what mountain they may be climbing. One thing the world needs more of is simply kindness and compassion. At times it feels like everyone is screaming at the other about their views and beliefs, demonizing the ones who feel or think different. Just agree it’s okay to disagree and move on. We all seem to have a few things in common if we take the time to listen. Trust me, it can and does change with one doctors visit or in one single heartbeat. We never think terrible things will happen today, until they do.
Bobbi is resting peacefully and that okay for the moment. We’ll deal with the next moment as soon as it arrives. Again thank you for the concern many have and are showing. Both family and friends. Hopefully there will be a time where we can help you during your rough roads. Really, isn’t that what life’s all about?
It’s the middle of the night again and wide awake, yet my minds in a trance like thought pattern. Bobbi sleeping soundly, having had a couple better days unlike the past weeks before them. Our day started out with each feeling like we got good sleep, though mine was split up in segments. Feels like sleeping with one eye open. Afraid to go to sleep completely. The only sound in the house is my oxygen machine letting out a pumping sound every three seconds. I sit here in the dark, using the keypad on our iPad, using one finger at a time, trying to wrap my mind around everything. Just a little under two months ago she received the diagnosis of having pancreatic cancer. I can’t imagine what’s going on in her mind. Most the time, I’ve no clue what’s going on in my own. I just know that no weakness can be shown. In my early years growing up in big cities weakness was a something pushed aside and never shown. No matter what the feeling were inside. You simply didn’t display it. Doing so would open the door to predators and this cancer I feel is like that. Give it just a centimeter, a small tiny entrance, and it would use the opportunity to become stronger. The strong swallow the weak and that’s how this world, and life has always operated. It’s hard to let go and let faith be and do what it supposed to do. I know this worry and concern will do no good, because it drains you of the strength needed for the battles. Knowing this, and convincing the brain of the same is two different things. I don’t want to let my guard down even for a second. Yet what’s taking place inside her body cares less about what I think and do. I have no control over the higher powers to be. I have control in helping with discomfort and her knowing she is loved, but none when it comes the battle between the body and medications of another. All I can do, and try to do, is be positive and caring. Yet it’s on my mind every minute of everyday.
Today she got up, checked her blood sugar numbers and they continue to jump all over the place. She’s eating right, taking her insulin, and it seems to matter little. She felt like she had to stay busy. Doing household chores like nothing was wrong, wanting no help. I got that. When I was the sickest I wanted no help either. I wanted to physically tell myself that I wasn’t ill and was going to do what I had to do. Wither it was shoveling snow or chopping wood. Push through the pain and the body would follow. All a bunch of BS. After she started laundry I knew, without even seeing her, that it was time for a break. I was right. When I walked in to help she was exhausted and wore out. Suggested that she took a break and I’d finish things up. She agreed and laid down awhile letting me do so. I knew what she was doing, because I did the same. Pretend all was well and push on. Too bad the body doesn’t work that way in reality. Pushing on only puts more strain on a body that needs rest. Causing the opposite effect in what’s needed.
Survivors guilt is also real. Why am I still alive after all my cardiac challenges, after 27 hospitalizations, quadruple bypass, 25 trips cath lab visits, 19 stents, radiation, EECP, 10-months of physical rehabilitation, etc… and now she is the one fighting for her life? It should be me and I’d take all of it if I could. I tell myself that it was so I could now be around for her. There was a purpose to my survival. Things make better sense now. I have to hang on now for her. I certainly hope that is in the cards. I can’t image her taking on this battle without her best friend and husband. We’ve been so fortunate to have developed the relationship we have. It hasn’t always been easy, what long term relationship is? But it’s certainly been worth it. We remember simpler times and tell each other we’re glad we had our eyes open while experiencing them. Watching our children grow up, the joy that grandkids bring, our friends and family. As you get older this is part of it. Taking care of the other when one is in need. We each see things from the others perspective now too. The feelings of helplessness, the prayers of their getting better, learning from the other what they are really made of in the worst of times. Maybe I had to go through my issues to show her that a person can get through and beat unbelievable odds. That you don’t give up and quit when every body part hurts and the the mind is telling you no more. When every step taken your wondering if the other foot will follow. But you do it. You question why when the world seems to hold little joy, but then are reminded that many do exist. You always have more living to do. More things to experience, more love to feel from the lives that matter. It’s these things that keep you going.
Later in the afternoon we had such a time. It came with a simple walk outside during a beautiful day. Just walking, holding hands, and talking. Feeling the breeze, hearing from loved ones, enjoying a nice supper. It was a good day. I didn’t want these writing to just detail the terrible and troubling days, but to include the good and positive ones. The times during the day where things are okay and no matter what’s going on your glad to be alive. Today was one of those days. We try to have as many of them as we can. We try to look at the glass as half full in all situations. It’s not easy, you have to vent when it’s needed, you have to let the tears out when they come. You can’t look at every 24 hours in a negative way. If you do your blind to the things that really matter most. The things that make life worth living. We laugh and joke around a lot. Some days not so much but you get through them. Bobbi is a very unique person. She has a way of making anyone smile and feel better about themselves and life in general. She is by far the kindest person I’ve ever met. No comparison. The fastballs and curves may come in on us, at unexpected times and speeds, but you just have to get through them. The painful times are the worst. You want so badly to take it away. All one can do is comfort and sometimes that’s impossible. All you can do then is hold them and assure them they are and never will be alone. You hope the medications of modern medicine relieve the physical discomfort.
I have no idea what’s going to be written about, unless it’s an update of events taking place. Been told this and that about support groups and all that. I can’t imagine them helping any stronger than being there talking and sharing with each other. I know it’s frustrating when people aren’t hearing from her directly on the phone or through messaging. It’s not because she doesn’t want to. Often I don’t “want” to either. But she has been a friend to many and people care and need to know how she’s doing. Often I’ll copy and paste when things are moving fast and many need to be kept in touch with. Times like this I can share more in a more personal way. She has touched so many lives with her laugher and love. We are certainly fortunate to have so many caring people in our lives. Cancer, like all diseases, are hard and painful. We all probably know someone, family members or friends, or even ourselves who take on the battles. Reach out to these people. Let them know they’ve made a difference in your life. Forget the small and petty things. No one should go through hardships alone. Life is so difficult to explain and figure out. Just when you think you have something comes along and throws the cards completely in the air. Thank you again for the love and support everyone is showing her, its mattered a great deal. She WILL beat this. I don’t care what the odds of certain things are. Odds have two sets of numbers. I wish there was a way to give thanks to the many people who have included her in their prayers and thoughts. Some we’ve never met but have been told they are from sea to sea. Life has its evil and dark sides, but it also shows humanity at its best. I know I look at it much differently. We get notes and cards from caring people we’ve never met, telling us she’s on their prayer trains. What more can be said but a humbled thank you.
This weekend we are taking things slow, preparing the mind and body for another round of chemo and a major surgery in December. There is a calm in the battle. Prayers are being heard and answered. We’ve also learned a fundraiser is being planned in Wisconsin. Thank you.
October 18, 2017
It’s 1:45am and we leave for the fourth chemo treatment at 6:00am. Mind is racing again with a million thoughts. Bobbi has gradually grown better over the week. No more constant wrenching, pain is under control. Met a Doctor she likes and they are going to keep record of her blood sugar numbers because they are still bouncing all over the place. She is on a sliding scale with injections, 4 times a day. On Monday Chrissy visited from southern Michigan, which was nice. And she will be meeting us in Petoskey later this morning. Her energy simply isn’t there though. She was looking forward to spending more time with family but the energy simply wasn’t there. It’s not like a toothache though. Making a bed drains her. Eating is getting better too. We are doing protein shakes (thanks family) mixing our own ingredients like coconut and almond milk into them.
Got out yesterday for a short drive to look at the changing of the fall foliage. This is my favorite time of year. Cool and crisp temps, colorful trees. Was nice to get out and see her smiling and enjoying the sunshine.
Not looking forward to today’s treatment, but who would be? After we have an appointment with a business for hair pieces. That’s really taken an emotional toll on her. Lori trimmed up the length this past weekend. She knows the biggest fight is with Twisty, but nonetheless its emotional. Pulled back from me some but we talked and worked through it. I could give a damn about looks and all that. She’s my wife and I love her from the inside out. It’s her kindness and compassion, her smile and her playfulness. It’s her love for life and so many other things. But I do get it and understand. I’m really glad we talked about it because she was isolating herself, and in turn I felt alone unable to connect somewhat. It hurts to see her hurting. Her whole life she had long beautiful hair, the last 5-years letting it grey attractively. Then “bam”, Twisty shows up showing its thorns. It’ll grow back more beautiful. Her Auntie made her some beautiful hats and she rocks scarfs.
Retiring from work was emotional for her. Selling our house, losing our savings ($30,000+) to my healthcare issues, going from a decent yearly wage to suddenly below poverty level with social security was a challenge. Unable to work because it would throw us off Medicaid and jack our rent a couple hundred dollars more a month. Even needing the assistance of emergency food banks when things were the worse. It was a tough adjustment for both of us. She was sick when she retired, didn’t know from what at the time, and the candle burning on each end caregiving simply met in the middle. Mentally it was the toughest time of our life. It stripped us of our pride and dignity. In retrospect now it was the smartest decision made. If she was still working, when diagnosed, cobra insurance would’ve sent things into a deeper decent and spiral. We’ve never been materialistic people, only one vacation to Colorado to visit with my sister in 25-years. Our yearly voyage to come up north here, to see her mother and siblings was our high point. We had a nice house but the street we lived on was being ripped up, as well as later learning the soil was contaminated years earlier. Which might be a factor with her becoming sick from gardening in it for so many years. Sure, we could argue in the courts and challenge things. She has cancer, I have heart disease, but we are not about to spend what time we have in life fighting the city over money. We’re just not that kind of people. Things are tough for millions across the globe. You can’t let the tough times depress you or you’d go nuts. It feels like the wheels of humanity in general are in a high speed wobble. We worry more about our kids and grandkids generational problems. We’ve tried to be there for them and believe giving ones time is the most precious gift that can be shared. Have tried to keep our eyes on what’s important and not become distracted by the chaos in the world. When we finally got our new life managed this goes down. We can feel bad about it, or we can deal with it straight on and beat it down. People that know us know which course we’ve taken. We WILL beat Twisty and get back to our simple life. We have a great deal to be thankful for and are. Healthy family and good friends, a really nice home. What more is there in life? We are rich with the things that matter the most.
I share these things to show we are just like everyone else. She had a beautiful career in nursing and was on the end of many prayers while assisting in heart surgeries. Spent her life giving to others. I’ve enjoyed my time running a small family business, freelancing photography, and working with the media in getting positive and inspiring stories put on television and in print.
This is a hurdle. Bobbi is a battler. Always been and always will be. We don’t whine and complain about this and that. We’ve always kept most of our battles to ourselves because we all have them. If you just concentrate on the bad there is no room for the good. Life isn’t perfect for anyone. We make mistakes, get back up, dust your pants off and move on. Hold your head up and do the best you can with what you have.
Kind of rambled some on this post. Maybe just needed to give myself a mental pep talk. It’s going to be a long day. We are grateful to be able to live it and embrace it. There are days in everyone’s life where you question what the heck is so sweet about it. Today will be a good day. Medicine is being received, time with family. We talked about visiting Wisconsin in December, but doctors are advising us to hold off. Bobbi’s immunity system will be venerable to infection and that’s the last thing we need before her Whipple surgery a few weeks later. Depressing but thankful for messaging and facytime. In Spring this battle should be beaten down. Winter is definitely coming…
Well, drove down to Petoskey, arrived exactly at 8:00am. The doctor put off her treatment this week because of her white cell count numbers. Apparently 10,000 is in the right range, hers were over 30,000. Too high to receive the chemo. It also explains why her energy level is so low and she is susceptible to getting sick. She was disappointed not seeing Chrissy but there really isn’t anything you can do about it. When learning of her blood cell count a decision was made there’d be no crowds or visits with people until it’s lower. We drove home and she returned to bed for a bit more sleep. This week off will allow her to start feeling good again.
What a day. Bobbi’s glad to be home but sleep continues to be calling her every few hours. Which is good. Sometimes it’s good for the reason of taking one away from the reality of being awake. She’s had some nightmares so could be a double-edged sword. Yesterday afternoon Lori and Jim stopped by for a visit and it picked her spirits up. Had a few hours of awake time. Then laid back down. She got up at around 8:00pm after a couple hour nap. I kissed her on the cheek and hit the bed.
That’s about what time my own cardiac battle flared up. Knew it was overdue. The last seven weeks finally took its toll and my body told me it was time to shut things down. I put four slow release nitroglycerin patches on and two under the tongue tablets. Oxygen and morphine followed. Palliative care is management mostly. Everything medically has been done. When she came to bed, guess about 10:00, she couldn’t get comfortable and kept shifting around every 15 seconds. She was sore but doing a lot better and so glad we didn’t have to return to the hospital down state the night before. I knew I had to sleep so went and laid down on the air mattress. When I got up and checked on her she had moved from the bed to the recliner. Checked her temp and returned to the bed. At about 2:00 she returned to bed, thought I was still on the air mattress so startled both of us. I climbed out and returned to the air mattress. It was like playing musical beds. She says it feels like someone punched her from the inside out.
The night was long for both. She had nightmares and I fought off the same. I felt like there were four gremlins pulling on my arms and legs downwardly. I didn’t know what the outcome of the night would bring but remember thinking in my head “God, all this is yours, sort it out and be done with it one way or the other”. Fell back to sleep not knowing what the answer would be. Bad dreams filled the night. One had a nurse cutting Bobbi’s ponytail with a table saw.
In the morning I woke up about 8:00 and Bobbi was laying back in the recliner. Awake but exhausted. She started to eat more, as tough as it was so this is a good sign. We talked about the last seven weeks and all they contained. Three ER hospital trips, two hospitalizations, diagnoses, 4 meetings, two different stent procedures, six scans and imaging tests, a port being placed, 3 different cities and 2,000 miles of mileage in the car. We had a good talk. We knew that faith and trying to remain positive, even when your down for the count, had to be the focus. We opened up some packages from friends and family and felt very blessed. Thank you. Haven had time to directly respond but they have certainly helped a great deal.
Lori and Jim stopped by this morning after our talk and it picked up her spirits more. I missed most of the visit because I continued the oxygen and slept after we talked. She’s now sleeping again, it’s about 1:00pm but she asked to be awaken in 2 hours.
So quite the roller coaster. But it feels like the biggest loop is coming in for a rest. I’m slowly lowering the nitro each hour and feel much better. We still don’t have a new family doctor, since our last one retired, but have an appointment on Monday here in the Soo. After having such a wonderful one on Drummond Island we’re hoping for the same. If so it will save a lot of travel time and ferry rides. With winter coming it may be for the best.
Sometimes you just have to keep swinging. Roll with the punches, take a few, but ultimately have to get back up. Neither one of us are quitting anything. Going to simply use this weekend eating right and preparing for another chemo trip on Wednesday. Oh boy, really looking forward to that. Not.
Things are getting better. Doesn’t sound like it but they are. Could be in worse shape, and many others are. Like they say, we all have a mountain to climb, yet it doesn’t need to be conquered in one day. We are a long ways from the finish line. I keep in mind the serenity prayer, and know this too shall pass. Can’t see a rainbow without seeing the storms. She WILL beat this.