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.
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.
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.”
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.
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.
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.
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.
September 17, 2017,
The port where the chemo cocktail during treatments will be put in, here in the Soo on Tuesday. Treatments begin this coming Wednesday, the next day, in Petoskey. Friday was spent there, having lab work done and meeting the doctor that She’d be dealing with. He was a nice man and had a sense of humor. Bobbi liked him so that’s what counts most. Having spent 45 years working in the field of medicine and helping others her instincts were sharp. When he first came in I wasn’t sure, he asked her how she was doing, which she replied “good”, he replied “no you aren’t, you have cancer”. He had a point… but her attitude was good, she had been hurting a lot early, but at the moment good. The doc was about 65, and had a warm smile. I couldn’t image the lives he’s seen in his lifetime. Things are being setup for Wednesday’s. Hitting the road early, when it’s still dark, and returning later in the evening. Side effects would be many. The illness has already made life tough, so two different battles being fought. The disease and the medicine used to shrink the tumor. Nights have been rough. Nausea with stabbing and twisting pain. It’s last about 30 minutes. All I can do is keep her hair out of the fluids her illness is expelling. When she is sweating, cold wash clothes rotated in and out of the freezer. One feels so helpless. Lori invited us out to relax outside of DeTour Village, at their summer cabin, so we drove here after the trip to Petoskey. Her mothers cabin is next door so it was nice to see her and Fred yesterday and for a bit today. Had a nice meal, walked the beach, and sanded away on an old chair being refurbished for her brother Mike. He’s done do much for others that it’s a project many have taken on. The chair, a rocker, was somebody’s pride and joy at one time. But it certainly seen it’s better days. It had been restored to life about five times. Old springs, strings, rope held layers of fabric. The wood and frame is nice, made of hard cherrywood. Yesterday we spent the day on it. Passed time and kept us busy. We talk nonstop, about everything. Then BAM Twisty shows it’s nastiness.
Today we spent about two hours on the beach. The sun is bright and the waves were loud. They snapped at the shoreline in a calming way. We looked across the water and just took everything in. She had spent her early years, sitting in the exact spot, wondering what her future would hold. Now she was here, looking across the water reflecting on how it’s being lived. She laid back on the sand, arms outstretched, looking up at the sky. Her head and arms facing the waves. The white foam of the waves would cease into little bubbles and color the sand a dark wet tan. They stayed about a foot from her head. We listen to the waves. No man made sounds could be heard. Just the earth. A wave suddenly splashed higher on the shore and lightly broke to a calm stream and gently brushed her arms and hair. It was like the Great Lake had blessed her I said. A body of water that has taken freighters and ships down gently touched her. A force that can be so powerful, which has taken real lives, calming her today. She laughed and sat up, hair wet and curly, sand all over, and laughed. Then laid back and welcomed the ones that barely reached her.
She picked up a stick and started to draw in the sand. I asked her to draw what the cancer looked like in her mind. Draw whatever came to mind. It was a twisting barb of a tornado shape to the bottom. When she was done we wrecked it. Getting rid of it like she is going to beat it. She asked me to use the stick and draw my heart disease. I drew a heart, and took black weeds and piled them randomly on and around it. We kicked it away, telling each to go away. It was therapeutic in a lot of ways. We are going to keep the stick of course.
We talked and talked. About the future and the seriousness of things. Her cancer and dealing with my palliative care issues. What we each wanted and didn’t want. We each agreed that when a person dies their spirit is united with the important people who left earlier, and that we’d be able to fly.
It was nice to spend our weekend in such a serene place, among many islands. It’s on the very eastern tip of the Upper Peninsula of Michigan. Today is Sunday and we are working on the rocking chair on and off. Football is on the TV buts it’s mostly background noise. I care little about whose playing and what scores are. I use to read world news constantly and couldn’t go an hour without reading something on the internet. Now, it’s like I really could care less what’s going on in the world. It’s strange that so much can take place in your life, change it, in just a few short days. Short days that have felt like a lifetime. Drawing in the sand together was the right thing at the right time. We were marriage 100 feet away, in her mothers yard. We talked and talked. For some reason she likes me reading to her so this is something new we’ve started. We plan on doing this while her chemo medicine drips into her heart. The book I started to read turned smutty on us, we laughed and said that we doubted I’d read it during treatment. We have a lot different reading material so it shouldn’t be a problem. Plan on reading some books Jen’s mother Carol sent us, and a novel. This is probably our last weekend of nice weather here. The trees are starting to turn colors. So many unknowns right now. Have thought about what to share in these writings and what not to share. Not naming a lot of the doctors and hospital staff to protect their identities. Bobbi and I want to keep the family updated, in addition to it possibly helping others who are going through similar situations down the road.
For we live by faith, not by sight.
2 Corinthians 5:7
September 12, 2017
What a busy week. On Labor Day we packed the car and preceded to Grand Rapids, Mercy Hospital. Bobbi had her CAT done but hadn’t received any information on it yet. Her cancer team in Grand Rapids told us about the “Hope Lodge” a block away from the hospital. It cost nothing to stay there, sponsored by the American Cancer Society. I thought no way. We were a long ways from home and had no idea how we’d afford the journey. Like millions of other families we lived month to month on her social security. I was prepared to simply sleep in the car at night. Wasn’t a big deal. The big deal was what was taking place inside my wife’s body.
The hospital first wanted us there on a Tuesday for a imaging test called EUS for staging of the cancer. This would provide the information that haunted us. The test was completed and the next few days until Friday seemed like an eternity of time. The Hope Lodge was extremely comforting. Everyone there was fighting cancer and were battlers. It felt surreal walking into the doors. A kind lady named Stacy greeted us at the door and took us on a tour. There was a exercise room, reading room, billiards table, and a huge kitchen area for meals. The rooms were nice and very clean. What more could one wish for during this tense time? Guests were able to cook meals. Refrigerators were assigned to each family and one room had shelves stocked with different foods from the kindness of others. We can’t say enough good about this place. Everyone was kind and supportive. Meeting other cancer patients was good. Learning of their own personal battles helped a lot. We certainly all have our mountains to climb. She and her sister Chrissy, who lived about 45 minutes away went out together for the day on Thursday. The visit picked up her spirits and helped pass the time before the meeting. The wait was torture for us. Bobbi was experiencing nausea and stomach pain. The nights were long. Shay is going to school in Australia, which is a 12 hours time difference so it was nice messaging with her in the deep of it. During the day we did the same with Sean and Jen, in addition to Bobbi’s siblings. Each helped us a great deal. Everyone was concerned and supportive. What a situation our family was suddenly confronted with.
On Friday we met with her main doctor, a lady named Jill. She explained the results of the different tests and what our options were. The tumor was located on the top of her pancreas, which was more positive than in other areas. Because it was in this area, blocking her gallbladder duct, Bobbi’s body showed that there was something wrong. The change in skin color, the nausea, the blood sugar numbers bouncing all over the place, not to mention the weight loss. All symptoms that told her to get in and see our doctor. Some people dealing with this type of cancer get little advanced warning. Which in turn makes it more difficult to catch and treat. The CAT scan showed no spreading of the disease. The best course of action would be chemotherapy and then a surgery named ‘whipple’. The goal was to shrink the tumor and stop any cells from spreading, and when it was safe to surgically remove it. We’d began with 2 months of chemo, have another CAT scan, and see if it did in fact shrink the tumor. If so a month would be needed for all the chemo to leave her body and surgery. A major surgery. After this more chemo. A total of six months. Once each week, for three weeks in a row and then a week off. The chemo treatments will take place in Petoskey, Michigan. About an hour and 45 minutes away. On the way home we stopped at Lori’s and Jim’s house for a couple of days. Could think of no better place to shelter us from the storm. She’s close with everyone in her family. Mike and Steve, her younger brothers, and Lori and Chrissy her younger sisters. her father passed away some years back, of cancer, and that is still fresh in everyones minds and heart. Her mother, Betty, are close as well. Its been a very emotional three weeks for everyone.
First a port will be placed into her chest. This is a tube where the Chemo will be dripped into. We are waiting for the local hospital here in the Soo to call us on the date. On Friday we travel to Petoskey for our first consultation visit, in just a few days.
On Sunday we talked with Sean and Jen. They had told the grandkids. We were waiting until we learned more on the battle plan. It must have been a difficult meeting to have. We are a close family and just the word cancer is scary. We made a short video to show them a visual that things were well, and followed up their talk with a FaceTime call. You want to protect the people you love from worry and stress, but at the same time its important to have the children know that this battle will take place and that we are going to beat it. We have some good things in our favor. Catching it early and the location where it the tumor was discovered. We aren’t out of the woods in any fashion. Its going to be a long and tough road. Bobbi’s attitude throughout this has been amazing. There are moments of unsureness, but they’re talked through and discussed. We could sit back and just cry and let the sorrow drain us, or we can put on the armor and get ready for the fight. Jen sent us lots of oils and her mother Carol sent us lots of reading on holistic information. We’re very close with her parents. Every holiday was spent together while living in Wisconsin. Bobbi has chosen to only share the news with a few friends there as well. She doesn’t want people to worry or feel sorry for her. Which I get 100 percent. People will learn in time I’m sure. But right now its a family matter and all our energy is being spent in preparing for the chemo and surgery. Getting our ducks in a roll with insurance coverage and so forth. We’re on medicaid so lots of pre-authorizations and phone calls are being made.
We are choosing to believe that we can and WILL beat this. There is no room for doubt. I can’t began to imagine whats going on in her mind. This is the strongest woman Ive ever met, whose taking on a battle that is going to be beaten. We now have the facts, the battle plan, and now waiting on the first treatment. In the meantime its important to get as many calories into her system as possible. There have been some rough spots of sickness throughout the day and night. Its such a helpless feeling wanting to spare her the pains and be unable. I’ve dealt with over 25 hospitalizations the last 6 years with heart issues. A failed quadruple bypass surgery, and 19 stents put into my heart. Everything medically that can be done has finished. I’m on palliative care for comfort. My battle may help her in knowing that we can do anything we put our minds to. We each look at life differently than just a few weeks ago.