Don’t Drop The Rose’

Seen The Guess Who last week. Bobbi’s mom surprised us with two tickets for a night out. A year ago, to the day, Bobbi was discharged from the hospital after undergoing her Whipple surgery. After the concert the car had to be pulled out of the mud by a tow truck though! The right side of the front wheel was parked on grass, and it sank about 4 inches into the soft wet ground. Being a front wheel drive car it only took a couple spins of the tire and there it sat. What can you do? Shit happens. Made little sense to get worked up and upset. It wouldn’t have suddenly lifted the car and float it over two inches. Was a good concert and felt good to get out. The temps here in the Soo finally hit 60 so that’s a reason to celebrate on its own. Bobbi has spent the last few weeks getting her seedling started, and garden area set up. Looking forward to some calm evenings simply enjoying peaceful nights and hearing the freighter horns passing through the Locks. It was one long winter. Nice to have it in the rearview mirror. Though now dodging the pot holes in the road is an adventure. Had great news on the birth of a new Grandson, Jordan Everett Stouffer. Adam and Julie’s world suddenly changed on April 4th. Really happy for them. Believe everyone should experience the love that bringing a child into this world together brings. Wishing the world was a kinder and more peaceful place right now, some interesting times we live in. You really do have to live one day at a time. Turning off cable news and all the talking heads on TV is huge. 

Bobbi and I have talked a lot on the next round of her medical scans and follow-up appointment. She’s decided to not go through with them. She’s said realistically what can be done if the news wasn’t good? Her doctor told her endless treatments of chemotherapy for palliative care if things turn south. The last paperwork from radiology said that spots on her lungs were suspicious for Mets and should me monitored. First reaction was disbelief. Really? After all this? “Might be, could be, believe so…” Have heard it before to only become concerned and stressed of what the future held for false readings. Not going to go there this time. She told her doctor that she wasn’t going to live her life based on one scan after another. If anything could be done in helping her great, but playing whack a mole wasn’t going to be the road she was going to travel. Many assumed after the surgery, radiation, chemo, ringing the bell, that she was “cured”. We knew that wasn’t the case. It’s easy to confuse being done with a set of procedures as the illness being beat. She had exhausted all medical procedures that could be done. She’s in a really good space not thinking nonstop about whether its Mets or isn’t and accepting today for what it is. The good, the bad, an the ugly. Really, all we could learn from this point on is bad news. These are some heavy issues discussed. I support her decision 100%. I did the same with my situation. Have everything available to us that the hospitals can provide. Bobbi said she didn’t need a ton of tests, monitors, needle pricks, to tell us what she already knows. If each of us are happy with today, why enter into different waters? We believe we’re going to continue to beat the odds and so called statistics. Chemotherapy indefinitely would destroy the quality of the life Bobbi is determined to live. Whether its a year or ten years. Ask her how she’s doing and your going to get thumbs up and a smile. She is one tough woman. Yet a hug and understanding with no words exchanged go a long ways. In addition to a few pep talks now and then. She knows what’s going on and is facing things like a warrior. Its hard to read either of us because we tend to put on our best face during the worst times. She’s not giving up or quitting. She’s deciding what’s best for her and what her wishes are. We are looking forward to many things the next few months.

This experience has certainly opened our eyes to a lot of things. The people in our lives are keeping the wheels on the wagon going. Emotions really have to be kept in check. These are tough times for millions of people. I’m all for freedom, baseball and apple pie but a majority of people are living from paycheck to paycheck. You just have to keep on pushing forward though. Have your priorities on the things that matter most in order. It’s a shame what’s happening to families, friends, neighbors when hardships hit. The loss of a job, falling ill, many are quickly drained of lifesavings and poisoned with promises of false hope. Insurance and the price of medicine is a joke and should be a crime. Insurance companies decide life an death decisions that should be left to doctors. I could go on and on. Is there bitterness and anger? Yes, a lot. But so what. It doesn’t change anything. Now the politicians will again start their rants on how “they” will change the system. The system won’t change as long as big money and power are calling the shots. Power doesn’t conceded power too often so not holding our breath on that one. Many live on the hope each day that an accident or illness is avoided. Insurance is simply a coupon. Our most positive experiences have been dealing with the workers on the frontline of healthcare. Most the doctors, nurses, support workers have been a huge blessing. Is it embarrassing? Sure, at times, it sucks telling bill collectors they’ll get what we can give them and no more. I tell them their name is put in a hat and who gets their name pulled out gets a bit. If you call 40 times a day your name won’t even be put in the hat. They could careless about a family already having to skip meals, cut medications, or both. Or their car flashing “service engine soon” is a panic light. Won’t even get started about the telemarketers! A lot of times, out of nowhere, loved ones and friends have changed what seemed like dire circumstances in our world that we had no clue how we’d deal with them. We’ve had to make some tough choices between different things but you do the best you can with what you have. It’s nothing to feel ashamed about. As many have heard, It’s not about getting knocked down, it’s about figuring out how to get back up. That really is what defines a persons character. I’ve witness some unbelievable courage and strength from the woman I’m blessed to call my wife and share our world together. I’ve really grown closer to her family the last few years and it feels good.

Traveling long distances is a thing of the past, physically and financially. There are good days and bad days (not going to get into all that). You make adjustments. You don’t let a bad day or moment define you. What use to really bother Bobbi was hearing “your looking good” (after having just lost 5 pounds and not sleeping for 2 days). She understands it now. Compared to past pictures and videos being on deaths doorstep it’s certainly true. She takes it as the compliment its meant to be. Would you rather hear “man, you really look like crap today”? Do the best you can, tackle each day with faith, wear your chains with grace, and believe you will get through whatever life throws at you. Not an easy chore at times. It’s about attitude and being unafraid to tell your challenge “screw you, not today”! And before you know it you go to bed and start the process all over again. The impacts of our family and friends is what heals the heart the most! A short message, a call, card, go a long way. Allow yourself, and loved ones, the time and space to comprehend everything. There is grief, anger, sorrow, victories, life is a rollercoaster. Know when your on calm waters because you can be assured your boat is going to take on water at some point. 

And finally, if you know someone battling a health issue, a loved one, friend, don’t feel sorry for them or define them by their circumstance. Simply love them and know each person is a temporary gift in each others life. Don’t let petty gripes turn into long drawn out battles. Don’t let the fruit rotten before its picked and we heard from someone important to us not to drop the roses that come your way. Look for the good in others and speak up for the ones who have no voice. This is our last posting so thanks having followed and encouraging us. Hoping something will help another when their boat takes on water.

Keep On Keeping On

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!

Happy Holidays!

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.

The Bell

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.