Time to Battle!

 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.”

Chemotherapy Indefinitely… WTF

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.

Bobbi:

“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.”

The Big Wait

Things going from one appointment to the next. Learning this week more information and clarity. Bobbi’s going to start writing and these will be included in this blog.

Bobbi:

“Cancer I hate the word. It has stolen every hair on my body . Chemo the magic potion brought to infuse into my body in a bio hazard bag with nurses gowning gloving and wearing masks I know it is toxic. Yet the toxicity of the chemo is what I am relying on to kill my tumor. They tell me I was fortunate one of the 5% to catch it early. Which they now tell me I have spots on my live. WTF. My instincts told me it was my pancreas. You don’t get urine looking like a quart of motor oil and look like a gilded lady for no reason. Blood sugars out of control. I knew I had cancer before I got a diagnosis I just kept it to myself. You always want to spare those you love from pain they don’t deserve. I think I knew for a long time cancer would be the card I would be dealt in a deck that was stacked. They say life isn’t fair you worked your whole life helping others. To me that was my gift my earthly reward. I have had many gifts my husband whom many had turned their backs and hearts on, how lucky was I despite being ill he has made me feel precious and beautiful. He is not afraid to rub my bald head and make me feel beautiful. I love our children. Shay such a special daughter. I may not have given birth to but she reminds me of myself at a younger age. Not afraid of adventure always striving for perfection and not feeling you are perfect just the way you are. What a gift our special Christmas Charlie Brown tree tied to a curtain rod because ornaments were heavier than the tree. Drinking wine together talking and all during a power outage. The three of us just trying to stay warm in one of the most isolated places on earth. Most people think of DeTour as a different road route yet that is where we were. DeTour Michigan across the road from the mighty Lake Huron. Snow thigh high billions of stars and silence that is deafening. I like her rebel spirit and her wanting to make a difference. I get it she will do great things she has a heart that has endured unimaginable pain from an early age . She is a warrior like her dad and I. To not be bitter amidst life’s challenges . I get angry when I think how such a sweet soul had such tribulations. I think of my moms life losing parents at 18. Fair hell no another survivalist. The bricks in life are hard to endure at times but I will fight. I have love all around me. I have family which some were robbed of at an early age. We are not perfect human beings by any means but we do our best.

Thinking lots about family and friends in Wisconsin. Gotta keep the fight going!”

Hopeful

One day at a time. The last 4 days have been a living hell for Bobbi. The side effects of the chemotherapy peaked and tried to broke her mentally. They said to continue the treatments until they become intolerable and that’s what it’s become. This is her week off, with another scan this week and a meeting next week with doctors. Which is when she’s going to have her schedule changed regardless what the outcome of the tests show. Markers were done last week, so will know more on that additionally. It certainly been hell week though. Last night in bed she broke down and just let the tears flow from the pain and mental anguish. Said she didn’t recognize the person in the mirror. The steroids, the loss of what little hair she had grown falling out again. All I could do was hold her and keep medications on course. It’s not the cancer that’s causing it, it’s the drugs that are attacking it. The cancer pain is there, where the tumor is, but the majority is chemo related. The 1st treatment, to the 12th, gradually brought on more issues. It’s so disheartening to witness. Then dealing with insurance changes in the midst of it, which are now slowly getting figured out and organized, didn’t help. Bobbi’s always been very organized with keeping track of bills and us getting things paid. When a wrench is thrown in the mist it becomes overwhelming. We’ve had good long talks about not letting numbers overlap the mental health that her body and mind need to heal and fight. Numbers are numbers, no matter how many zeros are attached. I write letters with payments and show attempts are being made but we certainly are not going to starve to try and keep things from the red zone. We’ve tapped into a lot of different cancer assistant programs, working with financial institutions, and it’s slowly bring that stress level down. Knowing that we’ve reached the intolerable phase with the treatments, and things will be backed down, is a relief. It was one hell of a ride. It’s always one more scan, one more lab, one more doctor, one more needle, one more car trip. Winter storms of ice and snow didn’t stop us. We pushed forward with her sleeping after treatments. I keep my eyes looking forward and deal with the unknown ahead with tunnel vision. There are going to be brighter days. And there will be new battles and storms. But there is no quit. Period.

I was in a very dark place to last couple of weeks. Detached from a lot, turned the damn news off, and tried to put things back in perspective. It’s hell watching someone you love go through so much, and even more difficult when managing severe heart issues and taking 10 different medications. It is what it is but has taken its toll. With spring soon arriving, it feels like the cocoon is starting to crack and a beautiful monarch is going to emerge with Bobbi. It may be false hope that’ll be slammed with the results of new tests this coming week but it feels like some easier days are ahead. Knowing she will behaving less treatments, which will in turn bring much needed relief to her is a good thing. It was like a high fever finally broke, for now. Today we kept it simple. Visited her mother who had a total hip replacement done a little over two weeks ago then went for a nice drive.

What to Say When You Meet the Angel of Death at a Party

Bobbi and I read this and thought a lot of things were good descriptions. She’s doing well with today and we don’t dwell on tomorrow. Thank you for the read. Took a break for a bit but will soon be sharing again.

After years of living with stage IV cancer, I have some suggestions. By KATE BOWLERJAN. 26, 2018

DURHAM, N.C. — EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.

When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.

So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”

It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.

I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.

“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.

“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.

We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.

A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.

Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.

This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”

The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.

What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.

The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.

My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.

Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?

Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.

The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”

The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.

There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.

A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.

After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.

But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”

 

https://www.nytimes.com/2018/01/26/opinion/sunday/cancer-what-to-say.html