One Year Ago Today

A picture Cinneidi brought up on visit! Thank you!

Hey cancer… SCREW YOU! One year ago today I learned you were in my pancreas. You took my hair, parts of my stomach, pancreas, gall bladder, small intestine (Whipple). We battled. 26 rounds of chemo, and 30 radiation treatments, I’m still standing! You tried to break me, bury me, and destroy me. Not today you monster!

6 chemo treatments to go and the bell at the infusion center will ring!

We haven’t posted for awhile because of tunnel vision on the finish line. I certainly didn’t fight this alone! Family, friends, doctors, nurses, 3 different hospitals, and answered prayers battled this storm with me! Thank you!

Mike –

Yes indeed, one year ago today we learned that Bobbi has cancer. Neither knew what was to come or to be expected. The fight is still on, we’re not going to lift our foot off its neck for one second. What a year. Strange how three words ‘you have cancer’, that took 3 seconds, can change a life so quickly!

A month ago we were sitting at Lori and Jim’s cabin in Detour and talking about how nice of a summer its been. Out of the blue Bobbi says “Best summer ever!” Everyone there was silent for a second. How in the world could this be the best ever for her? We talked about it and she shared because she was still alive and the lens she sees through, with cancer, changed her perception on life. Little things meant more. She’s always found the silver lining in difficult situations but it’s more than that. I’ve witnessed her taking this fight on and never known a stronger person in my entire life. This last month seeing the kids coming up here was a real blessing and exactly what she needed.

Awhile back someone asked me about caregiving. I was like WTF? We don’t use that word. We call it ‘oath keeping’. When we married our vows contained through sickness and health… never once has it been caregiving. With each having our health challenges both have been oath keepers. You don’t just stick around during the good times and hit the road during the tough. What kind of marriage would that be? Nobody ever promised life would be fair and easy. You just have to suit up and swing away. You win some, you lose some, and you keep fighting. Today we’ve got this!

A Challenging Time

The last month of daily radiation and weekly chemotherapy has really taken a toll on Bobbi. A thousand miles a week where each day becomes longer and more draining. There isn’t a whole lot of joy taking place. This is really whipping her out. She calls it a night about 7:30 and begins the same preparations in the morning. She hasn’t had a decent night sleep since the surgery, getting up 3 to 4 times throughout for the bathroom.

It’s tough as hell to watch. She puts on a brave face and cheerful persona with others but I see the toll it’s taking. She shares with me how difficult this experience is. Will be so glad when September approaches. Our life consists of hospitals, doctors, pharmacies, needles, and highway signs. It’s hard trying to keep her spirits up when I’m angry having the one I love struggling. We thought after the Whipple we’d be done with the degree of hardship, but there just doesn’t seem to be an end to them. Bobbi has always done things at 100mph, and gets frustrated with herself after growing tired 5 minutes into a chore. Going on a year soon, and hopefully will turn the page on this chapter. Now mouth sores are developing. Recently had lab work done so hopefully they look alright.

Nobody promised life would be easy and fair, all of us have our mountains to climb. But damn! This is a tough cancer. She’s beating it but it’s taking everything she’s got and then some. Haven’t written in awhile, just going through the motions of living life. Thankful for family and friends love and support. We do find time to laugh and love, but there is an underlying struggle taking place that words really can’t describe. Nights of staying up thinking in the dark, where it’s quiet and calm, I try to make sense of things. Just have to keep pushing ahead. One more day, one more treatment, one more doctor.

Not really sure what to write. Numb from everything. I want her to get better so badly. Days of yesterday’s seem so far away. Having to learn how to live life at the moment is important. You really can’t get too far ahead with plans because we don’t know how she’ll be feeling when something is.

May 18th, 2018

Bobbi – Friday morning and it’s 5:00am, been up 2 hours already. Gotta love the pre-chemo steroid effect. Riding the radiation van has been interesting. The War Memorial Hospital here has a volunteer program where different drivers take people here from the Soo down to Petoskey for radiation. My younger brother Steve is receiving radiation too so the van makes a quick stop near Pickford to pick him up. Certainly feels surreal. We were born on the same day, three years a part, and now each are challenged with cancer.

Wednesday we had a quick ride to Petoskey, all green lights. Got to the hospital and when the elevator doors opened five of us had a quick stride so we could return sooner. I almost chuckled out loud… cancer peeps are a strange breed are we really jogging to get radiated? Thursday is chemo day as well. You know when they wear thick gloves, gowns, and mask and your IV infusion comes in a biohazard bag they’re not exactly sprinkling you with fairy dust. Will get a break from both for 2 weeks then it’ll be the home stretch. 4 additional months of chemo and done, at least that’s the plan. I really don’t know how much longer I can keep doing this if plans change.

May 30, 2018

These times seems endless. Each day that goes by is taking its toll. Just have to get through it I keep telling myself. Both of us keep battling. He rarely mentions his heart issues, is a good bluffer, but takes all of it in stride. Our primary family doctor is moving so we’ll be looking for another at the end of June. The third one since we’ve been up here. Really like the Doctor we have but she is moving to Grand Rapids.

Cancer has literally taken me to the doorstep of death. The great robbery, hair, body and often times strength. At one point I was so ill my breath was cold, my body emaciated. Yet somewhere in the depths of illness is a courage to forge forward. I refuse to surrender, a smile is contagious. Try it, it costs nothing. 10 more radiation treatments to go 20 completed. 5 of 6 chemo treatments done this cycle, for a total of 17 since last year. 28 total sessions by the time things are supposedly finished. Certainly feeling the effects. Successful Whipple surgery didn’t come free of side-effects. Up every morning at 3:00am using the restroom for the next 4 hours. Trying to tweak pancreatic enzymes, diet and still learning what’s tolerable. Sure didn’t sign up for this but we play the deck we are dealt. Days are long and challenging. Mike said give yourself permission to rest, I know he is right but it is foreign.

At least the weather is nice and my flowers are coming to life. Haven’t had much time to enjoy them but it’s pleasant when we sit out and relax. Just feeling so tired and whipped out all the time. Looking forward to seeing the kids this summer. Gotta keep on keeping on! Tomorrow is a chemo day so up early and on the road.

Tattoo

Thought it was time to update family and friends on the next set of plans in Bobbi’s battle. On April 25 we met with her oncologist Dr. C, and in Petoskey, at Karmanos. She was surprised to see her doing so well after the Whipple procedure close to 4 weeks ago. It was nice visiting with the team of nurses, social worker, all who’ve become friends. Bobbi was her positive and cheerful self. We anxiously waited to see what was coming next.

It was decided that it’d be best for her to undergo 6 weeks of daily radiation and chemotherapy once a a week, then 4 months of additional chemo to follow. We spent the night in Petoskey because we had to meet with the radiology professionals early in the morning. Karmanos is an amazing place to have this done. The social worker there presented us with a voucher for a hotel stay that night.

When we met with her radiology doctor he explained the process. Bobbi drank contrast dye, had a CAT scan, and the areas where it was to be administered was tattooed with three separate dots. One on each side of her midsection and one in the center. Appointments were set up to start this coming Thursday.

Twisty, the tumor in her pancreas was destroyed. But it was adhered to her portal vein. Cancer cells left on the portal vein was confirmed by pathology, which is why they are going to aggressively continue treatments.

Bobbi – “Appointments back to back. Wed met with Dr. Coppola to map out my future chemo. 6 weeks radiation with reduced strength Gemzar 1 week x3 then week off with radiation mon-fri. Then 4 cycles gemzar full strength. Well so much for an optimistic 2 months chemo, but now it’ll take us to probably Labor Day. When does it flipping end? Where does the human spirit find the energy to keep going? The well is pretty damn deep and if I hollered down it an echo would surely sound. Thursday I met my radiation oncologist, very nice doctor. Kind and thorough, making sure our concerns were addressed. Pretty sure he is about Sean’s age or younger. After meeting was given contrast dye to drink and IV access for more contrast then off to CT to get my dot tattoos marking the spots for radiation. Hmmm a permanent reminder of my cancer journey, like I needed anything in permanent ink to remind me that I have cancer. I had to bite my lip! They stung!

The next six weeks ought to be interesting. We’ll be riding the Road to Recovery bus, a program the War Memorial Hospital has here in the Soo, with others getting radiation. It leaves each morning and arrives back later in the afternoon.

Mike shared with me a good insight in looking at all this coming up, because it’s discouraging to now have to endure the upcoming daily radiation, and months more of chemo. It’s depressing. He compared the start of this new journey as the last one. When there is a major storm you look at outside and still the destruction taking place and question how in the heck your going to survive it, rebuild, endure. You wonder where your going to find the energy and positive attitude it’s going to take to get through it. Yet, when you venture out after, take things one day at a time, things slowly look better. Not at once, not without hardship, but you survive. Going into the first rounds of chemo, the Whipple, felt like this. There were many WTF moments! It’s taking awhile for my digestive system to heal. I’m on a medication named Creon to help the pancreas break down food better. What type of foods that can be handled is still a hit or miss type of thing.

Thought after the Whipple there’d be less of a battle. Doctor C said she wasn’t going to BS me in saying this would be easy. And we know it won’t. Yet I know I’m going to beat this. Didn’t know how or when in the beginning, but we did. Don’t know how or when we will now, but know we will! It just gets so exhausting digging deep and finding the energy it takes to fight this cancer. We talk a lot, he gives me pep talks when down. I know it’s been difficult on him emotionally and physically but he keeps on going and is the glue of this crazy experience. Everyone’s support and love has played an important part. I’m glad he stayed on me about trying to write what feelings are taking place. It’s helped a lot. Doing good and have to remember we’re only 4 weeks out of surgery. Today was spent digging in my garden and getting hands dirty. A place where I forget about what’s taking place. Wasn’t sure if there’d be a garden this year some months back! Onward we go, Thursday chemo and first radiation treatment. Adds up to about 7500 miles of traveling the next 5 months. Glad it’s not winter!

While we drove to see brother Steve on Sunday we seen hundreds of Sand Hill Crane birds in a farmers field. It was amazing. When different wildlife cross our path I often look up the message to see what they symbolize. This is what was written – “Here in the center of the storm you can see the vortex surrounding you, the vortex is the field of your unharnessed emotions, fears, pain and stored trauma where you can feel lost and overwhelmed and not know how to find your way out.  At the core of all storms is the eye, it is where you see the light has broken through the clouds, this is where the calm waters give safety.  It is here that you have perfect clarity and can see the overriding power of your emotions surrounding you.”

Kind of feels this way right now. A few months off chemo has brought a lot of clarity to everything. After all this the butterfly will soar!”

Bobbi’s View: A Second Chance

DSC07672It’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 –

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.”

Is Twisty Hiding in the Shadow?

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.

You are Loved

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.

Winter is Coming

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October 18, 2017
It’s 1:45am and we leave for the fourth chemo treatment at 6:00am. Mind is racing again with a million thoughts. Bobbi has gradually grown better over the week. No more constant wrenching, pain is under control. Met a Doctor she likes and they are going to keep record of her blood sugar numbers because they are still bouncing all over the place. She is on a sliding scale with injections, 4 times a day. On Monday Chrissy visited from southern Michigan, which was nice. And she will be meeting us in Petoskey later this morning. Her energy simply isn’t there though. She was looking forward to spending more time with family but the energy simply wasn’t there. It’s not like a toothache though. Making a bed drains her. Eating is getting better too. We are doing protein shakes (thanks family) mixing our own ingredients like coconut and almond milk into them.

Got out yesterday for a short drive to look at the changing of the fall foliage. This is my favorite time of year. Cool and crisp temps, colorful trees. Was nice to get out and see her smiling and enjoying the sunshine.

Not looking forward to today’s treatment, but who would be? After we have an appointment with a business for hair pieces. That’s really taken an emotional toll on her. Lori trimmed up the length this past weekend. She knows the biggest fight is with Twisty, but nonetheless its emotional. Pulled back from me some but we talked and worked through it. I could give a damn about looks and all that. She’s my wife and I love her from the inside out. It’s her kindness and compassion, her smile and her playfulness. It’s her love for life and so many other things. But I do get it and understand. I’m really glad we talked about it because she was isolating herself, and in turn I felt alone unable to connect somewhat. It hurts to see her hurting. Her whole life she had long beautiful hair, the last 5-years letting it grey attractively. Then “bam”, Twisty shows up showing its thorns. It’ll grow back more beautiful. Her Auntie made her some beautiful hats and she rocks scarfs.

Retiring from work was emotional for her. Selling our house, losing our savings ($30,000+) to my healthcare issues, going from a decent yearly wage to suddenly below poverty level with social security was a challenge. Unable to work because it would throw us off Medicaid and jack our rent a couple hundred dollars more a month. Even needing the assistance of emergency food banks when things were the worse. It was a tough adjustment for both of us. She was sick when she retired, didn’t know from what at the time, and the candle burning on each end caregiving simply met in the middle. Mentally it was the toughest time of our life. It stripped us of our pride and dignity. In retrospect now it was the smartest decision made. If she was still working, when diagnosed, cobra insurance would’ve sent things into a deeper decent and spiral. We’ve never been materialistic people, only one vacation to Colorado to visit with my sister in 25-years. Our yearly voyage to come up north here, to see her mother and siblings was our high point. We had a nice house but the street we lived on was being ripped up, as well as later learning the soil was contaminated years earlier. Which might be a factor with her becoming sick from gardening in it for so many years. Sure, we could argue in the courts and challenge things. She has cancer, I have heart disease, but we are not about to spend what time we have in life fighting the city over money. We’re just not that kind of people. Things are tough for millions across the globe. You can’t let the tough times depress you or you’d go nuts. It feels like the wheels of humanity in general are in a high speed wobble. We worry more about our kids and grandkids generational problems. We’ve tried to be there for them and believe giving ones time is the most precious gift that can be shared. Have tried to keep our eyes on what’s important and not become distracted by the chaos in the world. When we finally got our new life managed this goes down. We can feel bad about it, or we can deal with it straight on and beat it down. People that know us know which course we’ve taken. We WILL beat Twisty and get back to our simple life. We have a great deal to be thankful for and are. Healthy family and good friends, a really nice home. What more is there in life? We are rich with the things that matter the most.

I share these things to show we are just like everyone else. She had a beautiful career in nursing and was on the end of many prayers while assisting in heart surgeries. Spent her life giving to others. I’ve enjoyed my time running a small family business, freelancing photography, and working with the media in getting positive and inspiring stories put on television and in print.

This is a hurdle. Bobbi is a battler. Always been and always will be. We don’t whine and complain about this and that. We’ve always kept most of our battles to ourselves because we all have them. If you just concentrate on the bad there is no room for the good. Life isn’t perfect for anyone. We make mistakes, get back up, dust your pants off and move on. Hold your head up and do the best you can with what you have.

Kind of rambled some on this post. Maybe just needed to give myself a mental pep talk. It’s going to be a long day. We are grateful to be able to live it and embrace it. There are days in everyone’s life where you question what the heck is so sweet about it. Today will be a good day. Medicine is being received, time with family. We talked about visiting Wisconsin in December, but doctors are advising us to hold off. Bobbi’s immunity system will be venerable to infection and that’s the last thing we need before her Whipple surgery a few weeks later. Depressing but thankful for messaging and facytime. In Spring this battle should be beaten down. Winter is definitely coming…

Well, drove down to Petoskey, arrived exactly at 8:00am. The doctor put off her treatment this week because of her white cell count numbers. Apparently 10,000 is in the right range, hers were over 30,000. Too high to receive the chemo. It also explains why her energy level is so low and she is susceptible to getting sick. She was disappointed not seeing Chrissy but there really isn’t anything you can do about it. When learning of her blood cell count a decision was made there’d be no crowds or visits with people until it’s lower. We drove home and she returned to bed for a bit more sleep. This week off will allow her to start feeling good again.

Home Sweet Home

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October 11, 2017
She was cleared to leave around 1:00 and we are now back home in a Sault Ste. Marie. She’s feeling so much better. Going to keep this short but just wanted others to know that she’s doing good. Was frustrating waiting for the paperwork to be done. Told it would be soon around 9:00am but wasn’t until 4 hours later. She was ready when I came up in the morning.

Proud of her for facing this and dealing with the chemo side effects at the same time. Of course she had her monitors beeping things were wrong every 10 minutes. That has to be as frustrating for the floor nurses as it is for the patients. Never was figured out why it kept alerting that loud beep, but it is what it is and at least she is resting comfortably at home, eating regular food and not drinking the meals. The new stent is larger and shouldn’t cause any more problems. That was quite the scare and ordeal. Looks like we’ll have a real treat tonight called sleep! Thank you for the concerns and support from everyone. Even touched base with friends we knew a few years back that we reconnected with (Julie and Christina). So glad that there is no new tumors and the one being dealt with appears to be going down.

A Time to Heal

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October 10, 2017
Just left the hospital here in Petoskey to go back to the motel. Bobbi underwent another procedure of having a new stent placed into her bile duct today. The last one, inserted in August became dislodged about a week and a half ago. It was plastic and small, this one is metal and will work a lot better. It should be removed during her upcoming Whipple surgery hopefully in December.

It was a painful and difficult week and a half as previous shared. We didn’t know if the pain was from the chemo treatments or another issue. It was this issue. Hard to imagine a device traveling through her system for such a long time. Very lucky we got her in and had things looked at.

What we learned from the procedure was also good news. There is no additional tumors and the one there is appears to be effected by the treatments. The Doctor explained that he wasn’t sure if the tumor had shrunk but did feel it had soften and wasn’t as hard as it had been when he placed the plastic one in. They had to use plastic then because of imaging. This was excellent news! My warrior didn’t want to go in, who would, but did and faced the fast pitch fastball that suddenly became an issue. It was difficult, naturally concerning many, but the problem is now fixed. The battle goes forward. Updating family and friends was time consuming but understood. I know people worry and don’t want that, so no problem. It’s not like I’m blogging while all this is taken place. Simply trying to find the time to assure people that she is safe and taking things on as fast as the problems surface.

Tonight, after she went to sleep I returned to this quiet and lonely motel and decided to update this. My own meds had to be taken and had to eat. We really appreciate the love and support from so many. Thank you.

CC, our grandchild, took the time to send an extremely pretty song with her playing the guitar. It was really pretty. The first time we heard it the music brought tears to our eyes. The expression on her face as she played it was beautiful. I played it for her while her eyes grew heavy and sleep came within seconds. The smallest acts of kindness and love go so much further than one can imagine. Thank you CC. It’s a precious gift.

Was one long day. At the end of it the sky gifted us with a wonderful sunset. Hoping this procedure will make her chemo battles more manageable. I kissed her cheek as she slept telling her she’s my hero. Thank you again for the prayers and support. Too many to list but you know who you are. The ones who didn’t get a chance we know your sending love.

AF76B5D5-D9DA-4AF1-AEBA-4B565AE98A52This is an amazing woman who could have given up and said to heck with it all. If one listen to the internets outlook and statistics many would not have the courage to battle. Every statistic has a positive side, may be slim but it’s there for a reason. We choose to believe we are on the side of positive. Time to end this and get up in the morning and take my wife home. Again thank you.

The Dark Of Night

October 9, 2017
Yesterday was another rough day. It’s Monday, about 3 :00am in the morning and I’ve staying up all night to watch over things. On Sunday morning she got up early, dressed, and was tired walking across the room. Her scalp hurt, skin, mouth. Hair continues to comb out in clumps. Her mood was very down and emotional. I went to the store and got a few scarves and flowers. It picked her mood up some but the day continued to be tough. We sat outside for about 30 minutes and even the sun caused pain on her skin. All the areas where new cells are constantly being made are effected by chemo. The medicine kills cancer cells but also kills good cells that reproduce naturally each day. The pain in her pancreas is not the chemo but the tumor. So the battle was taking place at different spots and different times. Her brother Steve and his wife Debbie were in town, texted to see if she was up for a visit but shared she was whipped out for company. They understood. We watched the Lions play but really didn’t follow it much. She tried to stay awake so she’d be able to sleep tonight.

I had a feeling that her night wouldn’t go well so laid down for an hour about 2:00. Sure enough, it didn’t go well. She went to bed about 9:00 but was up at around 9:30 balled up in severe pain. It was like a 15 on a scale of 1 to 10. No matter what she did it wouldn’t let up. I kept switching hot water bottles for cold. One minute she’d be burning up and the next minute chilled. Her temperature was bouncing all over the place. Tried help with massages, laying with her, providing fresh towels, but Twisty has a mind of its own. After about an hour she fell asleep exhausted. It’s presently about 3:15 in the morning and I just checked on her to see if she had a fever. She was sleeping soundly but temps still high.465EFA25-8C63-4F9B-BB43-FA3CFA22CA2F

What an ordeal. She has a week off from treatments but we may be going to Petoskey anyways to see the doctors. It’s close to a couple hour ride. The pain is just too much. Will be calling again when their office opens to find out. We knew this battle would be difficult, but had no clue what to expect. We are hoping that after the whipple surgery the painful episodes will subside, though pretty sure the 4 months of chemo will still leave her with fatigue and such. At least the tumor will be out, no longer pushing on the surrounding nerves and organs. We’ll learn more about this within the next 5 weeks. Hopefully the chemo is shrinking the tumor so they can safely get to it. It’s pushed against her portal veins so is too risky to attempt right now.

Have no clue what to expect today. The longer she stays asleep the better. At least she is not experiencing these problems then. I know she’ll will beat this but it’s hell watching her go through it.

So many thoughts and concerns going on at one time. There will be better days but at the time it’s like one boxing round after another. Each one leaving a toll. Her weight is slipping because she has no desire to eat, though is because she knows how important it is to be healthy enough to endure the major surgery. A whipple surgery is very complicated, which will be explained later. It’ll take place in Grand Rapids. For today we’ll just take it moment by moment until the darkness of the evening comes.

At about 11:00 her Doctor in Petoskey said to get her in the ER here in the Soo. We checked in, now she has her pain under control and a CAT scan is next. Will know more soon. She wasn’t too thrilled to come here but enough was enough. Could not sit back and watch her suffer. Bobbi’s the type to bite the bullet but in a situation like this it isn’t something to be messed with.

Doctor just came in and explained that the CAT scan shows that the stent they put in her bile duct became dislodged and she’ll be transported to Petoskey by ambulance to have it fixed today. Knew that something was going on. At least it’s not a new mass or tumor! We can handle this one. It’s what it isn’t that provides the relief. Serious but she’ll probably be back home tomorrow. Time to pack the bags and meet the ambulance down there. Thank you for the concern. Onward with the battle.

A Positive Attitude

September 29, 2017
The last couple of days seemed to have bleed into one long one. Bobbi’s 2nd chemo treatment was on Wednesday. We were hoping the side-effects wouldn’t be as severe but unfortunately not. Thursday wasn’t too bad. She got up early and drove over to mom’s apartment for coffee. Each of us probably slept a total of 60 minutes last night. Pain, nausea, muscle aches. This morning I went to the grocery store about 5am, while it was slow. Stocked up on fruits, liquids. Fever running a little high but within range they said to expect. Lori met us in Petoskey so that was very nice. The two made the best of the situation and I tried to give them their space. The area was in a dayroom type setting. Loud and lots of things taking place all over. Lori brought some great pumpkin muffins and that really made her day! All of us went out and had coffee after she checked in and between the time where her chemo was being prepared. Also stopped by an art gallery to deliver a picture Lori painted of Bobbi appropriately titled “Braveheart”. (Click here to see 2nd round of chemo with Lori) The chemo is mixed going by her latest lab work the day before, body weight, and side-effects from last week. An extra nausea medicine was given through her port.

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Had a nice weekend too. Sunday afternoon was nice. We drove over to Mikes house and had cheeseburgers while watching the Lions play on TV. He showed how his hunting cabin is coming along, a short trip from his home. It’s amazing how much work he finished on it since seeing it in July. He is really a good guy. All of her siblings are for that matter. All have called and inquired about how she’s doing. Bobbi’s attitude has been fantastic! She posted a message on Facybook letting friends know what was taking place. Someone had written her a message saying they heard she had brain or bone cancer so she wanted to nip the rumors in the rump right away. Her good friend Jamie is putting an event together, probably in the start of December so it’ll be nice for her to connect again with friends. And seeing family again will really pick up both our spirits. Know it’s difficult having so many miles apart so make short videos when we can. She sure is inspiring. She credits me for showing her how to deal with a health challenge but I can’t take any credit for that! I’d be a mess dealing with what she’s dealing with! She is truly blazing her own trail on this one. How she manages to get through things with a song and dance has me shaking my head in awe. Was a nice relaxing weekend. Not so good at the present moment but we’ll get through it. Love her so much and so glad our paths crossed 25 some years ago! Have added a lot of photography from over the years to these writings and her smile is as beautiful as the day we met. We are now a third away from finding out if the tumor has shrunk, and then the surgery probably in December. Hard not to worry about that. Trying to take things one day at a time. Had some Facytime with Cinneidi and she played the guitar for us, which was really nice!

She did get a chance to relay the experience she had at the War Memorial Hospital last week with the one nurse who said her teeth would fall out. The hospital called and inquired on how the experience went and she shared good except in regards to that ordeal. Didn’t want to mention any names, she’s not like that, but did relay the information. People each step of the way have been very nice. Her support team is strong and she IS going to beat this! Parting words for readers are to keep the faith and prayers coming, and a gigantic thank you,

First Treatment

September 21, 2017
First treatment of chemo began yesterday, a very long day. We were up at 2:00am, both unable to sleep. Loaded our little Prius car and talked about the day before.

The day before Bobbi had her port put in at the War Memorial Hospital in town. The procedure went well, no complications. Her mother and sister-in-law Debbie waited patiently with me. It was good. Her mother, Betty, has naturally been very concerned watching her daughter battle through each step. Debbie and her have kept in to touch as well. Messaging with family kept everyone updated. She has a strong team cheering her on which has helped tremendously. She decided to let friends know back in Wisconsin too. Took a bit because she didn’t want to concern people and such. When we left Wisconsin last year it was sudden and during a rough period. She had a calling to return home closer to her siblings and I was exhausted from so many hospital trips myself. Working all day in one and then having me in and out of it took its toll. It was a difficult decision because of the close relationships in town. The move put distance between her family there and here but I think she knew deep down that she had to return home. Everything happened so fast. It really helped her connecting again with her friends. I contacted a lot of her friends, letting them know about this blog, but I’m sure I missed some. If so PLEASE understand and don’t take it personal. Simply write her a note in messages. She deleted her first account when we left because there were simply too many people neither of us knew listed.

Bobbi’s port, was stitched into the left side of her chest, is where blood can be drawn and the chemo will be slowly dripped into. It was an out patient procedure. Arrived around 9:30, left about 4:00. She got along with all the nurses and doctors. It seems like once they know she spent so many years of her life in nursing that it instantly creates a bond with the same people. She doesn’t bring it up until they ask her if she understands certain things and she then shares with them why she does. There was one nurse that really upset her though. When she was checking Bobbi in she mentioned that she had worked with cancer patients in the past, and told her that her hair would soon be history, that she’d probably wake up some morning and clumps of it would be in her bed. She then added that her teeth would probably fall out eventually too. WTF? That really was a bizarre exchange that left her fighting tears. I was blown away and didn’t know what to say. All her doctors have told her that her hair might thin a little but the chemo used today, for her type of cancer, wasn’t the type used years ago. The nurse had no business telling her this. Shot her chances at a Daisy Award right in the ass.

When we got home her mom and Fred stopped by with supper, which was very nice.

We arrived in Petoskey about 7:30. Our first appointment meeting with her Doc was at 8:30 so we stopped a park a mile away from the hospital. Had a snack and walked around watching the fishermen who were out early along the shore of Lake Michigan.

When she met with her doctor (who is super nice and kind) she shared about the concerns of her hair falling out in clumps and teeth dropping out. He was shocked! He first asked jokingly about the teeth, were they bad? They didn’t appear to be. The hair he said might thin, but it shouldn’t be bad. Bobbi is ok with this. She knows the biggest battle has little to do with hair but really didn’t want to go bald and toothless.

An hour later we had a “teaching” class on the infusion treatment of chemo. A short video, a 30 minute talk with a very nice nurse, and then went to the area where treatments would began. Her medicine would be mixed up, according to her blood work the day before and takes about 90 minutes. We were taken into a nice private room, nice reclining chairs and another nice nurse talked with her the process. When the medicine arrived it would be checked by two nurses to make sure there were no mistakes. First nausea medicine was given through her IV then the first bag would take about 45 minutes with half hour flush, a wait of about a half hour and then the second medicine administered. The room was chilly so they gave her a nice blanket. When the treatment began I moved my chair next to her and started to read a book to her.”The Girl on the Train”. She got tired at different times. Her sisters messaged her and it helped keep her spirits up.

We were done about 2:30, returned to our car and took off for Upper Michigan. She was extremely tired but wanted ice cream. Which was a little strange because she never really cared for it much. Had to stop at a couple places to find it. We have dentist appointments on Drummond Island so drove to her mom’s cabin outside DeTour Village instead of Sault Ste. Marie, where home is. When we arrived she laid down on the couch and dozed off. I stayed up to watch for a fever and make sure things would go well. At about 10:00 all was good and called it a day. The first treatment was started, we now know the procedure, times, and hoping for a surgery in December.

People are concerned about my challenges with the ticker ticking. Have no worries. I don’t think about it and simply manage it with the tools learned and given. There is a lot on our plate and at times each of our challenges collide a little. No one promised life would be easy all the time. It is what it is, and you just keep putting one foot in front of the other. Bobbi is up this morning, moving about, washing clothes, humming, and full of energy. Blood sugar number high but her injected insulin and took care of that. All an all a busy couple days but the sun is shining bright this morning and a thunderstorm last night has made the air outside fresh and the ferry ride to the dentist should be refreshing.  (Click here to see our ride on the ferry)

Dentist went fine but driving back to the Soo it was a rough ride. Side-effects kicked in and made the rest of the day miserable. Is like a terrible flu. It comes on and goes, then returns with a vengeance. Twisty must have started to feel the fight and knows it’s days of running rampant are slowly coming in an end. Difficult watching the one you love go through such difficult times. Lasted throughout the evening. Kept eye on temp. Heat when chills hit, ice when the sweating struck, and mellow easy listening music on to help her fall asleep. Never in a million years did we expect this demon to knock on our door. She ended her career at work so that we’d have more time together, and caretaking working on hearts all day. To now us switching roles and my needing to be there for her, regardless of my cardiac challenge. It’s something that two people growing old together simply do. We take care of each other. We got this. The support of family and friends have been overwhelming. For this endless thanks and appreciation is given. We don’t think about her not making it through this challenging battle. She WILL. We try not to read what the internet says and odds and statistics say and listen to the doctors and professionals. Everyone is different and respond to medications and treatments different. I do believe people do follow their loved ones who lose their battles to broken heart syndrome and know this will be the case on this. We don’t dwell on the negative, have no room or energy for it. She is the kindest and strongest woman I’ve ever met, loved by many, and I truly believe we’ll have many years to come. The word cancer is scary, but a lot of research and studies have been made the last twenty years. It’s the ignorant people, like the nurse at the War Memorial Hospital who said she’d surely lose her hair AND teeth that need to rethink their knowledge and people skills. This is life though. It has its good, bad, and it’s ugly. Take advantage of the friends and family in your life and waste little time on the trivial things. Putting two socks in the washer with only one coming out in the dryer isn’t a reason to complain and moan. Our family may bend during turbulent times but we don’t break. All of us have loved ones hurting in some fashion. Take the time to call them, visit, and simply let them know they are important.

Above all else, guard your heart,
for everything you do flows from it.
Proverbs 4:23

Battle Plan

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August 25, 2017
This morning seemed like I woke from a bad dream. Only it wasn’t. The hospital was only a few blocks away. I was still in a daze. When I got to her room she was sitting up, ordering breakfast. The stent was doing its job, her skin was less yellow and her eyes whiter. Both of us knew there was a battle ahead and concentrated on how we’d tackle this news. At least she felt better from having the pressure relieved inside the gallbladder. The doctor soon came into the room and cleared her for release. Her enzymes were still sky high but should soon get better. Her attitude amazes me. I shared that I had talked with the kids and that it wasn’t an easy experience. We talked about how important it was to stay in touch with them and are committed to it. When she was released the ride home back to Sault Ste. Marie took forever. An appointment was made with our family doctor on Drummond Island, and a CAT scan was ordered at the local War Memorial Hospital. An appointment was made in Grand Rapids to meet with the doctors who’d be involved with this battle. Grand Rapids is about a five hour drive from Sault Ste. Marie. It felt good to get home, though still feels like a bad dream. So much has taken place in just a few short days. Her Mother and siblings were all notified by Lori. Bobbi made a call to her Mother and shared the battle plan. The next step was the CAT scan and seeing Dr. Aldridge on Drummond Island. We’re so grateful to have him for our primary doctor.

Cancer!

August 24, 2017
An MRI was done this morning and the results were not good. The doctor later came into the room and said that his team went over the results and there is a tumor in her pancreas thats blocking her bile duct. He shared with us that his team suspected that it was cancerous. What a eye opener this news was. Hit us like a freight train. He explained that they’d put in a stent, later that day, to open up the gallbladder duct, to relieve the pressure. They would take brushings of it while performing the procedure.

The doctor was very straight to the point and immediately after hearing the news a nurse closed the curtain separating her bed from the patients bed next to her. We couldn’t believe we actually heard the news we heard. Pancreas cancer? There must be a mistake. We each shed tears and tried to make sense of all of it. This was a long way from suspected gallstones causing the problems. We were shell shocked. Her sister Lori came into the room and knew something was wrong when she seen the curtains closed around the bed. When she came in we explained what the doctor said, and I knew it was important that the two spent sometime alone. I took a walk outside in a daze. It was too much coming in at one time. You have got to be kidding me I thought. Pancreas cancer! No, it wasn’t, but yes it really was. As I walked outside the hospital the tears just flowed. I cared little who saw. I knew that she and her sister were experiencing grief and disbelief. When I walked back into the room their faces showed it. Everyone looked exhausted and spent.

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Later in the day they took her into surgery and placed a plastic stent into the area they said. The doctor took brushings from the tumor at the same time, to confirm his diagnoses. The procedure lasted about a half hour. She was sleeping when they wheeled the bed into the recovery room. I took my finger and slowly rubbed the side of her temple as she slept. Slowly she awoke and became more aware of her surroundings. The doctor came in and confirmed that the tumor was about the size of a walnut to plum in diameter. He could give no prognosis until other tests were done.

She eventually was transferred back to her room and we talked about the battle ahead. Her attitude was positive. She said that she was a battler and would kick its butt. It was important to keep a positive attitude and she and Lori tried to put on a brave face. When Lori left Bobbi and I continued to remain as positive as we could. When visiting hours ended it was back to the hotel. I called Shay and Sean and shared the terrible news. They were the most difficult calls ever made. I called my sister Charlie in Colorado as well. I couldn’t believe how everything changes in seconds. I stayed up until late in the night, looking out the motel window in a daze. Traffic and cars continued to pass on the street. The world just kept going, people going on with their lives, and we were wondering what ours now would bring. I eventually fell asleep on top of the bed, not drawing down the blankets or changing. I couldn’t imagine what was going on in her mind. She was a nurse for the last 40 years, recently retiring a year and a half ago. The last 5 years caregiving me, during my cardiac battle, and my  palliative care. It seemed so unfair. Anger, disbelief, shock, grief, all mixed into one feeling. Rage.

Gallbladder Problem?

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August 23, 2017
We got up early, packed a few things and went to the hospital. Her labs had come back from the blood work and her numbers (enzymes) were off the chart. The hospital decided that it would be best for her to be transferred to another hospital down state in lower Michigan, Petoskey. They knew there was a problem taking place in her gallbladder and thought a stent being placed in the duct would at least provide relief, while other tests would be done. I went home, packed some clothes, and met the ambulance there. Her sister Lori I contacted and she and her husband Jim were also present. Because of her unusually high enzymes a MRI was ordered. She was taken off all foods and feed through an IV. Her attitude was good but her discomfort was strong. I checked into a nearby motel because the staff at the hospital said the MRI would be done the next day. I stayed with her until visiting hours ended then drove to the motel, still thinking there was a problem taking place in her gallbladder and hoping they’d figure things out tomorrow. People have trouble with their gallbladders all the time. Sometimes they are taken out, hopefully it was nothing serious and we’d be home later in the day.