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.

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 –

Home

We returned home on the Monday evening, after 2 weeks in Grand Rapids, Michigan. Bobbi is healing excellently. The Whipple procedure went very well. Having Sean here has been a big help! The stay at the Hope Lodge, which we’ll be featuring in the next post was amazing.

We met with her surgeon before returning home and she explained what the results of all the pathology were. Here pancreatic tumor was beaten down to the size of a grape from the intense chemotherapy regiment, and removed. It once was the size of a walnut. 29 lymph nodes were taken out, all negative for cancer cells.

The tumor was stuck to her portal vein so there are a couple of cancer cells still adhered to it. Bobbi will now undergo 2-3 more months of chemotherapy, in addition to 5 weeks of daily radiation to whip these out. This will take place 4 to 6 weeks from now. The procedures will take place in Petoskey again. Her surgeon is an amazing doctor and she called Bobbi her “Rockstar”.

Intake of food is a hit and miss type of experience. Some cause nausea and doesn’t stay down, but considering the type of operation this isn’t unusual the surgeon said. It’ll be awhile before things settle. Her diabetes has improved since the operation. On Sunday we visited with her sister Chrissy and her husband Jeff. It was a well needed visit! It was nice to get away and enjoy their company. We also had an opportunity to visit with her niece and her kids! It was a cheerful time. When Bobbi became tired we returned to the Lodge and went to bed early.

We are feeling optimistic about everything. Today I went shopping for nutritional soft foods, supplements, and called her cancer team in Petoskey. Her appointment there will be on April 25th. Will be a consultation visit and to set up appointments for the future.

When we got home cards from friends filled the mailbox! Thank you! She is doing well, sleeping right now, but we’re slowly getting back into the groove of things. I can’t express enough how helpful it’s been to have Sean here! There were a lot of positive things that took place and having him here with us has definitely been one! Steve, Bobbi’s brother, also underwent major surgery for cancer a couple days after hers and is home now too. What a couple weeks of unsteady waters.

We are feeling very grateful for everything and everybody. The next couple of months will be challenging but it is what it is. Got to roll with the great news, think positive, get rest, and take on the next pitch. Told her we’ll be home soon and that’s where we are now! Home!

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.”

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.

Screw You Cancer

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Bobbi was holding onto my side as our old motorcycle was flying down a hill. I asked her about stopping for breakfast and then realized I was dreaming. It was 2:00am in the morning, she had her arm around me, wide awake. It sure felt real. I rolled over and asked why she was awake, told her my dream, and before I knew it we were sitting in our living room having coffee. Her 6th Chemo was yesterday and we traveled through two snowstorms on the journey south and coming back. Roads were icy and winds gusts of 35mph were reported. We knew that snow was expected, the TV announced winter storm warnings for the last two days. Had to make the trip though. Roads were terrible but Twisty has got to go. The treatment went as expected and the cocktail absorbed. We now wait until a scan in two weeks to see if she can have the surgery performed. The scan was planned for Monday but the powers to be want to see the full impact of todays treatment. If the tumor in her pancreas shrunk then surgery will be about 30 days from today. We’re hoping so. How screwed up is this? Hoping to undergo a Whipple procedure. WTF. But it is what it is and messed up choosing this fighter to mess with. She is determined to kick its butt no matter what.

So here we sat, up at 2:00. Years back it was our bedtime! Bobbi, out of no where brought out the hair clippers and said let’s do this. A half hour later we each had bald heads. Screw you cancer! You will not have the power today, not EVER. We may look like a couple of eggs to others, but have a battle at hand and will not give it the upper hand. Period.

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Bobbi’s friends and family, people she never met, are amazing. A once lonely struggle has evolved into one where many have lit their candles, said their prayers, and are sharing their love.

She shared the photos with friends on Facybook, and tweeted them out on our 100,000+ strong Twitter account (see here) She looks and is beautiful. Hair, no hair, matters little at this time. A simple haircut empowered her and wasn’t emotional in any way. We are talking life and death and the later is unacceptable.

I don’t know when a full nights sleep will return. I want so badly to swing my fists at this terrible disease. Beat it to a pulp and then take the boots to it. I stopped the wondering of why and not possible. We are not going to back down and feel pity. Many are climbing their mountains and life isn’t easy for any of us. Life certainly isn’t for the weak. If so it’ll run over you and bring you down. When push comes to shove everyone has the power to give it their best shot. Amazing things can happen when you believe and take a no prisoners attitude. It may start out by knocking you out, and down, attempt to strip you of your dignity and faith, but you slowly get back up, even if you can’t see straight and unsure if you can stand, and fight. May lose a few battles, but will win this war. May bend in the wind but not breaking. Screw you cancer. Not today.

An Unlikely Couple

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Bobbi is still doing well. The last chemo treatment on Wednesday, she shared wasn’t as bad as the prior ones. She had become so sick after the plastic stent dislodged in her bile duct, but at the time didn’t know that the problem was that. After doctors replaced the plastic one with a metal one things improved dramatically. The body aches, fatigue, hair loss, still exist but knows it from the poison being dripped directly into her port and then heart. I compare this experience like a hurricane. Things are calmer, but the next storm is the whipple surgery about six weeks away. A major surgery that we’re preparing her body for with nutrition. She’s lost a lot of weight during the first battles but has started to put it back on. Night time seem to still be the challenge. I just lay with her and lightly hold her and tell her how proud I am with her, and how many people are in her corner and love her. She WILL beat this. They say pancreatic cancer is a tough battle (as is every illness is) but this is one tough lady. She has never once complained or whined about “why me”. She worked over 40 years in the medical field and knows illness is like the flip of a coin in who and when someone’s life is suddenly changed by it.

I’d like to take time to share a little about this woman. I think we tend to put some people on pedestals. Parents, spouses, family in general. It’s not a bad thing, but it’s a lot of unrealistic expectations and pressure on them. I’ve always called Bobbi my angel. Sounds corny, I know. But I do believe all of us experience someone that makes a big difference in our lives at a time when we need it the most. It can come from many different directions and ways.

When they say opposites attract I tend to agree. Our paths crossed in 1993. I was aiming up a shot on a pool game, at a speakeasy (a place with music, drinks, darts, pool, etc…) and right before I pulled the trigger on my shot this hand swept in front of my eyes with a voice telling me “don’t take life so seriously”. Needless to say my shot skipped the cue ball in a crazy direction and I loss $100 on the game! Wasn’t exactly too happy about it. When I looked up at the person whose hand disturbed me she was walking away to the jukebox, I joined her and we started to talk about the selection of music that was available. We combined quarters for the machine and just started talking. She was there celebrating with friends from work. I was there to shoot pool. Neither one was looking for a “relationship”. We just got along well. We later said goodnight to the other, but all week I kept thinking about her. When Friday came around I returned to the same place, and was happy to see her again with friends. We spent time together talking and playing music. To make a long story short, at the end of the evening I gave her my phone number, saying it’d be nice to take her out sometime. Told her I was giving her my number so I wouldn’t look like a stalker or something. She laughed and did call me later in the week. We agreed to go out the following weekend for supper.

I thought, from her thin frame she’d be a salad gal. Wrong! She started ordering things I never heard of. I was a little concerned about having enough money so not to end up having to wash dishes there. Excused myself and went to the restroom to look in my wallet and see. We were safe. At the time I worked in a printshop, as a pressman, and didn’t make a lot of money. We chuckle about it now with fondness. Must admit It was a concern at the time though.

We slowly developed a strong friendship, over the next few weeks and months. We were as opposite as two people could be. Bobbi was very kind, responsible, and orderly. She grew up in a large family, in small cities in Michigan. She was funny and had a real sense of humor. I, on the other hand, stayed out too late and was trying to find my footing with being responsible. We each had children and they were our main concerns.

She grew up on one side of Lake Michigan and I on the other in Wisconsin. At nine the county my family lived in decided it was best that I’d be removed from my home and subsequently bounced around from foster homes and institutions. I won’t get into what family issues we’re taking place, but I heard the words “your a retard” many times. My challenge was later diagnosed as having Asperger. In the 60’s the systems answer to people with mental health issues were to lock them into institutions. My challenges at the time were many. I didn’t communicate with others well, was removed from every school attended, ran away from all the different places, often to big cities like Chicago and Milwaukee, and sensory and language issues. I wasn’t aware at the time of the clinical labels (always believed labels were for cans of soup). I don’t remember a lot about many things. Little pieces of information. Seeing a speech therapist, fighting on school playgrounds, and a lot of dark hallways with doors lined up going down them. Also little paper cups with different medications with M&Ms mixed in.

When my 18th Birthday arrived I was suddenly faced with society and trying to figure out a way to fit in. Things didn’t turn out to well (a few years ago CNN news featured the hardships and turn around with a story ran on Christmas Day, to view click here)The piece was about the friendship developed between a rookie social worker and I that still exists today. It helps explain how opposite Bobbi and I were when first meeting. I was honest with her about everything from the beginning. I didn’t trust people, I drove motorcycles too fast , was in a club for for awhile. Didn’t like the direction it was going and knew our relationship would change. Been there, had the t-shirt (or colors) and I was growing up and knew I had the right partner I wanted to spend life loving and laughing with. Left all of it behind the closer we became. The thing about the type of club I rode with is that one is always doing another’s agenda. There are things  I’m not proud of, not in anyway, but a testimony on the power of what real love can do. I use to tell her that I’d leave me in 5 minutes quick in the beginning!

Her acceptance in me, when I didn’t even believe in myself. Her family and friends doing the same. It opened my eyes to a different world. I knew though that I had to find the road to redemption in some way. Since there was no easy entrance ramp one had to be made. I decided, with Bobbi and even our granddaughters assistance, to attempt to help one person, or nonprofit organization, a kind act each week for a year. Never using our names during the times while writing about it. I knew I could do little about the passed, more less control the future, but I could try (This project can be read about on this link). We called it “The Sequoia Project”. Have always enjoyed photography and writing (thank god for editors and friendships with many writers.) Just self taught with the study of letters of ” writing”. I’ve also used to communicate with people most of my life. Even received a personal letter from the President. That was quite the experience. I was mentoring with troubled kids and used to as a teaching tool. You just never know the outcome of taking one step in front of the other and never being scared to try. President Obama, regardless of ones political beliefs, was an inspiring man. He shared that we inspired him! The most powerful person in the world, on a real level. The project was also felt like a true road of redemption I felt I needed to travel.

The experience , making the sequoia project journey, opened my eyes even further to the world around us. It lasted longer than the planned year. I had seen the worst of humanity and instead of adding to it her love changed me into wanting to help better it. Which I tried to do. Each week something new. It’s very difficult to explain. It follows me to this day. Years later I’d get a letter or call telling me a kid I had once worked with had graduated from school. I stress to them education is a gift and tool to raise up and at least put a sail in their ship. How far or what direction would a sail lest sailboat go? The better the sail the more options you’ll have. I share with them my story, far from an angels, and how a person really can change their lives.

Why did this woman jump into the project with me? I was use to others helping others for hidden motives. I share this story to help readers understand what kind of person she is. She is very independent and not naive in any way. The last 15 years of her career she worked helping in heart surgeries! Little did we know later I’d be a patient, but a lot is kind of Shakespearest. Doubt that’s a real word but should be. Each February try to give a shout-out for cardiac health. This unique story was shared during cardiac awareness month a couple year back on TV (see on link if interested).

We’ve been through a lot the last 25 some years. Opened a small family business, a professional tattoo studio and lived a simple life. Vacations were to spend time with family. Never flew off somewhere together and had umbrella drinks in the sand, lol. We’ve lived each day taking everything in.

It’s difficult to open up about so many personal things. But doing so helps the person doing so, and others who may find the courage to do so. We all bleed red in this world, have struggles and victories. We all fall down at times, but it’s what we do with our spills that matter the most. Do we lay in the mud and cry about injustice or do we own it, dust off our knees and get back up smarter and wiser? These writing are about Bobbi’s struggles and successes, but I wanted to try and share the kind of person she is. I know she will beat this. She has overcome many things in her life, with many more adventures to come. I truly believe in angels. They are around us. We just have to have our eyes and hearts open to see them. Thank you again for the many prayers from family and friends.

Doing Better

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On Wednesday we left Sault Ste. Marie at 6am, for Petoskey for Bobbi’s fourth chemo treatment. One of the medicines hadn’t arrived at the hospital yet, because of extreme weather the day before. Treatment was delayed about an hour so we returned to the car and took a nap until it did. Actually seen the UPS driver come in with a cart of boxes delivering it. We first met with her doctor and went over what type of week she had and what her lab numbers were. The white cells had dropped some, into the 20,000 range but he felt it was safe to have the treatment.

She went through it like a pro. Was pleasant to everyone and the doctor even mentioned she was the high point of his day. It still amazes me how brave and good humored she remains. The last couple of weeks had taken a beating on her body, the last a lot better than the week before.

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The night was restless though. Though she had little memory of it. I stayed up on and off to make sure things stayed alright. She ran a little of a fever but didn’t get sick. Her blood sugar numbers continued to bounce all over the place. Between 200 and 500.

The next day she was up early and continued with her plans on going to DeTour with her mother to see her sister Lori and said she felt fine. I stayed back and cleaned the house and caught up on some sleep. When she got back early evening she said she was tired but had no problems. Which was great news. The chair that her sister and her were working on they drove to her brother Mikes house and gave it to him. He was really appreciative for it. The guy really is a great brother-in-law. He’d give the shirt off his back to anyone and it was nice to see the family work on a project making him happy. He does so much for everyone, his brother Steve and wife Debbie too, and never asked for anything in return. All of her family is like this. That’s why I believe she knew she was ill when we moved from Wisconsin, so she could be with her mother and siblings during this challenging time. When night came around it was as restless as the one before. Tossing and turning every few minutes.

Today it was like she was in a chemo fog. Nodding off to sleep one minute and up the next. Kept things very simple. I did some clothes, went grocery shopping for items she liked, and kept my eye on her without hovering. She stayed on her nausea medicine and didn’t get sick at all. Was just out of it though. The chemo really takes its toll on a persons fatigue. She ate good but again her blood sugar numbers were off the chart. Our new family doctors office called and put her on more insulin too. Didn’t seem to matter and will be something we’re going to stay on top of. Know it has a lot to do with her pancreas, which is where the tumor is, and is a real concern.

She has two more treatments until they do a CAT scan to see if the tumor has shrunk enough to do the whipple surgery on it. If so it will probably be scheduled around the middle of December. That’s what we are hoping for. Get Twisty the hell out of there. There will then be four more months of chemo after she heals from the surgery.

She is doing well. Every day feels like the same and the days in the week are nameless. It’s taking things one day at a time. Her attitude is good but it frustrates her not having her usual energy, it’s a blessing that it was the stent that appears to have caused so much turmoil the past few weeks and not a result of the chemo treatments. This is at least tolerable she said. It’s good to see her eating. I try to do everything that physically needs to be done so that she can simply concentrate on resting and making it through her day with as little problems as possible.

We continue to talk a lot and voice our concerns on the seriousness of things. Try not to worry or get to far ahead of ourselves. It’s really tough being so far away from our kids in Wisconsin and Shay in Australia but not much anyone can do about it at this time. Know it’s just as difficult for them. She wanted to make some calls tonight but was to whipped out.

I’m doing the best I can with what I have to work with. The worry is constant and waiting for anything has always drove me nuts. It’s good to no longer see her in physical pain, needing no medications for it. She is pushing on. Weight loss is an issue so we are doing what we can about that. Things take time. We want automatic answers and quick fixes. This is a whole new ballgame though. It’s reassuring to see her cancer team and new family doctor staying on top of things.

What also amazes me is how life can suddenly change so quickly. One minute all is well, and the next it’s the complete opposite and your fighting for your life, literally. I experienced this with emergency bypass surgery, and then she went from possible gallstones problems to a cancer battle. It seems like a million years ago when life was simple and watching freighter ships pass by. Sitting by a campfire and joking, then to ambulances and IV tubes and beeping machines. She is a determined spirit and a positive person. When she went to bed tonight, at around 8:30, I laid down with her for about a half hour just holding her and lightly massaging her shoulders and back, kissing her lightly on the back of her neck, listening to her breath. She shifts around every few moments. Unaware of it though. Last night she got up about three times and barely remembers.

Nobody knows what our tomorrows hold. Things change so quickly. If I can relay one thing to others it’s the importance of taking in all the good and meaningful times with loved ones. Forget the petty arguments and just work things out with compromise. You never know when serious challenges will be at your door, trying to break in and and create havoc. Tell the people who matter that their important, don’t wait until tomorrow thinking that it’s a given. Life is just too short to get caught up in things that really don’t matter. When butting heads with strangers try to take just a couple seconds thinking what mountain they may be climbing. One thing the world needs more of is simply kindness and compassion. At times it feels like everyone is screaming at the other about their views and beliefs, demonizing the ones who feel or think different. Just agree it’s okay to disagree and move on. We all seem to have a few things in common if we take the time to listen. Trust me, it can and does change with one doctors visit or in one single heartbeat. We never think terrible things will happen today, until they do.

Bobbi is resting peacefully and that okay for the moment. We’ll deal with the next moment as soon as it arrives. Again thank you for the concern many have and are showing. Both family and friends. Hopefully there will be a time where we can help you during your rough roads. Really, isn’t that what life’s all about?

Faith

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What a day. Bobbi’s glad to be home but sleep continues to be calling her every few hours. Which is good. Sometimes it’s good for the reason of taking one away from the reality of being awake. She’s had some nightmares so could be a double-edged sword. Yesterday afternoon Lori and Jim stopped by for a visit and it picked her spirits up. Had a few hours of awake time. Then laid back down. She got up at around 8:00pm after a couple hour nap. I kissed her on the cheek and hit the bed.

That’s about what time my own cardiac battle flared up. Knew it was overdue. The last seven weeks finally took its toll and my body told me it was time to shut things down. I put four slow release nitroglycerin patches on and two under the tongue tablets. Oxygen and morphine followed. Palliative care is management mostly. Everything medically has been done. When she came to bed, guess about 10:00, she couldn’t get comfortable and kept shifting around every 15 seconds. She was sore but doing a lot better and so glad we didn’t have to return to the hospital down state the night before. I knew I had to sleep so went and laid down on the air mattress. When I got up and checked on her she had moved from the bed to the recliner. Checked her temp and returned to the bed. At about 2:00 she returned to bed, thought I was still on the air mattress so startled both of us. I climbed out and returned to the air mattress. It was like playing musical beds. She says it feels like someone punched her from the inside out.

The night was long for both. She had nightmares and I fought off the same. I felt like there were four gremlins pulling on my arms and legs downwardly. I didn’t know what the outcome of the night would bring but remember thinking in my head “God, all this is yours, sort it out and be done with it one way or the other”. Fell back to sleep not knowing what the answer would be. Bad dreams filled the night. One had a nurse cutting Bobbi’s ponytail with a table saw.

In the morning I woke up about 8:00 and Bobbi was laying back in the recliner. Awake but exhausted. She started to eat more, as tough as it was so this is a good sign. We talked about the last seven weeks and all they contained. Three ER hospital trips, two hospitalizations, diagnoses, 4 meetings, two different stent procedures, six scans and imaging tests, a port being placed, 3 different cities and 2,000 miles of mileage in the car. We had a good talk. We knew that faith and trying to remain positive, even when your down for the count, had to be the focus. We opened up some packages from friends and family and felt very blessed. Thank you. Haven had time to directly respond but they have certainly helped a great deal.

Lori and Jim stopped by this morning after our talk and it picked up her spirits more. I missed most of the visit because I continued the oxygen and slept after we talked. She’s now sleeping again, it’s about 1:00pm but she asked to be awaken in 2 hours.

So quite the roller coaster. But it feels like the biggest loop is coming in for a rest. I’m slowly lowering the nitro each hour and feel much better. We still don’t have a new family doctor, since our last one retired, but have an appointment on Monday here in the Soo. After having such a wonderful one on Drummond Island we’re hoping for the same. If so it will save a lot of travel time and ferry rides. With winter coming it may be for the best.

Sometimes you just have to keep swinging. Roll with the punches, take a few, but ultimately have to get back up. Neither one of us are quitting anything. Going to simply use this weekend eating right and preparing for another chemo trip on Wednesday. Oh boy, really looking forward to that. Not.

Things are getting better. Doesn’t sound like it but they are. Could be in worse shape, and many others are. Like they say, we all have a mountain to climb, yet it doesn’t need to be conquered in one day. We are a long ways from the finish line. I keep in mind the serenity prayer, and know this too shall pass. Can’t see a rainbow without seeing the storms. She WILL beat this.

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.

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

One Day at a Time

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September 17, 2017,
The port where the chemo cocktail during treatments will be put in, here in the Soo on Tuesday. Treatments begin this coming Wednesday, the next day, in Petoskey. Friday was spent there, having lab work done and meeting the doctor that She’d be dealing with. He was a nice man and had a sense of humor. Bobbi liked him so that’s what counts most. Having spent 45 years working in the field of medicine and helping others her instincts were sharp. When he first came in I wasn’t sure, he asked her how she was doing, which she replied “good”, he replied “no you aren’t, you have cancer”. He had a point… but her attitude was good, she had been hurting a lot early, but at the moment good. The doc was about 65, and had a warm smile. I couldn’t image the lives he’s seen in his lifetime. Things are being setup for Wednesday’s. Hitting the road early, when it’s still dark, and returning later in the evening. Side effects would be many. The illness has already made life tough, so two different battles being fought. The disease and the medicine used to shrink the tumor. Nights have been rough. Nausea with stabbing and twisting pain. It’s last about 30 minutes. All I can do is keep her hair out of the fluids her illness is expelling. When she is sweating, cold wash clothes rotated in and out of the freezer. One feels so helpless. Lori invited us out to relax outside of DeTour Village, at their summer cabin, so we drove here after the trip to Petoskey. Her mothers cabin is next door so it was nice to see her and Fred yesterday and for a bit today. Had a nice meal, walked the beach, and sanded away on an old chair being refurbished for her brother Mike. He’s done do much for others that it’s a project many have taken on. The chair, a rocker, was somebody’s pride and joy at one time. But it certainly seen it’s better days. It had been restored to life about five times. Old springs, strings, rope held layers of fabric. The wood and frame is nice, made of hard cherrywood. Yesterday we spent the day on it. Passed time and kept us busy. We talk nonstop, about everything. Then BAM Twisty shows it’s nastiness.

Today we spent about two hours on the beach. The sun is bright and the waves were loud. They snapped at the shoreline in a calming way. We looked across the water and just took everything in. She had spent her early years, sitting in the exact spot, wondering what her future would hold. Now she was here, looking across the water reflecting on how it’s being lived. She laid back on the sand, arms outstretched, looking up at the sky. Her head and arms facing the waves. The white foam of the waves would cease into little bubbles and color the sand a dark wet tan. They stayed about a foot from her head. We listen to the waves. No man made sounds could be heard. Just the earth. A wave suddenly splashed higher on the shore and lightly broke to a calm stream and gently brushed her arms and hair. It was like the Great Lake had blessed her I said. A body of water that has taken freighters and ships down gently touched her. A force that can be so powerful, which has taken real lives, calming her today. She laughed and sat up, hair wet and curly, sand all over, and laughed. Then laid back and welcomed the ones that barely reached her.

She picked up a stick and started to draw in the sand. I asked her to draw what the cancer looked like in her mind. Draw whatever came to mind. It was a twisting barb of a tornado shape to the bottom. When she was done we wrecked it. Getting rid of it like she is going to beat it. She asked me to use the stick and draw my heart disease. I drew a heart, and took black weeds and piled them randomly on and around it. We kicked it away, telling each to go away. It was therapeutic in a lot of ways. We are going to keep the stick of course.

We talked and talked. About the future and the seriousness of things. Her cancer and dealing with my palliative care issues. What we each wanted and didn’t want. We each agreed that when a person dies their spirit is united with the important people who left earlier, and that we’d be able to fly.

It was nice to spend our weekend in such a serene place, among many islands. It’s on the very eastern tip of the Upper Peninsula of Michigan. Today is Sunday and we are working on the rocking chair on and off. Football is on the TV buts it’s mostly background noise. I care little about whose playing and what scores are. I use to read world news constantly and couldn’t go an hour without reading something on the internet. Now, it’s like I really could care less what’s going on in the world. It’s strange that so much can take place in your life, change it, in just a few short days. Short days that have felt like a lifetime. Drawing in the sand together was the right thing at the right time. We were marriage 100 feet away, in her mothers yard. We talked and talked. For some reason she likes me reading to her so this is something new we’ve started. We plan on doing this while her chemo medicine drips into her heart. The book I started to read turned smutty on us, we laughed and said that we doubted I’d read it during treatment. We have a lot different reading material so it shouldn’t be a problem. Plan on reading some books Jen’s mother Carol sent us, and a novel. This is probably our last weekend of nice weather here. The trees are starting to turn colors. So many unknowns right now. Have thought about what to share in these writings and what not to share. Not naming a lot of the doctors and hospital staff to protect their identities. Bobbi and I want to keep the family updated, in addition to it possibly helping others who are going through similar situations down the road.

For we live by faith, not by sight.
2 Corinthians 5:7