A new year is upon us. A strong blistering winter storm dumped 17 inches of snow on the area, and really glad we didn’t need to drive in it. Had a nice and mellow holiday season. Not sure what this new year is going to be like but who does.
On our last visit to Petoskey, to meet with Bobbi’s oncologist, she talked to us about her last scan. The doctor read over the report and said there were a couple of spots on her lungs, which we knew there was from past scans, which would need monitoring. No big deal, just have to keep our eyes on them. Bobbi shared that regardless what the future held she was done with any future chemotherapy or surgeries. The doctor said she had wondered what she would do. When asked about the next follow up, 3 or 6 months, Bobbi said 6 months. Doctor agreed. She said it concerned her as a oncologist, but understood as a person. Bobbi was put through the wringer in 2018. We’ve talked hours upon hours about every possible scenario and what she wanted. If any bad news awaited us what could be done about it anyways? She’s gone through every possible treatment. 8 weeks of chemo with Gemzar and Abraxane, a full Whipple procedure, 6 weeks of daily radiation with chemo, to follow that up with 4 more additional months of chemo. At one time she could barely walk, was in severe pain with bile duct closing, and then the stent falling out. Not to mention all of her hair falling out. 2018 was enough! Now it’s about quality over quantity with the hopes that there will be both. All lab numbers are good so left the meeting feeling pretty optimistic.
Somethings didn’t sit right in my thoughts. I wasn’t sure what it was. We celebrated her ringing the bell after her last chemo treatment, but there was just something that didn’t quite feel right. Usually we are given a copy of scan results. Kept my thoughts to myself and counted our blessings.
Because we do keep copies of everything Bobbi decided to stop at the hospital here in the Soo and went to the records office for the scan paperwork. Reading it was somewhat disheartening. There were more than “a couple” of lung spots. There were five. One had grown larger since the last scan. The radiologist also wrote she suspected possibly that her pancreatic cancer was metastasized, meaning it had spread. Lungs and liver usually are impacted first.
Was a lot to take in. We’ve been told a number of times, with her having spots on her liver, that they believed her cancer had spread, to later learn that it hadn’t. The back and forth with the maybe it has and maybe it hasn’t was hell. How does one wrap their thinking around it? You may have years to live, or a much shorter time. Her oncologist didn’t mention any of this to us about the radiology suspecting Mets. Which we understand. It was the holidays, nothing was written in stone, so why get all worked up over something that could very well be nothing at all. Bobbi told her she wouldn’t pursue future treatments either way so that might have played a role too.
It certainly lead us to some serious discussions between us and family. At first we were a little dumbfounded and shocked that the word “Mets” was used, as well as learning one spot was growing. Do we keep the news to ourselves and just deal with it without concerning loved ones and friends? Why get everyone worked up for no reason if it turns out to be nothing?
I felt, at first, that we should have another scan in 3 months, instead of 6, so we’d have more solid information. If it was going to be a long period of thinking the worse, then it might be better to know ASAP. At least then we’d know exactly how to position things in our head. Bobbi agreed, though preferred to have it checked after 6 months.
I agreed. I always said that whatever her wishes are they would come first. So that’s where we stand on things at the moment. In May she’ll have another scan and we’ll go from there.
Depression started to sink in. Sleepless nights, every thought consumed with WTF?
Then it seemed like a real change took place. We really started to feel blessed with where things are. We had a super nice holiday. And our interaction feels a lot like when we first met 25 some years ago. Loving and laughing a lot and not spending time concentrating on the maybe this or maybe that. Bobbi never had time to bake or cook before, as a cardiac surgical nurse there were long hours and on call times. Now, she’s doing both and whipping out some wonderful meals! We sit at the kitchen table more, together, and really are enjoying each and every day.
Of course we’re concerned if it’s metastatic. But all the worry in the world isn’t going to change the outcome. Life comes at you full speed and is pretty raw and in your face at times. You wonder how your going to deal with it, worry, and it takes away the time you could be trying to enjoy whatever time life is lived. We are at that point. When I was going through all my heart procedures (close to 30 surgeries) it was like a bad dream. Then Bobbi was diagnosed with cancer. Here we were, not having a dime to our name, having our savings evaporated from bills, no home, and totally emotionally and physically beat down. I wasn’t going to suddenly get better and to top it off placed on medical palliative care.
Nobody knows what their tomorrow’s hold. Today, we have a beautiful apartment, everything we need in it, a good car, and are closer than we’ve ever been as a couple. Our kids and grandchildren are healthy (with a new grandchild on the way!) and we’re alive. We are not going to let our appreciation for the good become weighed down by the tough. Don’t get me wrong, we still have a boat load of tough situations. It took every dime to eventually have this beautiful woman ring the bell at her last chemotherapy treatment. We wouldn’t had made it that far without the love and support of our family and friends. The “you are loved” gathering came out of no where and truly helped save her life! Thousands of miles were traveled. Getting a Bobbi to that finish line with the chemo was a mission that there was no compromise on. Today we are thankful for seeing the sun rise in the morning and settle in the evening. We live on about $60 a week once insurances, bills, and medicine co-pays are done. Often wondering how we’re going to find quarters to do laundry. But somehow, today, we manage. Is it stressful? You bet you it is. But we try and put things in perspective. We deal with 24-hours at a time. That’s it. When either of us have a rough day physically we say we can get through today. That’s all we worry about. Period. Would it be nice to be able to plan a trip to see the kids, or see family in lower Michigan, yes. But you can’t squeeze water from a rock and reality is reality. We don’t mope around and have a pity party. We have life and it’s working today! We’ve been doing some drawing and watercolor artwork and really have been enjoying it. Bobbi mentioned to me the other day that she finally feels like she’s retired and it was a long time in coming! Hair is coming back nicely. She is by far one of the best things my life has ever experienced! I look back the last 25 years and just smile at all the things we’ve shared. Motorcycle adventures, children, trips, mostly just enjoying the other’s company.
Bobbi would probably share in this update but is soundly sleeping comfortably. Right now it’s 4:15am, have stayed up all night writing this and taking in the quietness. Have earplugs in so I don’t hear the pumping of the darn oxygen machine, cause that’ll drive you nuts more than anything else, and a cup of coffee.
Today, or I should say yesterday, was a good day! Binge watching seasons of Game of Thrones for the 4th time, and slowly recovering from the missed field goal the Bears screwed up last Sunday in the playoffs! What’s helped a lot is turning off the round the clock world news! Seeing the government on this “shutdown” is a head scratcher. The less fortunate lives are impacted the most, as always, but nothing we can do about it. Maybe someday the politicians will work for the people… ya right, seriously when has it ever been any different? The love of family and friends have continued to pour in! The area up here in Upper Michigan is really starting to feel like home for me. We miss Wisconsin terribly but I’m so glad that Bobbi is close to her mother and siblings. I’ve grown to love them like my own. Each of them are special in their own unique ways.
Well, enough with this book! Just wanted to update everyone and let them know we are still fighting the good fight and happy to be alive. I received a very special book from Cinneidi, our 16-year-old granddaughter, a few weeks ago. She had different pictures of us made into a book and it’s now one of my most prized possessions. Kids are doing great! Sean and Jen doing an amazing job with Cinneidi and Aiden, and working hard, reconnected with Adam and Julie to learn their soon going to have a son, Shay went scuba diving on the east coast of Australia, and we’re simply living life on life’s terms. Thank you for the read!
It’s been close to two months since I rang the bell after my last chemo. Three weeks ago I had another scan and things looked promising. They hesitate to tell a person they are cancer free, but I’m believing so. On the follow up appointment with the Doctor a week later we discussed how often people follow up with scans and appointments after chemo. Some 3 months, some six months. I chose the six month. I can’t live my life living and worrying scan to scan. If things turn south then it is what it is. All the worry in the world won’t change anything. It concerned the Doctor and Mike some but they each get it. Everything that can be done medically has been completed. Next week I’m having the port taken out. Feeling good and getting stronger each day. Taking daily walks with my mother and enjoying this a lot. Getting prepared for the holidays and glad I’m around for it! Wasn’t too sure about it a year ago. After going through an experience like this each holiday is appreciated more. We have our tree and lights up outside, they look really pretty.
“Faces and voices of cancer” organization want to do a interview on the 6th, in a couple days, and I’m glad to be able to help others fighting their battle with my story. I believe hope comes in many forms and if it’ll help another with that then mission accomplished.
Hoping everyone has a nice Christmas and great new year! We have lots of snow here in Upper Michigan, even built a small snowman on Saturday. Got a hat and scarf for it, just need a bit more snow, which I’m sure we’ll get. Not really sure what our Christmas Day plans are, but have awhile yet to plan. Just very grateful for life and being here for it!
Mike-Wishing the same to everyone in having a great holiday season! My gratefulness to everyone is hard to put into words. My admiration towards Bobbi is beyond words as well! Seeing her getting stronger each day is calming. Knowing the scan was good, and blood work, very assuring. What a wild ride it was. Seems so surreal now. I knew she’d be a monarch again, beautiful and shining. But it certainly took a serious toll on her. She fought Twisty and decimated it. Happy that she’s decided to have her port taken out. Doesn’t need a reminder what yesterday’s battles were. We’ll never forget them that’s for sure!
Thank you again to everyone! Have a Merry Christmas and a peaceful new year. Never give up your fight in life, no matter what the odds and so called “statistics” are! Everyone is unique and gifted in some way.
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!
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!
We drove down for the liver biopsy last night, checked into a hotel a block from the hospital, and went out for a nice supper. The surgeon told us last week there were a number of new spots on Bobbi’s liver and the biopsy would provide us whether or not there’d even be a surgery. Showed up on time, she was prepped, blood taken, and we waited for the procedure to be done. Thinking positive the whole time but preparing ourselves for grim news.
We weren’t expecting a Christmas miracle, if Twisty isn’t just hiding in some small cell we’d be lucky. There wasn’t a spot to be seen. Strange. She moved into different positions on the CT and still nothing. A different hospital than the first imaging was done. All week long Bobbi has lived with the thoughts that her cancer has spread. Trying to stay positive but even the surgeon, going on the films they had, thought it had spread. When they said there was nothing to biopsy we about ran out of the hospital. I wondered if the beast is watching in the shadow. Damn thing.
Don’t know how, why, or anything in why one place said there was and then another saying all was good. Elated for the good news but also a bit angry that she, and the whole family, had to spend the last eight days mentally preparing for the worst news possible. It was fighting Twisty and having it suddenly becoming a dozen of them. I don’t trust this monster. It makes a horror show mage in Hollywood boring. It’s the stranger in the dark.
We’re unsure what the next step will be. Calls have been made and we’re thinking the original planned Whipple surgery will be next. Get the tumor out of her pancreas and follow it up with 4 months of chemo. Knew it was too early to step out of the batters box. Knew we had to stay and think positive, which we did, but things certainly didn’t look good. Onward with this battle, there will be no rest until Twisty has been destroyed. It’s still inside her and it’s shown to be crafty and deceiving. It felt like Bobbi was walking the Green Mile, going to be strapped into the electric chair, and the phone ringing at the last 5 seconds before the switch was flicked given a full pardon. Each day dreading waking up because it was the first thing on both our minds.
The “You are Loved” party in Wisconsin took place and really brought a smile to Bobbi’s heart! Was so happy to see her having fun talking with so many. It was so good to see her laugh and smile, even in the midst of unsureness in severity. We FaceTimed with everyone and seeing people dancing and wishing her well, missing and loving her, can’t be described in words. Now with this good news she is riding a well deserved wave of happiness. Yes, a major surgery isn’t a great thing thing to look forward to, but knowing that she’s still in the fight is a blessing. Thank you to everyone who took part in this, as well as the support and prayers of others across the globe. It has become a global support. People we’ve never met in person, from Wales, England, Italy, Mexico, and new blogging friends here have been unbelievable. Never imagined that so many would take the time to lend their support, recommendations in getting second opinions, prayers, gifts, all of it! I look back on how we dealt with this last week, look at the goofy video made doing the coneheads skit on the last post, and I’m more convinced than ever that positive thoughts and energy make a huge difference in today and the reality each day brings. There will undoubtedly be more fastballs coming. Not today so will embrace it. She WILL beat this. There is fear but no compromises. It will and hasn’t effected our celebration of Christmas. It’s wanted to! The mental anguish has been the toughest it’s ever been this last week. One I wasn’t sure I’d personally be able to endure physically. But just when your at the edge and brink of despair there is always hope. A simple for letter word that now has so many meanings.
Thank you for the read. Very much appreciated. We couldn’t have the attitude we have without it. Never give up! Pick up the bat no matter how heavy it may seem or how bad the last pitch hurt smashing you in the head and swing away. We all have this ability. May not feel like it at times, but when push comes to shove we learn things about ourselves we never knew existed. Until the next writings please embrace today and try to find the good in it. Hard to do when physical pain wants to be boss. All of us are human and will have these times. Hard to put one foot in front of the other while our bodies and thoughts are saying no more.
There really is no description in believing, even being told, that the cancer has spread to there not being a single spot. The doctor said it might have been inflammation from her first bile stent becoming dislodged. Not going to lift our foot off Twisty’s neck, it’s going down! Going to continue to think positive, make goofy videos, and move forward. When dealing with cancer it’s rare to get good news. It certainly was a relief to learn this good news in the midst of this battle.
UPDATE 12/14/17 – Plans now, after several phone calls between Petoskey and Grand Rapids this morning, is to have 2 more months of chemotherapy and then another scan to see if spots reappear. They’re being cautious and before they do the Whipple procedure. Which makes sense yet knowing the tumor in her pancreas is still there is naturally worrisome. It is what it is and all the worry in the world won’t change anything. We’ll continue to take things day to day and keep swinging at the pitches. Waiting now to see when the chemotherapy will resume. It’s not a set back. Feels like one, because their not really “sure” and I expect things to be in black and white with no in between. All I can do is be supportive and remain strong for her.
The anticipated CT scan took place as planned. Bobbi stopped by the hospital a few days early to have labs done and picked up two bottles of contrast dye she drank before the test. The label on the bottles said they were like a vanilla flavored smoothie but Bobbi shook her head with disgust drinking them down. A long ways from a smoothie she said. They then placed an IV in her arm. Why they continue to stick needles in her, for blood work, IV’s, and such when she has a port confuses both of us. Use it!
Two days later we were back on the road to Petoskey to go over the scan with the doctor. First seeing the nurse, who took vitals and her weight. Then about 45 minutes alone waiting to see the doctor. Usually it’s only five minutes or less after meeting with the nurse. When he came in he explained that the scan hadn’t arrived but the preliminary report did.
He said that everything that could go right went right. The tumor shrank to 3 to 4 millimeters. We were elated. Wow! It went from 3-4 centimeters to millimeters! What we didn’t catch at the time was that he was talking about a tumor present in the liver. Not the one in her pancreas. When he mentioned liver I told him we knew nothing about a spot on Bobbi’s liver. This was the first time even hearing about this. Something didn’t make sense or add up. WTF? When asked about the tumor in the pancreas and it being butted against her portal vein he said the report only detailed the liver. We thought that it must be good news if it went down, the chemo was working, because it wasn’t even mentioned. He asked what plans the surgeon had and we explained that a Whipple was the next step. He said that he didn’t know what criteria the surgeon wanted but perhaps no surgery at all. The tumor had shrunk so much maybe more sessions of chemo? That would be great!
We left the meeting feeling elated, everything that could go right went right he 0said. This was good news right?Though in the back of my mind red flags went up. We text family and relayed the good news. We drove back excited that there was a chance no surgery would take place. Bobbi wanted to celebrate getting a cream puff. There was a bakery across the street from the hospital so we made a quick stop. No cream puffs, she settled for something else.
On the drive home things simply didn’t add up right in my mind. I didn’t want to say anything and wreck the good mood by questioning things. Everything that could go right went right we were told. This must mean what it implied.
After we got home we sat down and read a copy of the report. It gave a detailed summary on the tumor. Problem was that it was a new tumor we didn’t even know existed before today. When it got to the pancreas the report said that the known mass there had poor detail imaging. That was it. One sentence on Twisty. We googled all the medical jargon that the report was written in and learned the tumor he spoke of was in fact in the liver. There were also spots on her lungs but they did appear to be cancer related. Which is what we’re being told today.
Maybe it was scaring from the result of her bile duct problem? The tumor in her pancreas had blocked it, which lead to the jaundice and then her cancer diagnosis in August. A temporary plastic one was placed in the duct to relieve pressure. This fell out about five weeks later and was replaced with a metal one. So maybe it was a spot on the liver from this? Had to be. We would know more when the surgeon calls us from Grand Rapids after they receive the actual imaging. Knew it would take a couple days.
We lived by the phone, waiting to hear from her surgeon. When Friday arrived every thought was on the phone ringing. What a situation. To live your entire life, to suddenly be waiting for a 5-10 minute phone call that would change it forever. The hours passed with no news. At about 4:00 it rang. It was the surgeon. She explained to us that the imaging did arrive late in the day, but because it was a Friday her team wouldn’t be able to read everything, compare them to past scans until Monday. She said she wanted to call us and at least inform us that things did arrive, knowing we were very concerned. Monday? Seriously? I understood why, but it seemed like years until then.
So we waited, determined not to worry and spent the weekend watching TV, cleaning the apartment, talking and finding things to laugh about. Attitude is important and I know how to get her to laugh. We each said we were having bad hair days in the morning. Both being bald made this impossible of course. But it lighten the mood. Bobbi’s energy returned and she was busy as ever going about the day. On Sunday we drove over to see her brother Mike and spent most the time laughing and having a good time. Her family are really good people. We have our moments like any family, but who doesn’t. Situations are dealt with and moved on. One can’t help but leave in a good mood after spending time with him.
On Monday morning Bobbi went with her mother Betty to a doctors appointment for a hip problem that’s been causing her a lot of pain. Which again shows you the type of woman she is. We are waiting for a phone call, that will change her life, one direction or another, and she makes it a point to still take her mother to the doctor. It’s one of the reasons I love her so much. She has always puts others first, with no hesitation.
When she got home we sat on the couch and waited. The hours passed slow. Around 4:55 the phone rang. The called ID said it was from Grand Rapids. It was her surgeon. The call took the wind out of both of us.
The doctor said that her team looked over everything and she was highly concerned about “spots” on her liver (more than one). We asked if it could be related to the bile duct problems from the stenting and she replied that they considered this but some spots were definitely unrelated to that. There were spots that didn’t show up in her scan in August, which were present now. Her scan in October, when she had the metal stent put in showed them, but nobody informed us, assuming we most have been aware of it already. It was the hospital here in the Soo who did the scan in October and they had no idea what we knew and didn’t know. I think the hospital figured we were informed already. Surgeon said the the liver tumor started out about 14 millimeters. Chemo shrank it. Bobbi asked her point blank if it meant her cancer is metastatic, has spread, their was a moment of silence, and surgeon gently said she believed so.
Tests for a biopsy will be done on Tuesday in Petoskey with guided ultrasound. Problem is the chemo worked so well on this tumor that it may be hard to biopsy to know for sure. The fact that it shrunk is a sign in itself. Scars don’t shrink. She also said there were more than one, unrelated to stent problem. It was a very uncomfortable conversation. The surgeons voice sounded sad. We won’t know anything for sure until the biopsy. She recommended that chemo be continued, if it wasn’t making her too sick.
So that’s where we are. Hoping for the best, to hear that it’s nothing to be concerned about, but also know that it’s a game changer. She said there would be no sense to do the surgery if it has spread to her liver. Why put her through that ordeal she added. We are going to drive to Petoskey Monday night, get a room, and be at the hospital early at 8:00. It takes about 72 hours for the results. If they can get to it. If it has spread she will have to stay on chemo forever she said.
I told Bobbi I was done writing about this. She insisted that it must be written. I’m not comfortable doing so. She wants this to help others and it’s very important to her to do so. We don’t know anything for sure. Not going to jump to conclusions without the facts. Angry that we had to find out about the liver spots the way we did. Maybe nothing to be concerned about. The fact that the spots responded to the chemo isn’t good. The fact that the spots shrunk isn’t good. The fact that no one has mentioned anything about the pancreas tumor against her portal vein, is concerning. No mention of it. That was the beast we thought we were fighting. What I do know is that there is a whole lot of fight left in us. We knew that this wouldn’t be easy. It feels like we have to ask the right questions to get the answers.
Yesterday I went out and got us a small Xmas tree and it looks wonderful. We had put up decorations and some lights 2 weeks ago, but not a tree because we thought she’d be in the hospital for the surgery a couple weeks. Bobbi decorated it beautifully and we are still determined to enjoy the holiday. Very hard to do, but refuse to allow it to strip from us the good. We’ve cried, and I hold her at night close. It’s a very confusing time. I looked at her decorating the small tree and decided to take a shower. I wanted to hide my tears. I love her so much and it’s so painful to watch her experience all this. August 24th feels like a million years ago.
There is a gathering of friends being held in Wisconsin this coming Saturday, simply to show us we aren’t alone. It’s overwhelming seeing how many people are involved and doing so much. She is feeling so much love from others that she often sheds tears when a Facebook notice sounds on this iPad. We have it set to sound like popcorn, and at different times it’s like a large kettle is being cooked. Thank you family and friends. Life often shows the worse of humanity on TV and in newspapers. This shows the very best in humanity. The worst three words heard was “you have cancer”. The best three words she has heard is “you are loved”. Thank you are words that can’t describe what this feels like. She has touched so many lives, and will continue to. You have certainly helped her in ways that only love can do. When we decided it was time to let others know what was going on, until now, the love shown has been unbelievable.
The battlefield may have changed a bit. But there is no quit in her DNA. Not now, not tomorrow, not anytime. Tuesday more tests, results probably Friday or Monday. Have gotten about 5 hours a sleep these last few days. How do you tell your mind to shut down when there is no off switch. We move forward and deal with today. She is feeling good, no pain, but it’ like getting hit by a fast ball. Shock, disbelief, confused, concern, all combined into one.
Bobbi 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.
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.
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.
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?
Today the severe pain, which would come intermediately partially subsided. Though Twisty did show its urge and painful resistance last night really bad. Another endless night. Bobbi battled through it. The continuation of keeping pain Meds going on a 24 – hour basis worked for about 20 hours and then she was balled up with the severe wrenching again. Hot water bottles helped, changing positions, and gently messages got her though the ordeal. A fan lightly on and oils filling the air with defuser helps. The whole thing gets me so angry. They tell us to take her to the hospital if things take place again but we’ve been that route many times in the pass. Bright lights, a million questions while hurting, and waiting for different things. By that time the episodes become easier then your told you’ll be in the ER until a bed is available in a few hours. While laying on a bed with a hospital gown on freezing. Then the end result being told they can’t help much so a transfer to another hospital should take place. With me on palliative care pain medications are plenty, but you don’t want to use something that will make matters worse. It’s such a catch-22 situation. Billions and billions of dollars are spent in healthcare and yet people have to experience deliberating pain while the wheels work in approvals and decisions. Don’t get me wrong, we appreciate what can be done, and is, but I personally feel things could and should move much faster.
After the latest episode, which lasted a good half hour she got dressed into her nightwear and is relaxing comfortably on the recliner. Had we went to the hospital she’d be telling her story 10 different times to 10 different doctors all asking the same question as the previous one.
We talked for an hour and even joked some about the system. The tumor itself is acting up, and the cells next to it are dying and have nerves. We are picturing Twisty getting a shot of the Chemo and reacting with a temper tantrum. Her attitude is amazing. She simply deals with it, good humor, and tries to prepare for the next episode. Know it will come. When it decides to show its ugly side is on its own schedule.
Attitude and outlook is so important. She isn’t laying around whining with a poor me attitude. Not even a little. The effect on her, with hair loss, has been traumatic but reached the point where she really doesn’t give a damn about it. I told her the courage she has shown throughout this ordeal has made her more beautiful than any other time. I get why it bothers her. Women grow up seeing beauty on TV and billboards being brainwashed that beauty is having to look a certain way. Hair, weight, makeup, etc… Such a bunch of crap. It naturally freaks them out when they feel they aren’t living up to societies so called model image. She could give a damn now about any of it. She knows the people around her simply want her to get better and wants the same. But it is a process. There have been mood changes but we talk our way though them. Letting go of past bitterness in different ways, forgiving, and moving on with just getting better. She’s always treated everyone important and caring. The times it hasn’t been returned, or with “attitude” hurt her. A few times stand out when first moving up north. I’ve wanted to call these few people out… she simply asks me not to. People have to live with that guilt, if it even exists, so that’s on them. Life holds many unpleasant and confusing times. We all have this experience. From people we thought were friends, and even family. You forgive and move on. You do it for yourself. She once lived a little unsure about her ability to speak out, (though always strong and independent) afraid to hurt feelings or being a bother to others. That Bobbi is long gone. This experience has taught her how strong she really is, the people who actually care and give a damn, and she is going to come out of this stronger, wiser, and more sure of her abilities. I’m proud of her. I’ve always tried to help install a confidence in her, and remember teaching her to drive a huge big boy Harley when she expressed the desire. A few months later she was ripping down the highway with a friend to visit Nigeria Falls on our 840 pound beast.
Anyone thats meet or knows her instantly takes to her kind and caring ways. She had a good day today considering a few rough spots. Proud of her. Thank you again for the kind letters, cards, and calls. To both family and friends. If we can’t respond right away it’s because the days have often turned into nights and the nights into days. Thank you, it won’t be forgotten. You really learn who your friends are, by what they say and do when the chips are down, and feel very fortunate for the people in our lives. We are really missing the kids and grandchildren but hear all is well with them.
October 1, 2017
Bobbi went with her brother Mike to Traverse City this morning to see Lori. They will leave Wednesday early for her 3rd treatment, they will meet me at the cabin in DeTour Village after. With her having such a difficult day yesterday I’m hoping for the best on her visit.
She doesn’t let anything stop her from embracing life at full speed. It’s difficult watching the one you love struggle with a health battle, but certainly not as hard as it is for them going through it. Really dread Wednesday’s and the days after. Have never experienced anything like this. The home feels so empty without her. Well, it isn’t a home without her. Have the Lions game on but she’s all I’m thinking about. I am in such awe of her. Her spirit has lifted many throughout her life. She’s personally saved me in more ways that can be counted. When we met I stayed out too late, drove motorcycles too fast, and after we met was in bed by 10:00 each night! Always got up with her at 4:30 while she got ready to go to work. Missing your best friend sucks. I’ve dealt with Asperger challenges throughout my life and she has helped in countless ways with this.
Somedays we take so much in life for granted, thinking that we’ll have forever to live and enjoy. Scares like this sure put things in perspective fast. I know she WILL beat this, we don’t allow any other thought. I feel bad I won’t be with her on the next treatment but glad she’ll be with her sister. We use laughter and love to get through the rough days, but yet silent tears slowly roll out while looking out the window alone in the middle of the night. Sometimes I think I hoover over her like a helicopter but can’t seem to help it.
Her attitude is great. Friends not need worry about this. Each know her and the pictures shared show you how each know her. Free spirit, happy, and positive. Each have a story about her. I can not express enough how much this support has helped her. All she’s ever cared about, above monetary and material things, is her family and friends. While I dealt with my health battle she was the rock. Now I’m fortunate to be one of hers. It hasn’t been easy for either, lots of sleepless nights. But it’s taught us how lucky we are to have lived the life we chose to live. We have a long battle ahead. Yet don’t look at the length of it, but the quality of it. She’s always been a giver in life, never a taker. I’m so proud to have her as my wife. So very proud of her attitude taking on this battle. Have naturally always heard of the word cancer, and now it’s one I hate to hear. We talked many times about sharing this experience. So her family and friends can stay updated, and what’s been important to her is to possibly inspire others who themselves are fighting this terrible disease. Pancreatic cancer is a tough one, they all are. It’s a tough battle for people to go through. She had the choice to lay back and feel bad, or get up, get dressed, and swing away at it. It tells you her character. A lot of unanswered concerns. A big surgery not too far from now.
We can and we WILL get through this. Thank you for the calls, comments, facybook messages to all! She is a fighter, always has been. She will beat this!
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.
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,