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.
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.
Things were going good when we got home, had a light supper, watched a little TV. Glad to be away from the hospital. Then about 8:00 the same problems surface. Severe wrenching, pain, and could not get comfortable in bed. Hot one minute and cold the next. Did our routine of hot and ice packs, massages, pain and nausea meds. She eventually got up and laid down on the recliner. When she eventually fell asleep I slept a bit but kept getting up to check on her. Finally just brought out an air mattress and laid down next to her. She was having problems at around 5:30 so more meds and she managed to get back to sleep.
I slept a bit more and remember thinking as I came out of the fog what reality was like and hoping for the best. Maybe she ate solids too soon? I took my meds, felt weak, filled up on nitroglycerin and stayed on oxygen for awhile. I knew I had to clean up, shave, and at least pretend all was well. If I looked weak it would give the wrong impression. Finally started to get more energy, washed a couple loads of clothes (which I’m sure will send her into a panic when learning), and went shopping for softer foods. I know I have to also take care of myself if I want to be there for her. Jello, yogurt, juices, fruit, soups, etc… I also put a call into her cancer team docs to let them know what was taking place. Haven’t heard back yet but I’m sure soon.
When I returned from the store she was up, showered, and showed me another large amount of hair that had fallen out. Wasn’t upset about, just looked very drained and exhausted. Tomorrow Lori and her are going to remove the rest of her hair and just be done with it. The main thing right now is not giving Twisty the upper hand. She is doing a lot better now though. Off all meds and even watching The Young and the Restless. Wouldn’t want to miss that I teased. This gal doesn’t cease to amaze me.
She didn’t even get upset at me doing the laundry. I didn’t mess with the girly stuff so was safe. She appreciated it. Then looked outside our door and seen boxes by it from the mail. Haven’t had time to open them with her but soon will.
No one promised life would be unicorns and butterflies but hopefully soon she will start feeling better longer than a couple hours. This time if the pain starts we are going straight to the ER and have another scan done. Maybe there is a problem with the new stent. Won’t mess around and just think it’s a chemo side effect.
She went back to bed now, food staying down, resting peacefully. I turned on the TV, watching CNN and watching press briefing, while reading how Trump is dismantling healthcare with executive orders. We are on Medicaid and a blow to that would be truly devastating for us. Will leave politics out of this, but it’s a bunch of BS with our President “tweeting” such bizarre and mindless things. Enough said, will hold my tongue, or one finger typing back on this one.
Just got a call from her cancer team, they want her to return to the ER because of last night. Something more serious could be taking place and pain meds could be masking it. Will keep everyone updated.
Doc just came in and had good news. No movement of stent, no pancreatis infection, things look good. They are going to try her on some clear diet, if it goes well we will be home. If it doesn’t then tomorrow. No trip to Petoskey or anything. Yah! What was ruled out was the best news. Said the organ has taken a lot of trauma and reacts with swelling and that causes the dominoes to fall. Sorry Mackinaw Bridge, no scenic view tonight.
September 12, 2017
What a busy week. On Labor Day we packed the car and preceded to Grand Rapids, Mercy Hospital. Bobbi had her CAT done but hadn’t received any information on it yet. Her cancer team in Grand Rapids told us about the “Hope Lodge” a block away from the hospital. It cost nothing to stay there, sponsored by the American Cancer Society. I thought no way. We were a long ways from home and had no idea how we’d afford the journey. Like millions of other families we lived month to month on her social security. I was prepared to simply sleep in the car at night. Wasn’t a big deal. The big deal was what was taking place inside my wife’s body.
The hospital first wanted us there on a Tuesday for a imaging test called EUS for staging of the cancer. This would provide the information that haunted us. The test was completed and the next few days until Friday seemed like an eternity of time. The Hope Lodge was extremely comforting. Everyone there was fighting cancer and were battlers. It felt surreal walking into the doors. A kind lady named Stacy greeted us at the door and took us on a tour. There was a exercise room, reading room, billiards table, and a huge kitchen area for meals. The rooms were nice and very clean. What more could one wish for during this tense time? Guests were able to cook meals. Refrigerators were assigned to each family and one room had shelves stocked with different foods from the kindness of others. We can’t say enough good about this place. Everyone was kind and supportive. Meeting other cancer patients was good. Learning of their own personal battles helped a lot. We certainly all have our mountains to climb. She and her sister Chrissy, who lived about 45 minutes away went out together for the day on Thursday. The visit picked up her spirits and helped pass the time before the meeting. The wait was torture for us. Bobbi was experiencing nausea and stomach pain. The nights were long. Shay is going to school in Australia, which is a 12 hours time difference so it was nice messaging with her in the deep of it. During the day we did the same with Sean and Jen, in addition to Bobbi’s siblings. Each helped us a great deal. Everyone was concerned and supportive. What a situation our family was suddenly confronted with.
On Friday we met with her main doctor, a lady named Jill. She explained the results of the different tests and what our options were. The tumor was located on the top of her pancreas, which was more positive than in other areas. Because it was in this area, blocking her gallbladder duct, Bobbi’s body showed that there was something wrong. The change in skin color, the nausea, the blood sugar numbers bouncing all over the place, not to mention the weight loss. All symptoms that told her to get in and see our doctor. Some people dealing with this type of cancer get little advanced warning. Which in turn makes it more difficult to catch and treat. The CAT scan showed no spreading of the disease. The best course of action would be chemotherapy and then a surgery named ‘whipple’. The goal was to shrink the tumor and stop any cells from spreading, and when it was safe to surgically remove it. We’d began with 2 months of chemo, have another CAT scan, and see if it did in fact shrink the tumor. If so a month would be needed for all the chemo to leave her body and surgery. A major surgery. After this more chemo. A total of six months. Once each week, for three weeks in a row and then a week off. The chemo treatments will take place in Petoskey, Michigan. About an hour and 45 minutes away. On the way home we stopped at Lori’s and Jim’s house for a couple of days. Could think of no better place to shelter us from the storm. She’s close with everyone in her family. Mike and Steve, her younger brothers, and Lori and Chrissy her younger sisters. her father passed away some years back, of cancer, and that is still fresh in everyones minds and heart. Her mother, Betty, are close as well. Its been a very emotional three weeks for everyone.
First a port will be placed into her chest. This is a tube where the Chemo will be dripped into. We are waiting for the local hospital here in the Soo to call us on the date. On Friday we travel to Petoskey for our first consultation visit, in just a few days.
On Sunday we talked with Sean and Jen. They had told the grandkids. We were waiting until we learned more on the battle plan. It must have been a difficult meeting to have. We are a close family and just the word cancer is scary. We made a short video to show them a visual that things were well, and followed up their talk with a FaceTime call. You want to protect the people you love from worry and stress, but at the same time its important to have the children know that this battle will take place and that we are going to beat it. We have some good things in our favor. Catching it early and the location where it the tumor was discovered. We aren’t out of the woods in any fashion. Its going to be a long and tough road. Bobbi’s attitude throughout this has been amazing. There are moments of unsureness, but they’re talked through and discussed. We could sit back and just cry and let the sorrow drain us, or we can put on the armor and get ready for the fight. Jen sent us lots of oils and her mother Carol sent us lots of reading on holistic information. We’re very close with her parents. Every holiday was spent together while living in Wisconsin. Bobbi has chosen to only share the news with a few friends there as well. She doesn’t want people to worry or feel sorry for her. Which I get 100 percent. People will learn in time I’m sure. But right now its a family matter and all our energy is being spent in preparing for the chemo and surgery. Getting our ducks in a roll with insurance coverage and so forth. We’re on medicaid so lots of pre-authorizations and phone calls are being made.
We are choosing to believe that we can and WILL beat this. There is no room for doubt. I can’t began to imagine whats going on in her mind. This is the strongest woman Ive ever met, whose taking on a battle that is going to be beaten. We now have the facts, the battle plan, and now waiting on the first treatment. In the meantime its important to get as many calories into her system as possible. There have been some rough spots of sickness throughout the day and night. Its such a helpless feeling wanting to spare her the pains and be unable. I’ve dealt with over 25 hospitalizations the last 6 years with heart issues. A failed quadruple bypass surgery, and 19 stents put into my heart. Everything medically that can be done has finished. I’m on palliative care for comfort. My battle may help her in knowing that we can do anything we put our minds to. We each look at life differently than just a few weeks ago.
August 25, 2017
This morning seemed like I woke from a bad dream. Only it wasn’t. The hospital was only a few blocks away. I was still in a daze. When I got to her room she was sitting up, ordering breakfast. The stent was doing its job, her skin was less yellow and her eyes whiter. Both of us knew there was a battle ahead and concentrated on how we’d tackle this news. At least she felt better from having the pressure relieved inside the gallbladder. The doctor soon came into the room and cleared her for release. Her enzymes were still sky high but should soon get better. Her attitude amazes me. I shared that I had talked with the kids and that it wasn’t an easy experience. We talked about how important it was to stay in touch with them and are committed to it. When she was released the ride home back to Sault Ste. Marie took forever. An appointment was made with our family doctor on Drummond Island, and a CAT scan was ordered at the local War Memorial Hospital. An appointment was made in Grand Rapids to meet with the doctors who’d be involved with this battle. Grand Rapids is about a five hour drive from Sault Ste. Marie. It felt good to get home, though still feels like a bad dream. So much has taken place in just a few short days. Her Mother and siblings were all notified by Lori. Bobbi made a call to her Mother and shared the battle plan. The next step was the CAT scan and seeing Dr. Aldridge on Drummond Island. We’re so grateful to have him for our primary doctor.