Merry Christmas

The holiday season is often a challenging time for many. We all have our mountains to climb with challenges, and the calendar days knows little of these battles. As this season of holiday cheer nears I’ve asked myself what’s so joyful about my wife having pancreatic cancer and I have 19 stents in my heart, on palliative care?

Yet, this holiday season we are embracing it like no other in the past. We’ve already dug out our decorations, lights, and nutcrackers. There is something empowering about it. We were telling ourselves that nothing was going to interfere with this holiday season. Our personal battles we can look at in two ways. We can wallow in sorrow and self pity or we can stand tall and embrace the things and people in our lives that we are thankful for.

It’s not about the meals and gifts, it’s the people around us that matter most. We have so much to be thankful for! We have a roof over our head, food, medicine, and many amazing friends and family in our lives. So many are less fortunate. These are challenging times for many.

Whatever your battle is we all have this moment to live. Make it count. Don’t fall for all the commercialism of the holidays, celebrate being alive and share this time with the people you love and who love you. Let kindness warm your heart because a smile and hug goes a long ways. We shouldn’t need dates on a calendar to remind us to treat each other nicely. But it is a nice reminder to try and do so each day.

A new year is soon upon us. We are determined to make it a year of renewal and growth. Sometimes we see the most important things in life more clearly and in better focus when the chips are down and hope is more than a four letter word. May everyone embrace this holiday season, and celebrate your traditions in peace. Whether it’s celebrating baby Jesus to Hanukkah. Be kind to others, be kind to yourself. Dig out those decorations, hang the lights, and have a extra special holiday season!

Thanksgiving Time

Of course it’s 3:00am and I’m up sitting in the living room, the only light on is this iPads white glimmer being typed on one finger at a time. It’s been nine days since Bobbi’s last chemotherapy session (total of 6 now). The next 30 days she won’t receive anymore until the CAT scan is performed on the Monday after Thanksgiving. The doctors want to give it a few weeks for the chemo to flush out her system to get a good reading on the tumor in her pancreas. If it has shrunk surgery sometime in December. It’s butted against portal vein and surgery would’ve been too risky without the first 2 months, of six months, of it to be done (The portal vein or hepatic portal vein is a blood vessel that carries blood from the gastrointestinal tract, gallbladder, pancreas and spleen to the liver (https://en.m.wikipedia.org/wiki/Portal_vein). Hoping it has shrunk. If it has, then surgery soon. The time until then it’s difficult not to worry about the cancer spreading with no chemo being administered. A persistent dry cough has started for the last few weeks and this has caused concern as well. Lots of what “if” a person can drive themselves crazy with! As I’m writing this I can hear her coughing while she sleeps.

Decided to dig out our Christmas decorations and change the mood. Hung lights outside, etc. Doubt we’ll put up a tree since we may be gone for a few weeks around the day. The lights look nice and picked up her spirits. Her friend, who she grew up with, Nancy, stopped by for a visit too. Which was nice. Bobbi is still weak and fatigue comes quick. Went out with her mother for a bit yesterday but wasn’t gone long because it it. This Thanksgiving Day we’ll travel to Traverse City to see Lori and Jim. She’ll probably sleep some on the way.

The mind sure likes to wonder during the waiting for tests and such. Missing the kids and grandkids a lot! Cancer doesn’t take a break for the holidays unfortunately though. The Xmas lights and decorations is a way of telling the cancer that we’re not going to let it dictate to us what we do or don’t do. What’s been nice is seeing her not so whipped out having the sessions right after another. Hasn’t had to take naps lately, just no energy for very long when doing things. Still having tenderness in the area but I called her cancer team in Petoskey and they put her on a new medication for it. Works a lot better.

It seems like every minute of everyday is consumed with thinking about this, for both of us. How can it not be? Just want Twisty taken down, then finish the next four months of chemo and get on with our lives. Wishful thinking. Reality is different. Maybe they’ll want another month of chemo first? Just have to keep pushing on and deal with things as they come. A lot to be thankful this holiday season but the illness is certainly not one of them. I don’t even think about my cardiac stuff. Slap nitro on, a few under the tongue, and move on. It is what it is. With us having a new family doctor, here in the Soo, it’s been a inconvenience having to talk about the same information again and again, explaining I don’t care to see specialists, cardiologist, etc. I made the decision long ago to be done with all that and my mind hasn’t changed. If I didn’t need meds ordered I wouldn’t bother even seeing a doctor. Just know that everything been medically done when it comes to that and it is what it is. I don’t talk about it, just manage it. Don’t have the time to worry or think much about it. Not being stupid about any of it. Some would say getting only a couple hours of sleep some nights is but how do you turn the brain off when so much is at stake? What matters most to me is my wife and her getting better. Period.

The wind is blowing and a storm is starting to brew outside. It’s winter here in Upper Michigan and they’re not the friendliest. Only a few blocks east of Lake Superior so the weather changes fast. Deer hunting season has started so a lot of people wearing orange. Life here is so much more different than in Wisconsin. A town of about 17,000 people and one main road. Still can hear the freighters fog horns blast their deep bellows. People are honked down and getting ready for the blasts that the season will surely bring.

All and all things are good. The calm before the storm. If surgery is performed in a few weeks it’s going to be a major one. A Whipple procedure is big (pancreaticoduodenectomy) In the procedure, the first part, or the “head” of the pancreas and about 20 percent of the “body,” or the second part, are removed. The bottom half of the bile duct and the first part of the intestine are also removed. In a modified version of this surgery, a part of the stomach is removed). So it really is the calm before the storm. What I’m concentrating on right now is Bobbi and taking care of the things that need to be done. I don’t want her to be concerned about anything except getting better and finding joy in each day. Family, friends, have all been helpful and something we’re very grateful for. We wanted to make it down to Wisconsin for the planned party but a seven hour drive, and chemo whipping out her immune system the doctors say is a risk to close to surgery. There will be one heck of a cookout when we do return to Wausau though! Thanks everyone for their prayers and support. It has made a huge difference. And thank you Cinniedi for your daily songs and bible verses sent to your Grandma. Hoping everyone has a great turkey day! Also thank you for the kind words of support and sharing from writers following this blog, new friends that have also helped in this journey.

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.

The Dark

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The most difficult part of the day are the dark hours of the night. With daylight saving falling back an hour it’s getting darker earlier. Something doesn’t feel right. It’s like in the Netflix series ‘Stranger Things’ when reality flash’s scenes of a dark and twisted landscape. Fear is the emotion that wants to become the dominant one. We often fear what we can’t see, with the CAT scan coming up it’s like this. You have to though. You hope for positive news. But at the same time, when lightning flashes for just a second, you can see things you don’t want to see. When photographing storms things looked so different when a flash of light lit up the sky. A blue hue, ugly clouds, wind thrashing and beating the landscape.

It feels like the wind is starting up again with the darkness. Getting up earlier. This morning it was 3:15. You want to stay positive but it’s hard to turn a mood around. Yesterday was rough. She dealt with nausea and pain in the evening. She said yesterday that it felt like she was rotting away. Broke my heart to hear. I quickly said no, we are going to beat this. She seems more distant and into deeper thoughts. I know it’s important to take the time to touch. I think cancer try’s to make a person feel they are unattractive and others don’t want to touch them. I’m going to make a point to change this. Nobody should ever feel that they are unworthy of being loved or held. The emotional battles are as tough as the physical ones. At least medications can help the physical ones. Theres no pills for the emotional ones except touch and love.

I can’t image what she is thinking about. I can relate with wondering if my own eyes would open when hooked up to IV’s and wires attached to my chest. But this is different. You never really come to peace with the thought. You just know that you’re thinking is messed up. Think positive, think positive, think positive… yet the lightning keeps striking. Pain, replaces the thunder. As a kid I use to count the seconds when thunder would come after lightning. Now I clinch my teeth. When she is getting sick their clinched with frustration and anger at things I cannot see. Today her blood work for Thursday will be taken.

I don’t like seeing the changes that Bobbi is going through. The physical changes rip at my heart. I see her silently struggling to grasp all of it. Joy is something we need to find, somehow, someway. Hope isn’t just a nice sounding word or belief tossed around, it comes from desperation and fear gives birth to it. There is a price to really feel that word, and doesn’t come cheaply. Oh, we can hope for warm days, or children hope for certain Christmas gifts, but this is another type of hope.

Fear of the unknown never bothered me before. Those days are long gone. Maybe it’s the darkest time inside the cocoon right now. Spring will arrive and like the new life that sprouts out the soil this will be a battle defeated. Hope… not something to be gambled on.

Hope and Rage

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It’s early Monday morning, about 1:00am, unable to sleep. Too many thoughts bouncing around the brain, and moving clocks back an hour always messes with me. No blood work for Bobbi today because her 6th chemo treatment, which is usually on a Wednesday, will be on Thursday instead. It won’t be in Petoskey either, but in Gaylord. About the same amount of drive time. After this CAT scan early next week to see if there are any changes to the tumor. This test, and waiting for results, are stressful for us. What will they show? Is the chemo working? Has the cancer spread? Is the tumor ((TLF) shrinking

Spent the weekend at home. There is tenderness where her pancreas is, and the chemo really takes her energy away. She has always been active before this. I try to stay up on the house chores, which is no big deal, but I think she feels bad about it. I assure her it’s no big deal. I try to keep her spirits up, cook meals that are healthy, sit with her, etc. She has a lot on her plate and needs to take things 5 minutes at a time. She had made plans to go to a craft show with her mother but decided not to. Not because of her white blood cell count, which has leveled out, but no energy. Later in the day we went to get some soup at the grocery store and she returned to the car after walking around a bit. She is having a hard time with this. The desire and want to do more and her body telling her no. It’s takes about five days to rebound physically after each treatment. Her blood sugar numbers are still jumping all over the place, and not seeming to get any better with an increase of insulin. With the tumor being where it is, in the pancreas, which is where insulin is produced, we’re pretty sure it’s all connected. It’s like different battle fronts spread out all over the place.

Keeping positive is difficult. But it’s an important ingredient. I remind her that next year, when the weather turns nice again, she’ll be doing the things she’s always enjoyed again. It’s so easy to feel negative. What’s positive about having cancer and my dealing with advanced heart disease? How do you deal with it emotionally? Doesn’t exactly put you in the mood to do cartwheels and handstands. For us it’s the desire to get back to the simple again. After working so many years and retiring it’s just been one battle after another. We’re strong people, and take things on full bore, but damn! You just never know when things will change so quickly. We’ve always looked at life as waves. When your riding a good one take it in and know it’s existing at the time, because life certainly has its share of bad weather, for everyone. So if you can see a good experience taking place, the moment it is, your enjoying it more than just taking it for granted. Taking things for granted is easy to do. For us we’ve always tried to be aware of the moments of good and calm. Which we are grateful for.

Another mass shooting took place in a small town in Texas, just a couple weeks ago it was in Las Vegas. What’s the matter with the world? So much hate in it. We try not to have the news on. If one persons views don’t agree with another’s their demonized. Has it always been this way and social media simply amplifies it? I remember when there were 3 TV stations on, and at midnight they played the national anthem and it was static the rest of the night. The remote control was your dad telling you to get up and turn the channel, and not too fast or you end up needing pliers to do so later. How times have changed. I just questioned why people can’t just along. Agree to disagree and move on.

It’s hard to make sense out of so many things. We’re learning to shut it all down and off. Concentrate on the things we can touch and feel. Right now what I care about most is Bobbi beating Twisty into a bad memory. Blocking out so many negative and distracting things is a chore on its own. Doing so creates somewhat of a better quality of life. Things just seem nuts when you turn on the TV or walk out the door. If you take too long at a stop sign someone is flipping you off jumping on their horn in a rage. What’s all that about? What’s the hurry? To get where your wanting to get 15 seconds earlier? People are battling for their lives. People are starving. I just don’t get it.

The next ten days will be long ones, a round of chemo, scans, and Petoskey next week to learn where things are at. Talking with the surgeon in Grand Rapids. Won’t have much time for writing but we’ll do our best at keeping family and friends updated. Without either this experience would be a very lonely one. Your calls, cards, messages, everything has made a huge impact on this battle. I wish there was a way to say thank you in a way that shows more than the eight letters that spell it.

Butterflies and Sister Morphine

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This week leading up to Bobbi’s 5th chemotherapy treatment seemed like a roller coaster at times. The first two days, after the last one, went well. Didn’t get sick, had more than usual energy. The next couple of days some side effects kicked in. Lots of fatigue, but no pain or getting sick. The middle of the week was emotional though. On Sunday I could tell she was dealing with a lot internally. She shared that she was having a difficult time in the mornings. When she gets up and showers she continues seeing hair going down the drain and it’s tough, then when she is getting dressed and sees in the mirror her port protruding from the left side of her chest, a few inches from her heart, and the weight loss, it’s a lot to take in. Lori cut it shorter a few weeks back but she wasn’t ready to see it all go then. She knows that the fight is with the tumor but it’s still a difficult experience.

We had a good talk. Decided that when she felt that way to look back in the mirror and say “Screw you cancer! Your not going to affect me today!” Saying this has helped. She uses a little more colorful words, but I’m sure readers get the point. She isn’t going to let it affect her self esteem or continue to allow it control over her emotions. I get where she’s coming from I look at the long scar starting below my neck, going about a foot down. I see it everyday and know it’s ugly. It hasn’t stopped her from loving me. As far as her appearance goes she knows I careless about it. I shared with her an analogy of a cocoon. It’s not the most impressive looking thing at the time. But look at the beautiful monarch butterfly that breaks out of it later! She has cancer. It attempts to take everything from a person. Physically and emotionally. The medicines used to fight it are strong, maybe even stronger because they are taking on a strong and deadly foe. The battle she is fighting isn’t a walk in the park. But the butterfly that emerges will be beautiful. It made a lot of sense to her and helped. We talked more and the last couple of days have been better in regards to these things. I’m glad that we’ve always have been able to talk and share everything.

Fatigue and body aches start about 48 hours after treatments. She’s never taken naps or rested during the day. Yet she knows there is a big surgery in probably six weeks and needs to rest and heal between treatments, prepare her body for it. She recognizes what her body is telling her. She’s putting on needed weight, getting more sound sleep, having morning coffee (though has lost the taste for it) with her mother, the two going to yoga. The days are better than a few short weeks ago. We had a really nice FacyTime call with Sean and Jen, and the grandchildren in Wisconsin. Also a two hour call with Shay in Australia earlier in the week.

The countdown until Wednesday morning, treatment days, kick in around Sunday. Neither look forward to it but at the same time know it’s a day that will be one more step in bringing twisty down.

When the alarm rang at 4:45 I turned off the pumping oxygen machine and thought of the day ahead. Each of us were quiet, preparing for the trip. We seemed to be on autopilot. I could tell right away that I had to take my heart medication early. My chest and elbow ached badly. I questioned how the day would go. Decided to put on two slow release nitroglycerin patches, one on each arm, and a sublingual tablet under my tongue. Before we left I put the orange plastic prescription container of morphine into a small backpack, hoping not to need it but being prepared nonetheless. Also put a portable oxygen cylinder into the back of the car (didn’t need either though thankfully).

Bobbi woke up an hour before me and we sat in the dark living room, She drank tea, I had my usual one cup of coffee and went outside to warm the car up. There was about an inch of wet frozen snow on everything. The drive down to Petoskey looked like the corn maze in the movie “The Shinning”. It was very dark and spooky. All I saw, going below the 75mph speed limit because of black ice, was the solid white lines of the highway and yellow reflectors appearing on turns. Visibility was about 50-feet as the windshield wipers tried to keep up with the snow. Here in the Upper Peninsula of Michigan you never know what the weather will be like in November. When we got to the brightly lite Mackinaw Bridge snow continued to fall (the longest suspension bridge in the Western Hemisphere). We still managed to arrive at the appointment a few minutes early.

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Bobbi took a deep breath and we walked hand in hand into the building. The nurse, Becki, greeted us, taking her weight and complimented her on the weight gain and was concerned on how her week went. The lab numbers taken at the War Memorial Hospital on Monday we’re excellent! Her white blood cell count was in the 10,000 range, much better than the 30,000+ a few weeks earlier, when the session had to be canceled. All other lab results looked great! Becki commented on how pretty she looked. And she did look good. She looked confident and ready to take on Twisty. When the meeting was over we went to the infusion center and in no time at all her IV was connected to her port and the treatment began. the staff here are amazing. They treat you like one of their own family members. When many doors closed because of Medicad their door opened. Everyone recognizes us and greets us friendly. All of them commented on how nice she looked. About 15 minutes later her sister Lori arrived and greeted us with a big smile. When first moving to Michigan it was difficult, she was made to feel unwelcome by some (water under the bridge now). But Lori and Jim welcomed her with arms wide open and will be something never forgotten. Bobbi was in the beginning of her illness and it was a very confusing time.

The session seemed to go quickly. Three different drugs are used. Between each her IV is flushed clean for the next. When family is around I tend to give them privacy because it’s important. I have a hard time sitting still for hours at a time so I took a few short walks and thought about everything taking place.

Today’s treatment went well. After we had a nice lunch at Big Boys. With her white blood cells looking good, and not many in the restaurant it was alright. We wanted to do same when her sister Chrissy visited, but the session was cancelled and restaurants were out of the question. I shut it down because of her extremely high white blood cell numbers. Not something Bobbi was happy about at the time but my main priority (and always will be) is my wife and she was in rough shape at the time. It was good to see the two of them laughing and enjoying the time together. The trip back home also went quickly. It’s now about 8:30pm. We watched a little TV, had a small meal, but the treatment makes her legs feel restless, with the need to keep shifting them. Massaged them good, put warm compression on them and it seemed to help. She had a hard time keeping her eyes open and called it a day and went to bed. I’m watching the seventh game of the World Series and will soon be joining her. Wanted to write down my thoughts while there’re still fresh in my mind. It’s been a long day. Will send this update onto the blog tomorrow after she reads it.

Progress is being made. Both physically and emotionally. No nausea, no pain. Might be a restless night with side effects but much better than at the start of this battle. I embrace the good days but we’re not going to let our guard down for a second. Thank you again for the kindness shown by many! She WILL beat this.