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 new 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.

Angels and Outlaws

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

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

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

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

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

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

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

Her acceptance in me, when I didn’t even believe in myself. Her family and friends doing the same. It opened my eyes to a different world. I knew though that I had to find the road to redemption in some way. Since there was no easy entrance ramp one had to be made. I decided, with Bobbi and even our granddaughters assistance, to attempt to help one person, or nonprofit organization, a kind act each week for a year. Never using our names during the times while writing about it. I knew I could do little about the passed, more less control the future, but I could try (This project can be read about on this link). We called it “The Sequoia Project”.

This experience opened my eyes even further to the world around us. It lasted longer than the planned year. I had seen the worst of humanity and instead of adding to it her love changed me into wanting to help better it. It’s very difficult to explain. It follows me to this day.

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

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

Doing Better

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

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

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

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

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

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

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

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

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

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

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

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

Thank You

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It’s the middle of the night again and wide awake, yet my minds in a trance like thought pattern. Bobbi sleeping soundly, having had a couple better days unlike the past weeks before them. Our day started out with each feeling like we got good sleep, though mine was split up in segments. Feels like sleeping with one eye open. Afraid to go to sleep completely. The only sound in the house is my oxygen machine letting out a pumping sound every three seconds. I sit here in the dark, using the keypad on our iPad, using one finger at a time, trying to wrap my mind around everything. Just a little under two months ago she received the diagnosis of having pancreatic cancer. I can’t imagine what’s going on in her mind. Most the time, I’ve no clue what’s going on in my own. I just know that no weakness can be shown. In my early years growing up in big cities weakness was a something pushed aside and never shown. No matter what the feeling were inside. You simply didn’t display it. Doing so would open the door to predators and this cancer I feel is like that. Give it just a centimeter, a small tiny entrance, and it would use the opportunity to become stronger. The strong swallow the weak and that’s how this world, and life has always operated. It’s hard to let go and let faith be and do what it supposed to do. I know this worry and concern will do no good, because it drains you of the strength needed for the battles. Knowing this, and convincing the brain of the same is two different things. I don’t want to let my guard down even for a second. Yet what’s taking place inside her body cares less about what I think and do. I have no control over the higher powers to be. I have control in helping with discomfort and her knowing she is loved, but none when it comes the battle between the body and medications of another. All I can do, and try to do, is be positive and caring. Yet it’s on my mind every minute of everyday.

Today she got up, checked her blood sugar numbers and they continue to jump all over the place. She’s eating right, taking her insulin, and it seems to matter little. She felt like she had to stay busy. Doing household chores like nothing was wrong, wanting no help. I got that. When I was the sickest I wanted no help either. I wanted to physically tell myself that I wasn’t ill and was going to do what I had to do. Wither it was shoveling snow or chopping wood. Push through the pain and the body would follow. All a bunch of BS. After she started laundry I knew, without even seeing her, that it was time for a break. I was right. When I walked in to help she was exhausted and wore out. Suggested that she took a break and I’d finish things up. She agreed and laid down awhile letting me do so. I knew what she was doing, because I did the same. Pretend all was well and push on. Too bad the body doesn’t work that way in reality. Pushing on only puts more strain on a body that needs rest. Causing the opposite effect in what’s needed.

Survivors guilt is also real. Why am I still alive after all my cardiac challenges, after 27 hospitalizations, quadruple bypass, 25 trips cath lab visits, 19 stents, radiation, EECP, 10-months of physical rehabilitation, etc… and now she is the one fighting for her life? It should be me and I’d take all of it if I could. I tell myself that it was so I could now be around for her. There was a purpose to my survival. Things make better sense now. I have to hang on now for her. I certainly hope that is in the cards. I can’t image her taking on this battle without her best friend and husband. We’ve been so fortunate to have developed the relationship we have. It hasn’t always been easy, what long term relationship is? But it’s certainly been worth it. We remember simpler times and tell each other we’re glad we had our eyes open while experiencing them. Watching our children grow up, the joy that grandkids bring, our friends and family. As you get older this is part of it. Taking care of the other when one is in need. We each see things from the others perspective now too. The feelings of helplessness, the prayers of their getting better, learning from the other what they are really made of in the worst of times. Maybe I had to go through my issues to show her that a person can get through and beat unbelievable odds. That you don’t give up and quit when every body part hurts and the the mind is telling you no more. When every step taken your wondering if the other foot will follow. But you do it. You question why when the world seems to hold little joy, but then are reminded that many do exist. You always have more living to do. More things to experience, more love to feel from the lives that matter. It’s these things that keep you going.

Later in the afternoon we had such a time. It came with a simple walk outside during a beautiful day. Just walking, holding hands, and talking. Feeling the breeze, hearing from loved ones, enjoying a nice supper. It was a good day. I didn’t want these writing to just detail the terrible and troubling days, but to include the good and positive ones. The times during the day where things are okay and no matter what’s going on your glad to be alive. Today was one of those days. We try to have as many of them as we can. We try to look at the glass as half full in all situations. It’s not easy, you have to vent when it’s needed, you have to let the tears out when they come. You can’t look at every 24 hours in a negative way. If you do your blind to the things that really matter most. The things that make life worth living. We laugh and joke around a lot. Some days not so much but you get through them. Bobbi is a very unique person. She has a way of making anyone smile and feel better about themselves and life in general. She is by far the kindest person I’ve ever met. No comparison. The fastballs and curves may come in on us, at unexpected times and speeds, but you just have to get through them. The painful times are the worst. You want so badly to take it away. All one can do is comfort and sometimes that’s impossible. All you can do then is hold them and assure them they are and never will be alone. You hope the medications of modern medicine relieve the physical discomfort.

I have no idea what’s going to be written about, unless it’s an update of events taking place. Been told this and that about support groups and all that. I can’t imagine them helping any stronger than being there talking and sharing with each other. I know it’s frustrating when people aren’t hearing from her directly on the phone or through messaging. It’s not because she doesn’t want to. Often I don’t “want” to either. But she has been a friend to many and people care and need to know how she’s doing. Often I’ll copy and paste when things are moving fast and many need to be kept in touch with. Times like this I can share more in a more personal way. She has touched so many lives with her laugher and love. We are certainly fortunate to have so many caring people in our lives. Cancer, like all diseases, are hard and painful. We all probably know someone, family members or friends, or even ourselves who take on the battles. Reach out to these people. Let them know they’ve made a difference in your life. Forget the small and petty things. No one should go through hardships alone. Life is so difficult to explain and figure out. Just when you think you have something comes along and throws the cards completely in the air. Thank you again for the love and support everyone is showing her, its mattered a great deal. She WILL beat this. I don’t care what the odds of certain things are. Odds have two sets of numbers. I wish there was a way to give thanks to the many people who have included her in their prayers and thoughts. Some we’ve never met but have been told they are from sea to sea. Life has its evil and dark sides, but it also shows humanity at its best. I know I look at it much differently. We get notes and cards from caring people we’ve never met, telling us she’s on their prayer trains. What more can be said but a humbled thank you.

This weekend we are taking things slow, preparing the mind and body for another round of chemo and a major surgery in December. There is a calm in the battle. Prayers are being heard and answered. We’ve also learned a fundraiser is being planned in Wisconsin. Thank you.

Winter is Coming

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

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

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

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

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

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

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

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

Faith

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

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

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

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

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

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

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

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