An Unlikely Couple

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

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

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

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

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

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

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

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

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

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

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

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

Doing Better

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

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

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

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

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

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

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

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

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

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

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

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

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 grateful 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.

Another Scare

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October 12,2017
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.

Home Sweet Home

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October 11, 2017
She was cleared to leave around 1:00 and we are now back home in a Sault Ste. Marie. She’s feeling so much better. Going to keep this short but just wanted others to know that she’s doing good. Was frustrating waiting for the paperwork to be done. Told it would be soon around 9:00am but wasn’t until 4 hours later. She was ready when I came up in the morning.

Proud of her for facing this and dealing with the chemo side effects at the same time. Of course she had her monitors beeping things were wrong every 10 minutes. That has to be as frustrating for the floor nurses as it is for the patients. Never was figured out why it kept alerting that loud beep, but it is what it is and at least she is resting comfortably at home, eating regular food and not drinking the meals. The new stent is larger and shouldn’t cause any more problems. That was quite the scare and ordeal. Looks like we’ll have a real treat tonight called sleep! Thank you for the concerns and support from everyone. Even touched base with friends we knew a few years back that we reconnected with (Julie and Christina). So glad that there is no new tumors and the one being dealt with appears to be going down.

A Time to Heal

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October 10, 2017
Just left the hospital here in Petoskey to go back to the motel. Bobbi underwent another procedure of having a new stent placed into her bile duct today. The last one, inserted in August became dislodged about a week and a half ago. It was plastic and small, this one is metal and will work a lot better. It should be removed during her upcoming Whipple surgery hopefully in December.

It was a painful and difficult week and a half as previous shared. We didn’t know if the pain was from the chemo treatments or another issue. It was this issue. Hard to imagine a device traveling through her system for such a long time. Very lucky we got her in and had things looked at.

What we learned from the procedure was also good news. There is no additional tumors and the one there is appears to be effected by the treatments. The Doctor explained that he wasn’t sure if the tumor had shrunk but did feel it had soften and wasn’t as hard as it had been when he placed the plastic one in. They had to use plastic then because of imaging. This was excellent news! My warrior didn’t want to go in, who would, but did and faced the fast pitch fastball that suddenly became an issue. It was difficult, naturally concerning many, but the problem is now fixed. The battle goes forward. Updating family and friends was time consuming but understood. I know people worry and don’t want that, so no problem. It’s not like I’m blogging while all this is taken place. Simply trying to find the time to assure people that she is safe and taking things on as fast as the problems surface.

Tonight, after she went to sleep I returned to this quiet and lonely motel and decided to update this. My own meds had to be taken and had to eat. We really appreciate the love and support from so many. Thank you.

CC, our grandchild, took the time to send an extremely pretty song with her playing the guitar. It was really pretty. The first time we heard it the music brought tears to our eyes. The expression on her face as she played it was beautiful. I played it for her while her eyes grew heavy and sleep came within seconds. The smallest acts of kindness and love go so much further than one can imagine. Thank you CC. It’s a precious gift.

Was one long day. At the end of it the sky gifted us with a wonderful sunset. Hoping this procedure will make her chemo battles more manageable. I kissed her cheek as she slept telling her she’s my hero. Thank you again for the prayers and support. Too many to list but you know who you are. The ones who didn’t get a chance we know your sending love.

AF76B5D5-D9DA-4AF1-AEBA-4B565AE98A52This is an amazing woman who could have given up and said to heck with it all. If one listen to the internets outlook and statistics many would not have the courage to battle. Every statistic has a positive side, may be slim but it’s there for a reason. We choose to believe we are on the side of positive. Time to end this and get up in the morning and take my wife home. Again thank you.

The Dark Of Night

October 9, 2017
Yesterday was another rough day. It’s Monday, about 3 :00am in the morning and I’ve staying up all night to watch over things. On Sunday morning she got up early, dressed, and was tired walking across the room. Her scalp hurt, skin, mouth. Hair continues to comb out in clumps. Her mood was very down and emotional. I went to the store and got a few scarves and flowers. It picked her mood up some but the day continued to be tough. We sat outside for about 30 minutes and even the sun caused pain on her skin. All the areas where new cells are constantly being made are effected by chemo. The medicine kills cancer cells but also kills good cells that reproduce naturally each day. The pain in her pancreas is not the chemo but the tumor. So the battle was taking place at different spots and different times. Her brother Steve and his wife Debbie were in town, texted to see if she was up for a visit but shared she was whipped out for company. They understood. We watched the Lions play but really didn’t follow it much. She tried to stay awake so she’d be able to sleep tonight.

I had a feeling that her night wouldn’t go well so laid down for an hour about 2:00. Sure enough, it didn’t go well. She went to bed about 9:00 but was up at around 9:30 balled up in severe pain. It was like a 15 on a scale of 1 to 10. No matter what she did it wouldn’t let up. I kept switching hot water bottles for cold. One minute she’d be burning up and the next minute chilled. Her temperature was bouncing all over the place. Tried help with massages, laying with her, providing fresh towels, but Twisty has a mind of its own. After about an hour she fell asleep exhausted. It’s presently about 3:15 in the morning and I just checked on her to see if she had a fever. She was sleeping soundly but temps still high.465EFA25-8C63-4F9B-BB43-FA3CFA22CA2F

What an ordeal. She has a week off from treatments but we may be going to Petoskey anyways to see the doctors. It’s close to a couple hour ride. The pain is just too much. Will be calling again when their office opens to find out. We knew this battle would be difficult, but had no clue what to expect. We are hoping that after the whipple surgery the painful episodes will subside, though pretty sure the 4 months of chemo will still leave her with fatigue and such. At least the tumor will be out, no longer pushing on the surrounding nerves and organs. We’ll learn more about this within the next 5 weeks. Hopefully the chemo is shrinking the tumor so they can safely get to it. It’s pushed against her portal veins so is too risky to attempt right now.

Have no clue what to expect today. The longer she stays asleep the better. At least she is not experiencing these problems then. I know she’ll will beat this but it’s hell watching her go through it.

So many thoughts and concerns going on at one time. There will be better days but at the time it’s like one boxing round after another. Each one leaving a toll. Her weight is slipping because she has no desire to eat, though is because she knows how important it is to be healthy enough to endure the major surgery. A whipple surgery is very complicated, which will be explained later. It’ll take place in Grand Rapids. For today we’ll just take it moment by moment until the darkness of the evening comes.

At about 11:00 her Doctor in Petoskey said to get her in the ER here in the Soo. We checked in, now she has her pain under control and a CAT scan is next. Will know more soon. She wasn’t too thrilled to come here but enough was enough. Could not sit back and watch her suffer. Bobbi’s the type to bite the bullet but in a situation like this it isn’t something to be messed with.

Doctor just came in and explained that the CAT scan shows that the stent they put in her bile duct became dislodged and she’ll be transported to Petoskey by ambulance to have it fixed today. Knew that something was going on. At least it’s not a new mass or tumor! We can handle this one. It’s what it isn’t that provides the relief. Serious but she’ll probably be back home tomorrow. Time to pack the bags and meet the ambulance down there. Thank you for the concern. Onward with the battle.

Keep Pushing On

BCD1D353-725E-4686-88E1-7CDC7A7A494FToday the severe pain, which would come intermediately partially subsided. Though Twisty did show its urge and painful resistance last night really bad. Another endless night. Bobbi battled through it. The continuation of keeping pain Meds going on a 24 – hour basis worked for about 20 hours and then she was balled up with the severe wrenching again. Hot water bottles helped, changing positions, and gently messages got her though the ordeal. A fan lightly on and oils filling the air with defuser helps. The whole thing gets me so angry. They tell us to take her to the hospital if things take place again but we’ve been that route many times in the pass. Bright lights, a million questions while hurting, and waiting for different things. By that time the episodes become easier then your told you’ll be in the ER until a bed is available in a few hours. While laying on a bed with a hospital gown on freezing. Then the end result being told they can’t help much so a transfer to another hospital should take place. With me on palliative care pain medications are plenty, but you don’t want to use something that will make matters worse. It’s such a catch-22 situation. Billions and billions of dollars are spent in healthcare and yet people have to experience deliberating pain while the wheels work in approvals and decisions. Don’t get me wrong, we appreciate what can be done, and is, but I personally feel things could and should move much faster.

After the latest episode, which lasted a good half hour she got dressed into her nightwear and is relaxing comfortably on the recliner. Had we went to the hospital she’d be telling her story 10 different times to 10 different doctors all asking the same question as the previous one.

We talked for an hour and even joked some about the system. The tumor itself is acting up, and the cells next to it are dying and have nerves. We are picturing Twisty getting a shot of the Chemo and reacting with a temper tantrum. Her attitude is amazing. She simply deals with it, good humor, and tries to prepare for the next episode. Know it will come. When it decides to show its ugly side is on its own schedule.

Attitude and outlook is so important. She isn’t laying around whining with a poor me attitude. Not even a little. The effect on her, with hair loss, has been traumatic but reached the point where she really doesn’t give a damn about it. I told her the courage she has shown throughout this ordeal has made her more beautiful than any other time. I get why it bothers her. Women grow up seeing beauty on TV and billboards being brainwashed that beauty is having to look a certain way. Hair, weight, makeup, etc… Such a bunch of crap. It naturally freaks them out when they feel they aren’t living up to societies so called model image. She could give a damn now about any of it. She knows the people around her simply want her to get better and wants the same. But it is a process. There have been mood changes but we talk our way though them. Letting go of past bitterness in different ways, forgiving, and moving on with just getting better. She’s always treated everyone important and caring. The times it hasn’t been returned, or with “attitude” hurt her. A few times stand out when first moving up north. I’ve wanted to call these few people out… she simply asks me not to. People have to live with that guilt, if it even exists, so that’s on them. Life holds many unpleasant and confusing times. We all have this experience. From people we thought were friends, and even family. You forgive and move on. You do it for yourself. She once lived a little unsure about her ability to speak out, (though always strong and independent) afraid to hurt feelings or being a bother to others. That Bobbi is long gone. This experience has taught her how strong she really is, the people who actually care and give a damn, and she is going to come out of this stronger, wiser, and more sure of her abilities. I’m proud of her. I’ve always tried to help install a confidence in her, and remember teaching her to drive a huge big boy Harley when she expressed the desire. A few months later she was ripping down the highway with a friend to visit Nigeria Falls on our 840 pound beast.

Anyone thats meet or knows her instantly takes to her kind and caring ways. She had a good day today considering a few rough spots. Proud of her. Thank you again for the kind letters, cards, and calls. To both family and friends. If we can’t respond right away it’s because the days have often turned into nights and the nights into days. Thank you, it won’t be forgotten. You really learn who your friends are, by what they say and do when the chips are down, and feel very fortunate for the people in our lives. We are really missing the kids and grandchildren but hear all is well with them.

Turbulence

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Back home, it’s Friday and we left the cabin last night. Bobbi returned from her chemo treatment Wednesday night and felt well. Walked on the beach some with Lori and Jim, spirits cheerful and uplifted. Knew it was the steroids fused into her IV. Gave her energy and helped her be her funny and carefree way. In the back of my mind I knew it was the calm before the storm. Wednesday night she had terrible dreams where she thought she was in North Korea and they were making her work, pulling her hair when she quit. She was talking to me as it was taking place. It was like she allowed me into the dream. As she cried I just talked softly into her ear that I was there and nobody was going to get to her, and told her as long as she felt me lightly rubbing her back she wouldn’t have people pulling at her. I knew her subconscious was causing the nightmare. Her feet were constantly shifting about. So much in the news about the place and her hair starting to thin. It lasted about 15 minutes. When I started falling asleep she said “hey, your not watching for people” so I assured her I was and that things would be alright. In the morning I asked her if you had any memories the night before and she said a few, about messages of some sort, but felt like she slept pretty good. Shared with her what took place and her memory started to recall different parts of what I explained. I felt so helpless and didn’t know what to do during the time. All I could do was comfort and assure her she was safe.

During the morning her and Lori worked on the Mike’s chair, then became sick and had to rest. Went and laid with her for a bit until she felt better and got up like it was no big deal. A few hours later she took a couple hour nap. I knew after she got up that it was time I took her home.

No sooner did we get home Twisty started swinging away again. The pain was terrible. We used hot water bottles and a heating pad but it did little for the gut wrenching into a plastic container. Pain meds were given and eventually it subsided. We watched a little TV, had a small meal, and she quickly fell asleep in the recliner.

At about 8:00 we went to bed. She slept good throughout the night. I kept waking up checking on her and it was assuring to see her getting such good rest. At about 4:00am I heard her in the kitchen starting her day. Said she slept good and didn’t feel too bad. As we sat and talked she ran her fingers through her hair and large amounts came back in her hand. When she used a comb more. We looked at scarves on Amazon and ordered a couple she liked. They said her hair would thin, and she still has a lot and looks as beautiful as she always has. It wasn’t a good sign though. She put on a brave face and said screw it, hair was the least of her concern. The battle was with Twisty and not on hair.

Then another storm hit. The pain doubled her over and lasted a half hour. It strikes with no warning. Again all I could do was lay with her and try to keep her comfortable. Put on a fan, kept heating bag and pads going. When she was getting sick in the container, with each jolt of pain, I’d gently kept her hair out of the way….each light pass of my hand brought out hair. What a terrible experience she is going through. She can take a great deal of pain so I knew if she was in a ball that it was bad. Medication was given and took about 20 minutes to work. She is sleeping right now. I put on a sound machine with ocean waves and just held her. I realized then I needed to get up and take my own medication, it was a couple hours overdue.

This is what cancer is and does. It’s not easy and not like a cold. I’ve never experienced anything like this. It’s true and real pain. I know how deliberating it can come on with my past heart battles and it feels like it can’t possibly get any worse. I’m going to call her cancer team coordinator when their office is open and see if they can do anything more for her. Things in a pill form don’t do that well while the stomach is rejecting everything. Bobbi rarely used an aspirin before this but knows meds are needed at this time and the relief it brings helps. Doesn’t make problems disappear, just makes the situation a little more comfortable. We’ve talked about what to share and not to share. She wants the real face of this shown. If it helps others then she wants her voice to matter. I get it. You think of things like that when sick. You think of others who are suffering and want them to know that you can get through the worse possible experiences and come out on the other side. She was softly humming before falling asleep.

She has a week off of treatments thank god. Her lab numbers all look good and they are surprised at this. She is hitting back at this with everything she has, and will beat it. It’s certainly fighting back but I know this woman and know that Twisty will be decimated. It’s not a walk in the park and there is nothing good about it. What amazes me the most is that in a few hours she will be getting back up and going on with her day. After this bout I’m thinking it will be simply a day of rest and liquids. Have to flush the chemo out of her kidneys. We thought the pain and wrenching was from the chemo but her doctor said that it was the tumor itself. The third week of chemo directly attacks the tumor itself. It’s early, only 8:30. I looked outside and see nothing but fog. In the distance is the moon barely seen. A very dim light, but will be brighter later tonight. Much how each day has been. Dark ones and bright ones. The dark can seem so unforgiving and ending but the light does return.

It’s now about noon and she is up and about and doing well messaging people. Talked to her doctors and they are going to do a different pain management program. This morning was a big alarm going off and hopefully have things better controlled. She read this and I asked if she was comfortable with sharing this and she said “Definitely, you can’t sugar this”. I do a lot of writings that aren’t posted, so was a little unsure. But she is determined to share this experience but also doesn’t want people to worry. I mentioned that this one might have a few worry, she replied “Well they’ll soon see the brighter days of recovery”. I guess life really works this way. Not all days are butterflies and roses. But you push on, climb your mountain and don’t whine because there are others fighting battles just as serious. Life has its moments and not all are great. Yet they are better than no moments at all.

Endurance

October 1, 2017
Bobbi went with her brother Mike to Traverse City this morning to see Lori. They will leave Wednesday early for her 3rd treatment, they will meet me at the cabin in DeTour Village after. With her having such a difficult day yesterday I’m hoping for the best on her visit.

She doesn’t let anything stop her from embracing life at full speed. It’s difficult watching the one you love struggle with a health battle, but certainly not as hard as it is for them going through it. Really dread Wednesday’s and the days after. Have never experienced anything like this. The home feels so empty without her. Well, it isn’t a home without her. Have the Lions game on but she’s all I’m thinking about. I am in such awe of her. Her spirit has lifted many throughout her life. She’s personally saved me in more ways that can be counted. When we met I stayed out too late, drove motorcycles too fast, and after we met was in bed by 10:00 each night! Always got up with her at 4:30 while she got ready to go to work. Missing your best friend sucks. I’ve dealt with Asperger challenges throughout my life and she has helped in countless ways with this. 1Q8A2078

Somedays we take so much in life for granted, thinking that we’ll have forever to live and enjoy. Scares like this sure put things in perspective fast. I know she WILL beat this, we don’t allow any other thought. I feel bad I won’t be with her on the next treatment but glad she’ll be with her sister. We use laughter and love to get through the rough days, but yet silent tears slowly roll out while looking out the window alone in the middle of the night. Sometimes I think I hoover over her like a helicopter but can’t seem to help it.

Her attitude is great. Friends not need worry about this. Each know her and the pictures shared show you how each know her. Free spirit, happy, and positive. Each have a story about her. I can not express enough how much this support has helped her. All she’s ever cared about, above monetary and material things, is her family and friends. While I dealt with my health battle she was the rock. Now I’m fortunate to be one of hers. It hasn’t been easy for either, lots of sleepless nights. But it’s taught us how lucky we are to have lived the life we chose to live. We have a long battle ahead. Yet don’t look at the length of it, but the quality of it. She’s always been a giver in life, never a taker. I’m so proud to have her as my wife. So very proud of her attitude taking on this battle. Have naturally always heard of the word cancer, and now it’s one I hate to hear. We talked many times about sharing this experience. So her family and friends can stay updated, and what’s been important to her is to possibly inspire others who themselves are fighting this terrible disease. Pancreatic cancer is a tough one, they all are. It’s a tough battle for people to go through. She had the choice to lay back and feel bad, or get up, get dressed, and swing away at it. It tells you her character. A lot of unanswered concerns. A big surgery not too far from now.

We can and we WILL get through this. Thank you for the calls, comments, facybook messages to all! She is a fighter, always has been. She will beat this!