Don’t Drop The Rose’

Seen The Guess Who last week. Bobbi’s mom surprised us with two tickets for a night out. A year ago, to the day, Bobbi was discharged from the hospital after undergoing her Whipple surgery. After the concert the car had to be pulled out of the mud by a tow truck though! The right side of the front wheel was parked on grass, and it sank about 4 inches into the soft wet ground. Being a front wheel drive car it only took a couple spins of the tire and there it sat. What can you do? Shit happens. Made little sense to get worked up and upset. It wouldn’t have suddenly lifted the car and float it over two inches. Was a good concert and felt good to get out. The temps here in the Soo finally hit 60 so that’s a reason to celebrate on its own. Bobbi has spent the last few weeks getting her seedling started, and garden area set up. Looking forward to some calm evenings simply enjoying peaceful nights and hearing the freighter horns passing through the Locks. It was one long winter. Nice to have it in the rearview mirror. Though now dodging the pot holes in the road is an adventure. Had great news on the birth of a new Grandson, Jordan Everett Stouffer. Adam and Julie’s world suddenly changed on April 4th. Really happy for them. Believe everyone should experience the love that bringing a child into this world together brings. Wishing the world was a kinder and more peaceful place right now, some interesting times we live in. You really do have to live one day at a time. Turning off cable news and all the talking heads on TV is huge. 

Bobbi and I have talked a lot on the next round of her medical scans and follow-up appointment. She’s decided to not go through with them. She’s said realistically what can be done if the news wasn’t good? Her doctor told her endless treatments of chemotherapy for palliative care if things turn south. The last paperwork from radiology said that spots on her lungs were suspicious for Mets and should me monitored. First reaction was disbelief. Really? After all this? “Might be, could be, believe so…” Have heard it before to only become concerned and stressed of what the future held for false readings. Not going to go there this time. She told her doctor that she wasn’t going to live her life based on one scan after another. If anything could be done in helping her great, but playing whack a mole wasn’t going to be the road she was going to travel. Many assumed after the surgery, radiation, chemo, ringing the bell, that she was “cured”. We knew that wasn’t the case. It’s easy to confuse being done with a set of procedures as the illness being beat. She had exhausted all medical procedures that could be done. She’s in a really good space not thinking nonstop about whether its Mets or isn’t and accepting today for what it is. The good, the bad, an the ugly. Really, all we could learn from this point on is bad news. These are some heavy issues discussed. I support her decision 100%. I did the same with my situation. Have everything available to us that the hospitals can provide. Bobbi said she didn’t need a ton of tests, monitors, needle pricks, to tell us what she already knows. If each of us are happy with today, why enter into different waters? We believe we’re going to continue to beat the odds and so called statistics. Chemotherapy indefinitely would destroy the quality of the life Bobbi is determined to live. Whether its a year or ten years. Ask her how she’s doing and your going to get thumbs up and a smile. She is one tough woman. Yet a hug and understanding with no words exchanged go a long ways. In addition to a few pep talks now and then. She knows what’s going on and is facing things like a warrior. Its hard to read either of us because we tend to put on our best face during the worst times. She’s not giving up or quitting. She’s deciding what’s best for her and what her wishes are. We are looking forward to many things the next few months.

This experience has certainly opened our eyes to a lot of things. The people in our lives are keeping the wheels on the wagon going. Emotions really have to be kept in check. These are tough times for millions of people. I’m all for freedom, baseball and apple pie but a majority of people are living from paycheck to paycheck. You just have to keep on pushing forward though. Have your priorities on the things that matter most in order. It’s a shame what’s happening to families, friends, neighbors when hardships hit. The loss of a job, falling ill, many are quickly drained of lifesavings and poisoned with promises of false hope. Insurance and the price of medicine is a joke and should be a crime. Insurance companies decide life an death decisions that should be left to doctors. I could go on and on. Is there bitterness and anger? Yes, a lot. But so what. It doesn’t change anything. Now the politicians will again start their rants on how “they” will change the system. The system won’t change as long as big money and power are calling the shots. Power doesn’t conceded power too often so not holding our breath on that one. Many live on the hope each day that an accident or illness is avoided. Insurance is simply a coupon. Our most positive experiences have been dealing with the workers on the frontline of healthcare. Most the doctors, nurses, support workers have been a huge blessing. Is it embarrassing? Sure, at times, it sucks telling bill collectors they’ll get what we can give them and no more. I tell them their name is put in a hat and who gets their name pulled out gets a bit. If you call 40 times a day your name won’t even be put in the hat. They could careless about a family already having to skip meals, cut medications, or both. Or their car flashing “service engine soon” is a panic light. Won’t even get started about the telemarketers! A lot of times, out of nowhere, loved ones and friends have changed what seemed like dire circumstances in our world that we had no clue how we’d deal with them. We’ve had to make some tough choices between different things but you do the best you can with what you have. It’s nothing to feel ashamed about. As many have heard, It’s not about getting knocked down, it’s about figuring out how to get back up. That really is what defines a persons character. I’ve witness some unbelievable courage and strength from the woman I’m blessed to call my wife and share our world together. I’ve really grown closer to her family the last few years and it feels good.

Traveling long distances is a thing of the past, physically and financially. There are good days and bad days (not going to get into all that). You make adjustments. You don’t let a bad day or moment define you. What use to really bother Bobbi was hearing “your looking good” (after having just lost 5 pounds and not sleeping for 2 days). She understands it now. Compared to past pictures and videos being on deaths doorstep it’s certainly true. She takes it as the compliment its meant to be. Would you rather hear “man, you really look like crap today”? Do the best you can, tackle each day with faith, wear your chains with grace, and believe you will get through whatever life throws at you. Not an easy chore at times. It’s about attitude and being unafraid to tell your challenge “screw you, not today”! And before you know it you go to bed and start the process all over again. The impacts of our family and friends is what heals the heart the most! A short message, a call, card, go a long way. Allow yourself, and loved ones, the time and space to comprehend everything. There is grief, anger, sorrow, victories, life is a rollercoaster. Know when your on calm waters because you can be assured your boat is going to take on water at some point. 

And finally, if you know someone battling a health issue, a loved one, friend, don’t feel sorry for them or define them by their circumstance. Simply love them and know each person is a temporary gift in each others life. Don’t let petty gripes turn into long drawn out battles. Don’t let the fruit rotten before its picked and we heard from someone important to us not to drop the roses that come your way. Look for the good in others and speak up for the ones who have no voice. This is our last posting so thanks having followed and encouraging us. Hoping something will help another when their boat takes on water.

Faith

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.

One Day at a Time

September 17, 2017,
The port where the chemo cocktail during treatments will be put in, here in the Soo on Tuesday. Treatments begin this coming Wednesday, the next day, in Petoskey. Friday was spent there, having lab work done and meeting the doctor that She’d be dealing with. He was a nice man and had a sense of humor. Bobbi liked him so that’s what counts most. Having spent 45 years working in the field of medicine and helping others her instincts were sharp. When he first came in I wasn’t sure, he asked her how she was doing, which she replied “good”, he replied “no you aren’t, you have cancer”. He had a point… but her attitude was good, she had been hurting a lot early, but at the moment good. The doc was about 65, and had a warm smile. I couldn’t image the lives he’s seen in his lifetime. Things are being setup for Wednesday’s. Hitting the road early, when it’s still dark, and returning later in the evening. Side effects would be many. The illness has already made life tough, so two different battles being fought. The disease and the medicine used to shrink the tumor. Nights have been rough. Nausea with stabbing and twisting pain. It’s last about 30 minutes. All I can do is keep her hair out of the fluids her illness is expelling. When she is sweating, cold wash clothes rotated in and out of the freezer. One feels so helpless. Lori invited us out to relax outside of DeTour Village, at their summer cabin, so we drove here after the trip to Petoskey. Her mothers cabin is next door so it was nice to see her and Fred yesterday and for a bit today. Had a nice meal, walked the beach, and sanded away on an old chair being refurbished for her brother Mike. He’s done do much for others that it’s a project many have taken on. The chair, a rocker, was somebody’s pride and joy at one time. But it certainly seen it’s better days. It had been restored to life about five times. Old springs, strings, rope held layers of fabric. The wood and frame is nice, made of hard cherrywood. Yesterday we spent the day on it. Passed time and kept us busy. We talk nonstop, about everything. Then BAM Twisty shows it’s nastiness.

Today we spent about two hours on the beach. The sun is bright and the waves were loud. They snapped at the shoreline in a calming way. We looked across the water and just took everything in. She had spent her early years, sitting in the exact spot, wondering what her future would hold. Now she was here, looking across the water reflecting on how it’s being lived. She laid back on the sand, arms outstretched, looking up at the sky. Her head and arms facing the waves. The white foam of the waves would cease into little bubbles and color the sand a dark wet tan. They stayed about a foot from her head. We listen to the waves. No man made sounds could be heard. Just the earth. A wave suddenly splashed higher on the shore and lightly broke to a calm stream and gently brushed her arms and hair. It was like the Great Lake had blessed her I said. A body of water that has taken freighters and ships down gently touched her. A force that can be so powerful, which has taken real lives, calming her today. She laughed and sat up, hair wet and curly, sand all over, and laughed. Then laid back and welcomed the ones that barely reached her.

She picked up a stick and started to draw in the sand. I asked her to draw what the cancer looked like in her mind. Draw whatever came to mind. It was a twisting barb of a tornado shape to the bottom. When she was done we wrecked it. Getting rid of it like she is going to beat it. She asked me to use the stick and draw my heart disease. I drew a heart, and took black weeds and piled them randomly on and around it. We kicked it away, telling each to go away. It was therapeutic in a lot of ways. We are going to keep the stick of course.

We talked and talked. About the future and the seriousness of things. Her cancer and dealing with my palliative care issues. What we each wanted and didn’t want. We each agreed that when a person dies their spirit is united with the important people who left earlier, and that we’d be able to fly.

It was nice to spend our weekend in such a serene place, among many islands. It’s on the very eastern tip of the Upper Peninsula of Michigan. Today is Sunday and we are working on the rocking chair on and off. Football is on the TV buts it’s mostly background noise. I care little about whose playing and what scores are. I use to read world news constantly and couldn’t go an hour without reading something on the internet. Now, it’s like I really could care less what’s going on in the world. It’s strange that so much can take place in your life, change it, in just a few short days. Short days that have felt like a lifetime. Drawing in the sand together was the right thing at the right time. We were marriage 100 feet away, in her mothers yard. We talked and talked. For some reason she likes me reading to her so this is something new we’ve started. We plan on doing this while her chemo medicine drips into her heart. The book I started to read turned smutty on us, we laughed and said that we doubted I’d read it during treatment. We have a lot different reading material so it shouldn’t be a problem. Plan on reading some books Jen’s mother Carol sent us, and a novel. This is probably our last weekend of nice weather here. The trees are starting to turn colors. So many unknowns right now. Have thought about what to share in these writings and what not to share. Not naming a lot of the doctors and hospital staff to protect their identities. Bobbi and I want to keep the family updated, in addition to it possibly helping others who are going through similar situations down the road.

For we live by faith, not by sight.
2 Corinthians 5:7 

Grand Rapids

September 12, 2017
What a busy week. On Labor Day we packed the car and preceded to Grand Rapids, Mercy Hospital. Bobbi had her CAT done but hadn’t received any information on it yet. Her cancer team in Grand Rapids told us about the “Hope Lodge” a block away from the hospital. It cost nothing to stay there, sponsored by the American Cancer Society. I thought no way. We were a long ways from home and had no idea how we’d afford the journey. Like millions of other families we lived month to month on her social security. I was prepared to simply sleep in the car at night. Wasn’t a big deal. The big deal was what was taking place inside my wife’s body.

The hospital first wanted us there on a Tuesday for a imaging test called EUS for staging of the cancer. This would provide the information that haunted us. The test was completed and the next few days until Friday seemed like an eternity of time. The Hope Lodge was extremely comforting. Everyone there was fighting cancer and were battlers. It felt surreal walking into the doors. A kind lady named Stacy greeted us at the door and took us on a tour. There was a exercise room, reading room, billiards table, and a huge kitchen area for meals. The rooms were nice and very clean. What more could one wish for during this tense time? Guests were able to cook meals. Refrigerators were assigned to each family and one room had shelves stocked with different foods from the kindness of others. We can’t say enough good about this place. Everyone was kind and supportive. Meeting other cancer patients was good. Learning of their own personal battles helped a lot. We certainly all have our mountains to climb. She and her sister Chrissy, who lived about 45 minutes away went out together for the day on Thursday. The visit picked up her spirits and helped pass the time before the meeting. The wait was torture for us. Bobbi was experiencing nausea and stomach pain. The nights were long. Shay is going to school in Australia, which is a 12 hours time difference so it was nice messaging with her in the deep of it. During the day we did the same with Sean and Jen, in addition to Bobbi’s siblings. Each helped us a great deal. Everyone was concerned and supportive. What a situation our family was suddenly confronted with.

On Friday we met with her main doctor, a lady named Jill. She explained the results of the different tests and what our options were. The tumor was located on the top of her pancreas, which was more positive than in other areas. Because it was in this area, blocking her gallbladder duct, Bobbi’s body showed that there was something wrong. The change in skin color, the nausea, the blood sugar numbers bouncing all over the place, not to mention the weight loss. All symptoms that told her to get in and see our doctor. Some people dealing with this type of cancer get little advanced warning. Which in turn makes it more difficult to catch and treat. The CAT scan showed no spreading of the disease. The best course of action would be chemotherapy and then a surgery named ‘whipple’. The goal was to shrink the tumor and stop any cells from spreading, and when it was safe to surgically remove it. We’d began with 2 months of chemo, have another CAT scan, and see if it did in fact shrink the tumor. If so a month would be needed for all the chemo to leave her body and surgery. A major surgery. After this more chemo. A total of six months. Once each week, for three weeks in a row and then a week off. The chemo treatments will take place in Petoskey, Michigan. About an hour and 45 minutes away. On the way home we stopped at Lori’s and Jim’s house for a couple of days. Could think of no better place to shelter us from the storm. She’s close with everyone in her family. Mike and Steve, her younger brothers, and Lori and Chrissy her younger sisters. her father passed away some years back, of cancer, and that is still fresh in everyones minds and heart. Her mother, Betty,  are close as well. Its been a very emotional three weeks for everyone.

First a port will be placed into her chest. This is a tube where the Chemo will be dripped into. We are waiting for the local hospital here in the Soo to call us on the date. On Friday we travel to Petoskey for our first consultation visit, in just a few days.

On Sunday we talked with Sean and Jen. They had told the grandkids. We were waiting until we learned more on the battle plan. It must have been a difficult meeting to have. We are a close family and just the word cancer is scary. We made a short video to show them a visual that things were well, and followed up their talk with a FaceTime call. You want to protect the people you love from worry and stress, but at the same time its important to have the children know that this battle will take place and that we are going to beat it. We have some good things in our favor. Catching it early and the location where it the tumor was discovered. We aren’t out of the woods in any fashion. Its going to be a long and tough road. Bobbi’s attitude throughout this has been amazing. There are moments of unsureness, but they’re talked through and discussed. We could sit back and just cry and let the sorrow drain us, or we can put on the armor and get ready for the fight. Jen sent us lots of oils and her mother Carol sent us lots of reading on holistic information. We’re very close with her parents. Every holiday was spent together while living in Wisconsin. Bobbi has chosen to only share the news with a few friends there as well. She doesn’t want people to worry or feel sorry for her. Which I get 100 percent. People will learn in time I’m sure. But right now its a family matter and all our energy is being spent in preparing for the chemo and surgery. Getting our ducks in a roll with insurance coverage and so forth. We’re on medicaid so lots of pre-authorizations and phone calls are being made.

We are choosing to believe that we can and WILL beat this. There is no room for doubt. I can’t began to imagine whats going on in her mind. This is the strongest woman Ive ever met, whose taking on a battle that is going to be beaten. We now have the facts, the battle plan, and now waiting on the first treatment. In the meantime its important to get as many calories into her system as possible. There have been some rough spots of sickness throughout the day and night. Its such a helpless feeling wanting to spare her the pains and be unable. I’ve dealt with over 25 hospitalizations the last 6 years with heart issues. A failed quadruple bypass surgery, and 19 stents put into my heart. Everything medically that can be done has finished. I’m on palliative care for comfort. My battle may help her in knowing that we can do anything we put our minds to. We each look at life differently than just a few weeks ago.