Bobbi’s View: A Second Chance

DSC07672It’s March 26th, a day before surgery. We packed our little Prius last night and we’re ready to go on the 5 hour car ride to Grand Rapids. We first stopped at Mercy hospital, getting typed and cross matched for 2 units of blood. Then registered at the Hope Lodge. It was a quiet ride, blue skies and dry roads thank god. The only storm brewing were the thoughts in my head. The Whipple surgery is going to take all day and finally will remove the tumor from my pancreas. I’m glad I’ll be sleeping through this ordeal, if it goes bad I’ll be unaware. My thoughts are with my husband Mike and our kids and grandchildren, and of course family. My sisters and their husbands are also waiting. I knew what to expect, have been in operating rooms since I was old enough to get a job. Working from my 20’s to my 60’s in them while living in Wisconsin. My close friend, having succumbed to pancreatic cancer post Whipple, was on my mind. Lucy and her battle with cancer made me try harder while preparing for the surgery. Positioning ones mind is the real battle, to not let it’s ability to rob you of moments at insecure times. Also on my mind was my brother Steve, who’s also fighting cancer, was undergo a serious surgery himself in a couple of days.

In the morning up early sitting in dining room. This could be it. There was a chance that I wouldn’t make it out alive. I tried not to think about that. Mike and I trained a month for this and I was ready to get Twisty the heck out of me! What a wonderful place this was to find peace and serenity during the worst storm of our lives. I can see the hospital parking lot from the window. It’s pouring rain and chilly outside. I finish off the last of my GED drink (some special surgical post recovery drink). If it’s good for you chances are it will taste bad. One hour before arrival time and all is quiet. I feel strong time for twisty to surrender. I sat for a bit then went back to our room. We slowly (Mike and Sean and I) proceeded to the hospital. Registered, had copies of advanced directives made in the event things didn’t go as planned. Gown on, IV in, SCD stockings on, lying on hospital cart awaiting anesthesia to place art line and do abdominal block. After everything was done family came into pre-surgical room to visit. 6 of them in all. Took great peace in the fact Mike was rubbing my head and hand as he always does. He knows how to soothe me in times of hurt. I would look at him and he’d just wink, we didn’t need words. We knew each other’s thoughts. Dr. Onesti came in and said a prayer with family. It was calming. Off I went. I recall little after that. Mike received text messages throughout the 6 hour operation.

The next few days were a blur. Hooked up to different monitors, a pain pump (which I only used once), and hospital staff coming and going endlessly. All I wanted was sleep. I was told everything went extremely well.

When things calmed down I was up walking and soon sitting in a comfortable chair. The nurses were all amazing! Family visited, a good friend I grew up with also stopped in to see me. I felt like I had been cut in half. Which, by looking at the 13 inch incision, wasn’t too far off from being true! Sean and Mike took turns sitting by my bed throughout the day. Each day the surgeon stopped in she was amazed at how things were going. Slowly went from clear liquids to soft foods. Very small amounts. At first nothing stayed down. More walks. I pushed myself with each one. I watched and remembered how Mike did the same during his hospital stays for his heart battles and it helped me do the same.

Before I knew it, after only 3 days I was cleared to be released! Unbelievable! Since the Hope Lodge was across the street if anything went bad I was but a short distance away. Plans were to stay for a week after the surgery then see the surgeon before returning home to Sault Ste. Marie. At the meeting we’d go over the final pathology reports. Having our son Sean with us was comforting. I knew this entire experience was tough on him, as it was for everyone, but especially him being my son. He told me he had no idea how he’d be able to handle funerals for both his parents at the same time. Mike’s because he knew he’d soon follow from his heart challenge, it’d simply be too much on it if I didn’t make it. I didn’t even know what to say back. I couldn’t image what that’d be like. Mike’s his stepdad but the two are as close as blood. Thank God things went well!

We spent the week resting, watching CD’s from the huge selection here, playing pool, and taking walks inside and outdoors. We also spent a lot of time laughing and enjoying each other’s company. We had many meals together, though mine were different than the mens. A few nights were tough and I was sick. The two worked like a team helping me get through them. Put together puzzles in the huge dinning room too. In addition traveled to see my sister Chrissy and her husband, niece and her young children. It was a wonderful time. Mikes usually very quiet and it was nice seeing him relaxed and talking. Though he looked drained and exhausted. For the first I feel like I’ve been given a second chance at life. I plan on taking full advantage of it!

We learned about this place, appropriate called the “Peter M. Wege Guest House Hope Lodge” from the hospital next door. It was literally across the street from It and the Lacks Cancer Center. The best way to describe it is to quote what the website shares. (https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge.html)

“Each Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting better. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease.”

The experience here is like being in the calm of the eye of a hurricane. It feels like a real home. We’ve met other survivors battling their illness, staff and volunteers who shared their personal stories and battles. It was empowering walking into the doors of this beautiful and recently remodeled building after such an emotional and physically draining operation. Always being met with a kind smile and greeting.

We can’t thank the American Cancer Society enough for this. Thank you. Before my diagnosis we hadn’t a clue how we’d get through it. It was extremely scary and unsettling. After 25 hospitalizations and 19 stents, radiation, EECP, with Mike, the last place we wanted to be was in more hospitals.

On Monday we met with the surgeon, Doctor Onesti. All the pathology reports were completed. The tumor had adhered to the portal vein and some cancer cells remained on it. Plans were to undergo radiation for 5 weeks, daily, and 2 additional months of chemotherapy to whip them out (next appointment in Petoskey is April 25-26). Everything else looked great. Don’t know how I’ll find the energy to heal and be ready for this next step but I will. At least Twisty is out of me and beaten down. I am very grateful and so far lucky. Through the grace of God, prayers, positive attitude and love this journey will continue for a bit. Have put on this post different pictures. Thank you for the support, love, and thoughtful cards that filled our mailbox! We’re going to have one heck of a party in Wisconsin when this is but a memory.

Different photos of the Hope Lodge –

Is Twisty Hiding in the Shadow?

We drove down for the liver biopsy last night, checked into a hotel a block from the hospital, and went out for a nice supper. The surgeon told us last week there were a number of new spots on Bobbi’s liver and the biopsy would provide us whether or not there’d even be a surgery. Showed up on time, she was prepped, blood taken, and we waited for the procedure to be done. Thinking positive the whole time but preparing ourselves for grim news.

We weren’t  expecting  a Christmas miracle, if Twisty isn’t just hiding in some small cell we’d be lucky.  There wasn’t a spot to be seen. Strange. She moved into different positions on the CT and still nothing. A different hospital than the first imaging was done. All week long Bobbi has lived with the thoughts that her cancer has spread. Trying to stay positive but even the surgeon, going on the films they had, thought it had spread. When they said there was nothing to biopsy we about ran out of the hospital. I wondered if the beast is watching in the shadow. Damn thing.

Don’t know how, why, or anything in why one place said there was and then another saying all was good. Elated for the good news but also a bit angry that she, and the whole family, had to spend the last eight days mentally preparing for the worst news possible. It was fighting Twisty and having it suddenly becoming a dozen of them. I don’t trust this monster. It makes a horror show mage in Hollywood boring. It’s the stranger in the dark.

We’re unsure what the next step will be. Calls have been made and we’re thinking the original planned Whipple surgery will be next. Get the tumor out of her pancreas and follow it up with 4 months of chemo. Knew it was too early to step out of the batters box. Knew we had to stay and think positive, which we did, but things certainly didn’t look good. Onward with this battle, there will be no rest until Twisty has been destroyed. It’s still inside her and it’s shown to be crafty and deceiving. It felt like Bobbi was walking the Green Mile, going to be strapped into the electric chair, and the phone ringing at the last 5 seconds before the switch was flicked given a full pardon. Each day dreading waking up because it was the first thing on both our minds.

The “You are Loved” party in Wisconsin took place and really brought a smile to Bobbi’s heart! Was so happy to see her having fun talking with so many.  It was so good to see her laugh and smile, even in the midst of unsureness in severity. We FaceTimed with everyone and seeing people dancing and wishing her well, missing and loving her, can’t be described in words. Now with this good news she is riding a well deserved wave of happiness. Yes, a major surgery isn’t a great thing thing to look forward to, but knowing that she’s still in the fight is a blessing. Thank you to everyone who took part in this, as well as the support and prayers of others across the globe. It has become a global support. People we’ve never met in person, from Wales, England, Italy, Mexico, and new blogging friends here have been unbelievable. Never imagined that so many would take the time to lend their support, recommendations in getting second opinions, prayers, gifts, all of it! I look back on how we dealt with this last week, look at the goofy video made doing the coneheads skit on the last post, and I’m more convinced than ever that positive thoughts and energy make a huge difference in today and the reality each day brings. There will undoubtedly be more fastballs coming. Not today so will embrace it. She WILL beat this. There is fear but no compromises. It will and hasn’t effected our celebration of Christmas. It’s wanted to! The mental anguish has been the toughest it’s ever been this last week. One I wasn’t sure I’d personally be able to endure physically. But just when your at the edge and brink of despair there is always hope. A simple for letter word that now has so many meanings.

Thank you for the read. Very much appreciated. We couldn’t have the attitude we have without it. Never give up! Pick up the bat no matter how heavy it may seem or how bad the last pitch hurt smashing you in the head and swing away. We all have this ability. May not feel like it at times, but when push comes to shove we learn things about ourselves we never knew existed. Until the next writings please embrace today and try to find the good in it. Hard to do when physical pain wants to be boss. All of us are human and will have these times. Hard to put one foot in front of the other while our bodies and thoughts are saying no more.

There really is no description in believing, even being told, that the cancer has spread to there not being a single spot. The doctor said it might have been inflammation from her first bile stent becoming dislodged. Not going to lift our foot off Twisty’s neck, it’s going down! Going to continue to think positive, make goofy videos, and move forward. When dealing with cancer it’s rare to get good news. It certainly was a relief to learn this good news in the midst of this battle.

UPDATE 12/14/17 – Plans now, after several phone calls between Petoskey and Grand Rapids this morning, is to have 2 more months of chemotherapy and then another scan to see if spots reappear. They’re being cautious and before they do the Whipple procedure. Which makes sense yet knowing the tumor in her pancreas is still there is naturally worrisome. It is what it is and all the worry in the world won’t change anything. We’ll continue to take things day to day and keep swinging at the pitches. Waiting now to see when the chemotherapy will resume. It’s not a set back. Feels like one, because their not really “sure” and I expect things to be in black and white with no in between. All I can do is be supportive and remain strong for her.

You are Loved”P

The anticipated CT scan took place as planned. Bobbi stopped by the hospital a few days early to have labs done and picked up two bottles of contrast dye she drank before the test. The label on the bottles said they were like a vanilla flavored smoothie but Bobbi shook her head with disgust drinking them down. A long ways from a smoothie she said. They then placed an IV in her arm. Why they continue to stick needles in her, for blood work, IV’s, and such when she has a port confuses both of us. Use it!

Two days later we were back on the road to Petoskey to go over the scan with the doctor. First seeing the nurse, who took vitals and her weight. Then about 45 minutes alone waiting to see the doctor. Usually it’s only five minutes or less after meeting with the nurse. When he came in he explained that the scan hadn’t arrived but the preliminary report did.

He said that everything that could go right went right. The tumor shrank to 3 to 4 millimeters. We were elated. Wow! It went from 3-4 centimeters to millimeters! What we didn’t catch at the time was that he was talking about a tumor present in the liver. Not the one in her pancreas. When he mentioned liver I told him we knew nothing about a spot on Bobbi’s liver. This was the first time even hearing about this. Something didn’t make sense or add up. WTF? When asked about the tumor in the pancreas and it being butted against her portal vein he said the report only detailed the liver. We thought that it must be good news if it went down, the chemo was working, because it wasn’t even mentioned. He asked what plans the surgeon had and we explained that a Whipple was the next step. He said that he didn’t know what criteria the surgeon wanted but perhaps no surgery at all. The tumor had shrunk so much maybe more sessions of chemo? That would be great!

We left the meeting feeling elated, everything that could go right went right he 0said. This was good news right?Though in the back of my mind red flags went up. We text family and relayed the good news. We drove back excited that there was a chance no surgery would take place. Bobbi wanted to celebrate getting a cream puff. There was a bakery across the street from the hospital so we made a quick stop. No cream puffs, she settled for something else.

On the drive home things simply didn’t add up right in my mind. I didn’t want to say anything and wreck the good mood by questioning things. Everything that could go right went right we were told. This must mean what it implied.

After we got home we sat down and read a copy of the report. It gave a detailed summary on the tumor. Problem was that it was a new tumor we didn’t even know existed before today. When it got to the pancreas the report said that the known mass there had poor detail imaging. That was it. One sentence on Twisty. We googled all the medical jargon that the report was written in and learned the tumor he spoke of was in fact in the liver. There were also spots on her lungs but they did appear to be cancer related. Which is what we’re being told today.

Maybe it was scaring from the result of her bile duct problem? The tumor in her pancreas had blocked it, which lead to the jaundice and then her cancer diagnosis in August. A temporary plastic one was placed in the duct to relieve pressure. This fell out about five weeks later and was replaced with a metal one. So maybe it was a spot on the liver from this? Had to be. We would know more when the surgeon calls us from Grand Rapids after they receive the actual imaging. Knew it would take a couple days.

We lived by the phone, waiting to hear from her surgeon. When Friday arrived every thought was on the phone ringing. What a situation. To live your entire life, to suddenly be waiting for a 5-10 minute phone call that would change it forever. The hours passed with no news. At about 4:00 it rang. It was the surgeon. She explained to us that the imaging did arrive late in the day, but because it was a Friday her team wouldn’t be able to read everything, compare them to past scans until Monday. She said she wanted to call us and at least inform us that things did arrive, knowing we were very concerned. Monday? Seriously? I understood why, but it seemed like years until then.

So we waited, determined not to worry and spent the weekend watching TV, cleaning the apartment, talking and finding things to laugh about. Attitude is important and I know how to get her to laugh. We each said we were having bad hair days in the morning. Both being bald made this impossible of course. But it lighten the mood. Bobbi’s energy returned and she was busy as ever going about the day. On Sunday we drove over to see her brother Mike and spent most the time laughing and having a good time. Her family are really good people. We have our moments like any family, but who doesn’t. Situations are dealt with and moved on. One can’t help but leave in a good mood after spending time with him.

On Monday morning Bobbi went with her mother Betty to a doctors appointment for a hip problem that’s been causing her a lot of pain. Which again shows you the type of woman she is. We are waiting for a phone call, that will change her life, one direction or another, and she makes it a point to still take her mother to the doctor. It’s one of the reasons I love her so much. She has always puts others first, with no hesitation.

When she got home we sat on the couch and waited. The hours passed slow. Around 4:55 the phone rang. The called ID said it was from Grand Rapids. It was her surgeon. The call took the wind out of both of us.

The doctor said that her team looked over everything and she was highly concerned about “spots” on her liver (more than one). We asked if it could be related to the bile duct problems from the stenting and she replied that they considered this but some spots were definitely unrelated to that. There were spots that didn’t show up in her scan in August, which were present now. Her scan in October, when she had the metal stent put in showed them, but nobody informed us, assuming we most have been aware of it already. It was the hospital here in the Soo who did the scan in October and they had no idea what we knew and didn’t know. I think the hospital figured we were informed already. Surgeon said the the liver tumor started out about 14 millimeters. Chemo shrank it. Bobbi asked her point blank if it meant her cancer is metastatic, has spread, their was a moment of silence, and surgeon gently said she believed so.

Tests for a biopsy will be done on Tuesday in Petoskey with guided ultrasound. Problem is the chemo worked so well on this tumor that it may be hard to biopsy to know for sure. The fact that it shrunk is a sign in itself. Scars don’t shrink. She also said there were more than one, unrelated to stent problem. It was a very uncomfortable conversation. The surgeons voice sounded sad. We won’t know anything for sure until the biopsy. She recommended that chemo be continued, if it wasn’t making her too sick.

So that’s where we are. Hoping for the best, to hear that it’s nothing to be concerned about, but also know that it’s a game changer. She said there would be no sense to do the surgery if it has spread to her liver. Why put her through that ordeal she added. We are going to drive to Petoskey Monday night, get a room, and be at the hospital early at 8:00. It takes about 72 hours for the results. If they can get to it. If it has spread she will have to stay on chemo forever she said.

I told Bobbi I was done writing about this. She insisted that it must be written. I’m not comfortable doing so. She wants this to help others and it’s very important to her to do so. We don’t know anything for sure. Not going to jump to conclusions without the facts. Angry that we had to find out about the liver spots the way we did. Maybe nothing to be concerned about. The fact that the spots responded to the chemo isn’t good. The fact that the spots shrunk isn’t good. The fact that no one has mentioned anything about the pancreas tumor against her portal vein, is concerning. No mention of it. That was the beast we thought we were fighting. What I do know is that there is a whole lot of fight left in us. We knew that this wouldn’t be easy. It feels like we have to ask the right questions to get the answers.

Yesterday I went out and got us a small Xmas tree and it looks wonderful. We had put up decorations and some lights 2 weeks ago, but not a tree because we thought she’d be in the hospital for the surgery a couple weeks. Bobbi decorated it beautifully and we are still determined to enjoy the holiday. Very hard to do, but refuse to allow it to strip from us the good. We’ve cried, and I hold her at night close. It’s a very confusing time. I looked at her decorating the small tree and decided to take a shower. I wanted to hide my tears. I love her so much and it’s so painful to watch her experience all this. August 24th feels like a million years ago.

There is a gathering of friends being held in Wisconsin this coming Saturday, simply to show us we aren’t alone. It’s overwhelming seeing how many people are involved and doing so much. She is feeling so much love from others that she often sheds tears when a Facebook notice sounds on this iPad. We have it set to sound like popcorn, and at different times it’s like a large kettle is being cooked. Thank you family and friends. Life often shows the worse of humanity on TV and in newspapers. This shows the very best in humanity. The worst three words heard was “you have cancer”. The best three words she has heard is “you are loved”. Thank you are words that can’t describe what this feels like. She has touched so many lives, and will continue to. You have certainly helped her in ways that only love can do. When we decided it was time to let others know what was going on, until now, the love shown has been unbelievable.

The battlefield may have changed a bit. But there is no quit in her DNA. Not now, not tomorrow, not anytime. Tuesday more tests, results probably Friday or Monday. Have gotten about 5 hours a sleep these last few days. How do you tell your mind to shut down when there is no off switch. We move forward and deal with today. She is feeling good, no pain, but it’ like getting hit by a fast ball. Shock, disbelief, confused, concern, all combined into one.

First Treatment

September 21, 2017
First treatment of chemo began yesterday, a very long day. We were up at 2:00am, both unable to sleep. Loaded our little Prius car and talked about the day before.

The day before Bobbi had her port put in at the War Memorial Hospital in town. The procedure went well, no complications. Her mother and sister-in-law Debbie waited patiently with me. It was good. Her mother, Betty, has naturally been very concerned watching her daughter battle through each step. Debbie and her have kept in to touch as well. Messaging with family kept everyone updated. She has a strong team cheering her on which has helped tremendously. She decided to let friends know back in Wisconsin too. Took a bit because she didn’t want to concern people and such. When we left Wisconsin last year it was sudden and during a rough period. She had a calling to return home closer to her siblings and I was exhausted from so many hospital trips myself. Working all day in one and then having me in and out of it took its toll. It was a difficult decision because of the close relationships in town. The move put distance between her family there and here but I think she knew deep down that she had to return home. Everything happened so fast. It really helped her connecting again with her friends. I contacted a lot of her friends, letting them know about this blog, but I’m sure I missed some. If so PLEASE understand and don’t take it personal. Simply write her a note in messages. She deleted her first account when we left because there were simply too many people neither of us knew listed.

Bobbi’s port, was stitched into the left side of her chest, is where blood can be drawn and the chemo will be slowly dripped into. It was an out patient procedure. Arrived around 9:30, left about 4:00. She got along with all the nurses and doctors. It seems like once they know she spent so many years of her life in nursing that it instantly creates a bond with the same people. She doesn’t bring it up until they ask her if she understands certain things and she then shares with them why she does. There was one nurse that really upset her though. When she was checking Bobbi in she mentioned that she had worked with cancer patients in the past, and told her that her hair would soon be history, that she’d probably wake up some morning and clumps of it would be in her bed. She then added that her teeth would probably fall out eventually too. WTF? That really was a bizarre exchange that left her fighting tears. I was blown away and didn’t know what to say. All her doctors have told her that her hair might thin a little but the chemo used today, for her type of cancer, wasn’t the type used years ago. The nurse had no business telling her this. Shot her chances at a Daisy Award right in the ass.

When we got home her mom and Fred stopped by with supper, which was very nice.

We arrived in Petoskey about 7:30. Our first appointment meeting with her Doc was at 8:30 so we stopped a park a mile away from the hospital. Had a snack and walked around watching the fishermen who were out early along the shore of Lake Michigan.

When she met with her doctor (who is super nice and kind) she shared about the concerns of her hair falling out in clumps and teeth dropping out. He was shocked! He first asked jokingly about the teeth, were they bad? They didn’t appear to be. The hair he said might thin, but it shouldn’t be bad. Bobbi is ok with this. She knows the biggest battle has little to do with hair but really didn’t want to go bald and toothless.

An hour later we had a “teaching” class on the infusion treatment of chemo. A short video, a 30 minute talk with a very nice nurse, and then went to the area where treatments would began. Her medicine would be mixed up, according to her blood work the day before and takes about 90 minutes. We were taken into a nice private room, nice reclining chairs and another nice nurse talked with her the process. When the medicine arrived it would be checked by two nurses to make sure there were no mistakes. First nausea medicine was given through her IV then the first bag would take about 45 minutes with half hour flush, a wait of about a half hour and then the second medicine administered. The room was chilly so they gave her a nice blanket. When the treatment began I moved my chair next to her and started to read a book to her.”The Girl on the Train”. She got tired at different times. Her sisters messaged her and it helped keep her spirits up.

We were done about 2:30, returned to our car and took off for Upper Michigan. She was extremely tired but wanted ice cream. Which was a little strange because she never really cared for it much. Had to stop at a couple places to find it. We have dentist appointments on Drummond Island so drove to her mom’s cabin outside DeTour Village instead of Sault Ste. Marie, where home is. When we arrived she laid down on the couch and dozed off. I stayed up to watch for a fever and make sure things would go well. At about 10:00 all was good and called it a day. The first treatment was started, we now know the procedure, times, and hoping for a surgery in December.

People are concerned about my challenges with the ticker ticking. Have no worries. I don’t think about it and simply manage it with the tools learned and given. There is a lot on our plate and at times each of our challenges collide a little. No one promised life would be easy all the time. It is what it is, and you just keep putting one foot in front of the other. Bobbi is up this morning, moving about, washing clothes, humming, and full of energy. Blood sugar number high but her injected insulin and took care of that. All an all a busy couple days but the sun is shining bright this morning and a thunderstorm last night has made the air outside fresh and the ferry ride to the dentist should be refreshing.  (Click here to see our ride on the ferry)

Dentist went fine but driving back to the Soo it was a rough ride. Side-effects kicked in and made the rest of the day miserable. Is like a terrible flu. It comes on and goes, then returns with a vengeance. Twisty must have started to feel the fight and knows it’s days of running rampant are slowly coming in an end. Difficult watching the one you love go through such difficult times. Lasted throughout the evening. Kept eye on temp. Heat when chills hit, ice when the sweating struck, and mellow easy listening music on to help her fall asleep. Never in a million years did we expect this demon to knock on our door. She ended her career at work so that we’d have more time together, and caretaking working on hearts all day. To now us switching roles and my needing to be there for her, regardless of my cardiac challenge. It’s something that two people growing old together simply do. We take care of each other. We got this. The support of family and friends have been overwhelming. For this endless thanks and appreciation is given. We don’t think about her not making it through this challenging battle. She WILL. We try not to read what the internet says and odds and statistics say and listen to the doctors and professionals. Everyone is different and respond to medications and treatments different. I do believe people do follow their loved ones who lose their battles to broken heart syndrome and know this will be the case on this. We don’t dwell on the negative, have no room or energy for it. She is the kindest and strongest woman I’ve ever met, loved by many, and I truly believe we’ll have many years to come. The word cancer is scary, but a lot of research and studies have been made the last twenty years. It’s the ignorant people, like the nurse at the War Memorial Hospital who said she’d surely lose her hair AND teeth that need to rethink their knowledge and people skills. This is life though. It has its good, bad, and it’s ugly. Take advantage of the friends and family in your life and waste little time on the trivial things. Putting two socks in the washer with only one coming out in the dryer isn’t a reason to complain and moan. Our family may bend during turbulent times but we don’t break. All of us have loved ones hurting in some fashion. Take the time to call them, visit, and simply let them know they are important.

Above all else, guard your heart,
for everything you do flows from it.
Proverbs 4:23

One Day at a Time

IMG_0311
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

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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.

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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.

The Island

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August 30, 2017
Today we traveled on Ferry to see Dr. Aldridge on Drummond Island. We came down early to her Mothers cabin not far from the island. Time was spent with the family and walking the dunes of the beach. Short videos were made trying to keep a positive mind set. We knew we had to be strong. Bobbi never once complained or whined about any of this. We had a million unanswered questions and being patient was the most difficult. Hearing your wife has such a devastating type of cancer is so confusing. How far along was it? How far has it spread? What beast were we looking at?

The meeting with Dr. Aldridge was difficult. His concern showed on his face. A very kind and compassionate man. The staff at this small medical clinic seemed like family. They were in as much disbelief as we were. They knew we were battlers and if anybody could deal with this it was us they shared. We talked about what took place in Petoskey, and the CAT scan planned this Friday. While we waited for the ferry to take us back we had ice cream at a little stand close by. It was sunny and blue skied day. Everything still felt fuzzy and not really taking place. I was scared but didn’t want to show it. I knew Bobbi was but wouldn’t admit to it. She put on her armor the moment we were informed that she had cancer. I’m amazed how quickly she accepted things and how cheerful and positive she was. We knew so very little. We stayed in contact with the family and kept everyone updated. The time alone at the cabin did us good. Lots of talks and walks.

Battle Plan

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August 25, 2017
This morning seemed like I woke from a bad dream. Only it wasn’t. The hospital was only a few blocks away. I was still in a daze. When I got to her room she was sitting up, ordering breakfast. The stent was doing its job, her skin was less yellow and her eyes whiter. Both of us knew there was a battle ahead and concentrated on how we’d tackle this news. At least she felt better from having the pressure relieved inside the gallbladder. The doctor soon came into the room and cleared her for release. Her enzymes were still sky high but should soon get better. Her attitude amazes me. I shared that I had talked with the kids and that it wasn’t an easy experience. We talked about how important it was to stay in touch with them and are committed to it. When she was released the ride home back to Sault Ste. Marie took forever. An appointment was made with our family doctor on Drummond Island, and a CAT scan was ordered at the local War Memorial Hospital. An appointment was made in Grand Rapids to meet with the doctors who’d be involved with this battle. Grand Rapids is about a five hour drive from Sault Ste. Marie. It felt good to get home, though still feels like a bad dream. So much has taken place in just a few short days. Her Mother and siblings were all notified by Lori. Bobbi made a call to her Mother and shared the battle plan. The next step was the CAT scan and seeing Dr. Aldridge on Drummond Island. We’re so grateful to have him for our primary doctor.

Cancer!

August 24, 2017
An MRI was done this morning and the results were not good. The doctor later came into the room and said that his team went over the results and there is a tumor in her pancreas thats blocking her bile duct. He shared with us that his team suspected that it was cancerous. What a eye opener this news was. Hit us like a freight train. He explained that they’d put in a stent, later that day, to open up the gallbladder duct, to relieve the pressure. They would take brushings of it while performing the procedure.

The doctor was very straight to the point and immediately after hearing the news a nurse closed the curtain separating her bed from the patients bed next to her. We couldn’t believe we actually heard the news we heard. Pancreas cancer? There must be a mistake. We each shed tears and tried to make sense of all of it. This was a long way from suspected gallstones causing the problems. We were shell shocked. Her sister Lori came into the room and knew something was wrong when she seen the curtains closed around the bed. When she came in we explained what the doctor said, and I knew it was important that the two spent sometime alone. I took a walk outside in a daze. It was too much coming in at one time. You have got to be kidding me I thought. Pancreas cancer! No, it wasn’t, but yes it really was. As I walked outside the hospital the tears just flowed. I cared little who saw. I knew that she and her sister were experiencing grief and disbelief. When I walked back into the room their faces showed it. Everyone looked exhausted and spent.

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Later in the day they took her into surgery and placed a plastic stent into the area they said. The doctor took brushings from the tumor at the same time, to confirm his diagnoses. The procedure lasted about a half hour. She was sleeping when they wheeled the bed into the recovery room. I took my finger and slowly rubbed the side of her temple as she slept. Slowly she awoke and became more aware of her surroundings. The doctor came in and confirmed that the tumor was about the size of a walnut to plum in diameter. He could give no prognosis until other tests were done.

She eventually was transferred back to her room and we talked about the battle ahead. Her attitude was positive. She said that she was a battler and would kick its butt. It was important to keep a positive attitude and she and Lori tried to put on a brave face. When Lori left Bobbi and I continued to remain as positive as we could. When visiting hours ended it was back to the hotel. I called Shay and Sean and shared the terrible news. They were the most difficult calls ever made. I called my sister Charlie in Colorado as well. I couldn’t believe how everything changes in seconds. I stayed up until late in the night, looking out the motel window in a daze. Traffic and cars continued to pass on the street. The world just kept going, people going on with their lives, and we were wondering what ours now would bring. I eventually fell asleep on top of the bed, not drawing down the blankets or changing. I couldn’t imagine what was going on in her mind. She was a nurse for the last 40 years, recently retiring a year and a half ago. The last 5 years caregiving me, during my cardiac battle, and my  palliative care. It seemed so unfair. Anger, disbelief, shock, grief, all mixed into one feeling. Rage.

Gallbladder Problem?

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August 23, 2017
We got up early, packed a few things and went to the hospital. Her labs had come back from the blood work and her numbers (enzymes) were off the chart. The hospital decided that it would be best for her to be transferred to another hospital down state in lower Michigan, Petoskey. They knew there was a problem taking place in her gallbladder and thought a stent being placed in the duct would at least provide relief, while other tests would be done. I went home, packed some clothes, and met the ambulance there. Her sister Lori I contacted and she and her husband Jim were also present. Because of her unusually high enzymes a MRI was ordered. She was taken off all foods and feed through an IV. Her attitude was good but her discomfort was strong. I checked into a nearby motel because the staff at the hospital said the MRI would be done the next day. I stayed with her until visiting hours ended then drove to the motel, still thinking there was a problem taking place in her gallbladder and hoping they’d figure things out tomorrow. People have trouble with their gallbladders all the time. Sometimes they are taken out, hopefully it was nothing serious and we’d be home later in the day.

One More Night.

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August 23, 2017
Something out of the ordinary was taking place. My wife, Bobbi, and I take walks and bicycle rides frequently and the duration of them became shorter and shorter. She has diabetes 2 and numbers were bouncing all over the place. She was steadily losing weight. When her skin and eyes started to turn yellow I knew it was time we made an appointment with our doctor on Drummond Island. He quickly seen her, ordered blood work, and an ultrasound at the local hospital. The tests showed that her gallbladder duct wasn’t working right for some reason. Perhaps stones were the problem. An appointment was made to see another doctor a couple weeks away. In the mean time she started to become more and more uncomfortable. After an early evening of watching her struggle with pain and nausea I decided we shouldn’t wait for the upcoming appointment and take her into the emergency room right away. She said that she’d like to spend the evening at home, in our own bed, and go in the morning. I could understand this. Who’d be in a hurry to visit a hospital? So we waited until the morning.