Tattoo

Thought it was time to update family and friends on the next set of plans in Bobbi’s battle. On April 25 we met with her oncologist Dr. C, and in Petoskey, at Karmanos. She was surprised to see her doing so well after the Whipple procedure close to 4 weeks ago. It was nice visiting with the team of nurses, social worker, all who’ve become friends. Bobbi was her positive and cheerful self. We anxiously waited to see what was coming next.

It was decided that it’d be best for her to undergo 6 weeks of daily radiation and chemotherapy once a a week, then 4 months of additional chemo to follow. We spent the night in Petoskey because we had to meet with the radiology professionals early in the morning. Karmanos is an amazing place to have this done. The social worker there presented us with a voucher for a hotel stay that night.

When we met with her radiology doctor he explained the process. Bobbi drank contrast dye, had a CAT scan, and the areas where it was to be administered was tattooed with three separate dots. One on each side of her midsection and one in the center. Appointments were set up to start this coming Thursday.

Twisty, the tumor in her pancreas was destroyed. But it was adhered to her portal vein. Cancer cells left on the portal vein was confirmed by pathology, which is why they are going to aggressively continue treatments.

Bobbi – “Appointments back to back. Wed met with Dr. Coppola to map out my future chemo. 6 weeks radiation with reduced strength Gemzar 1 week x3 then week off with radiation mon-fri. Then 4 cycles gemzar full strength. Well so much for an optimistic 2 months chemo, but now it’ll take us to probably Labor Day. When does it flipping end? Where does the human spirit find the energy to keep going? The well is pretty damn deep and if I hollered down it an echo would surely sound. Thursday I met my radiation oncologist, very nice doctor. Kind and thorough, making sure our concerns were addressed. Pretty sure he is about Sean’s age or younger. After meeting was given contrast dye to drink and IV access for more contrast then off to CT to get my dot tattoos marking the spots for radiation. Hmmm a permanent reminder of my cancer journey, like I needed anything in permanent ink to remind me that I have cancer. I had to bite my lip! They stung!

The next six weeks ought to be interesting. We’ll be riding the Road to Recovery bus, a program the War Memorial Hospital has here in the Soo, with others getting radiation. It leaves each morning and arrives back later in the afternoon.

Mike shared with me a good insight in looking at all this coming up, because it’s discouraging to now have to endure the upcoming daily radiation, and months more of chemo. It’s depressing. He compared the start of this new journey as the last one. When there is a major storm you look at outside and still the destruction taking place and question how in the heck your going to survive it, rebuild, endure. You wonder where your going to find the energy and positive attitude it’s going to take to get through it. Yet, when you venture out after, take things one day at a time, things slowly look better. Not at once, not without hardship, but you survive. Going into the first rounds of chemo, the Whipple, felt like this. There were many WTF moments! It’s taking awhile for my digestive system to heal. I’m on a medication named Creon to help the pancreas break down food better. What type of foods that can be handled is still a hit or miss type of thing.

Thought after the Whipple there’d be less of a battle. Doctor C said she wasn’t going to BS me in saying this would be easy. And we know it won’t. Yet I know I’m going to beat this. Didn’t know how or when in the beginning, but we did. Don’t know how or when we will now, but know we will! It just gets so exhausting digging deep and finding the energy it takes to fight this cancer. We talk a lot, he gives me pep talks when down. I know it’s been difficult on him emotionally and physically but he keeps on going and is the glue of this crazy experience. Everyone’s support and love has played an important part. I’m glad he stayed on me about trying to write what feelings are taking place. It’s helped a lot. Doing good and have to remember we’re only 4 weeks out of surgery. Today was spent digging in my garden and getting hands dirty. A place where I forget about what’s taking place. Wasn’t sure if there’d be a garden this year some months back! Onward we go, Thursday chemo and first radiation treatment. Adds up to about 7500 miles of traveling the next 5 months. Glad it’s not winter!

While we drove to see brother Steve on Sunday we seen hundreds of Sand Hill Crane birds in a farmers field. It was amazing. When different wildlife cross our path I often look up the message to see what they symbolize. This is what was written – “Here in the center of the storm you can see the vortex surrounding you, the vortex is the field of your unharnessed emotions, fears, pain and stored trauma where you can feel lost and overwhelmed and not know how to find your way out.  At the core of all storms is the eye, it is where you see the light has broken through the clouds, this is where the calm waters give safety.  It is here that you have perfect clarity and can see the overriding power of your emotions surrounding you.”

Kind of feels this way right now. A few months off chemo has brought a lot of clarity to everything. After all this the butterfly will soar!”

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 –

Home

We returned home on the Monday evening, after 2 weeks in Grand Rapids, Michigan. Bobbi is healing excellently. The Whipple procedure went very well. Having Sean here has been a big help! The stay at the Hope Lodge, which we’ll be featuring in the next post was amazing.

We met with her surgeon before returning home and she explained what the results of all the pathology were. Here pancreatic tumor was beaten down to the size of a grape from the intense chemotherapy regiment, and removed. It once was the size of a walnut. 29 lymph nodes were taken out, all negative for cancer cells.

The tumor was stuck to her portal vein so there are a couple of cancer cells still adhered to it. Bobbi will now undergo 2-3 more months of chemotherapy, in addition to 5 weeks of daily radiation to whip these out. This will take place 4 to 6 weeks from now. The procedures will take place in Petoskey again. Her surgeon is an amazing doctor and she called Bobbi her “Rockstar”.

Intake of food is a hit and miss type of experience. Some cause nausea and doesn’t stay down, but considering the type of operation this isn’t unusual the surgeon said. It’ll be awhile before things settle. Her diabetes has improved since the operation. On Sunday we visited with her sister Chrissy and her husband Jeff. It was a well needed visit! It was nice to get away and enjoy their company. We also had an opportunity to visit with her niece and her kids! It was a cheerful time. When Bobbi became tired we returned to the Lodge and went to bed early.

We are feeling optimistic about everything. Today I went shopping for nutritional soft foods, supplements, and called her cancer team in Petoskey. Her appointment there will be on April 25th. Will be a consultation visit and to set up appointments for the future.

When we got home cards from friends filled the mailbox! Thank you! She is doing well, sleeping right now, but we’re slowly getting back into the groove of things. I can’t express enough how helpful it’s been to have Sean here! There were a lot of positive things that took place and having him here with us has definitely been one! Steve, Bobbi’s brother, also underwent major surgery for cancer a couple days after hers and is home now too. What a couple weeks of unsteady waters.

We are feeling very grateful for everything and everybody. The next couple of months will be challenging but it is what it is. Got to roll with the great news, think positive, get rest, and take on the next pitch. Told her we’ll be home soon and that’s where we are now! Home!

Surgery Today

Went to hospital for Bobbi to register at 7:30. Sean came with us. Jim, lori, Jeff and Chrissy soon arrived. At 8:30 they took her back to prep then allowed us to visit with her for an hour. Bobbi was cheerful and hiding her real emotions behind humor.

We’d look at each other and had a hard time not tearing up at the same time. Monitors were hooked up, wires, things I had no idea what they were. As she visited I simply rubbed the side of her head where new hair was starting. We spoke the same language to each other with our eyes. I remained quiet, taking in everything that was going on. Wanted her to spend the time with her family and son. The surgeon came in and explained what was going to take place, said a prayer around the bed. I was as at a loss for words. The journey has been hell and she has fault so hard to live and never balked this entire time with countless trips of chemo and pre-operative instructions. She truly is a warrior. The week leading up to this was difficult. Having the kids visit helped a lot. Now everything is resting on text messages that the surgical room is sending letting me know what’s going on.

The first text said the surgery begin at 11:18. The first thing the surgeon is doing is checking her liver out to doubly make sure there are no tumors. Then the procedure will take place.

Second text at 12:11 said no spots on liver. Surgery is continued.

I’m in the hospital chapel as I write this. The next thing I knew 5 or 6 people came in and a service began. Lasted about 20 minutes. Didn’t know when to stand, sit, kneel, or what to say back as it seemed everyone said the same thing by memory at certain times. Respectfully tried to do the same. With Easter this Sunday I think it was in relation to it. Pastor talked about Judas.

All of this feels surreal right now. My every thought is on Bobbi and flashbacks of simpler times. I’m so fortunate to have our paths cross 25 years ago. This experience has brought us closer in a million ways. About 80 minutes have passed and still quite a long wait to go.

Going to get something to eat now, meet back up with everyone. Know many are praying for her and in their thoughts. Many well wishes received this morning. A very touching one was sent by her nephew Cole. It meant a great deal to both of us.

5:51pm – Surgery is done. A complete success. All areas around were clean. Portal vein area inflamed. No ICU unit. Will be up and talking in 2 hours. Will be taking it easy today with rest, tomorrow walking. Good 3 to 4 days with drains. Everything that had to go right went right. Thank God. Twisty is gone. 100% successful! Not out of the woods yet but certainly see the trail and sunlight. Back in the chapel giving thanks. Thank you to everyone. When the going got tough you helped her in ways no others could!

Update March 28, 2018

Doing better than expected. Numbers all look good. No complications. Walking a lot, trying to do everything herself with no help but you know how she is! Miss. determination woman. Watching her sleep today was nice. She had a calm look that I haven’t seen in a long time. Family was here visiting and a good friend she grew up with. So glad Twisty had its ass kicked and out of there. Will continue to update this post with news. Thank you for the love and messages here on and on Facebook. She’ll have a few more months of chemotherapy when healed. Not sure what cocktail blend or type, all that will be decided later I’m sure.

March 31, 2018,

Sean and I went to the hospital yesterday morning and quickly learned that she was cleared to leave! Unbelievable. 70 some hours after surgery and she walks out the door. Last night she walked the hallways here at the Lodge and watched CD movies available from their large selection in a study room.

About 5:00am I woke to find her out of bed and sitting in the recliner. Asked her how long she’d been up and she said only a few minutes! Somehow or another I just knew she wasn’t in bed.

Today her sister Chrissy visited and spent some good quality time together. Sean went to Meijers food market and stocked up with soft foods. Bobbi also decided to tackle 3 sets of stairs! I was like….WTF? Seriously? It felt so good to sleep together. We have nothing planned for the next week. We leave Grand Rapids in 9 days after seeing her surgeon for follow up visit. Things are going very well. She is getting up and down like nothing took place.

 

Time to Battle!

 The last 5 months everyone stopped worrying about the original pancreas tumor and concentrated on the liver spots that developed over the same period of time. Three out five doctors said they “felt” and “believed” that her cancer had turned metastatic, though couldn’t be sure. Spots were too small for biopsy. They were going on the facts that were present and small because they were responding to the 13 chemotherapy treatments. Just last week they told her she’d be on chemo rest of her life.

Out of the blue the phone rang today from her surgeon in Grand Rapids, said the whipple was back on the table. We really have no idea whats going on. Five months of going back and forth, surgery on, surgery off, to surgery now back on has left us grabbing at straws. The surgeon said that she would first have to go 4 to 5 weeks without chemo in order to handle the surgery. What???

What a rollercoaster. The surgery is no guarantee that the cancer won’t spread (if it hasn’t already…why the sudden liver spots that responded to treatments?). Its a major surgery. Does she endure this only to learn it already had spread? Why the sudden change of now the surgery being on the table? because the liver spots shrunk, which they are suppose to do while on chemo? Does this mean it stopped from spreading? All questions the best minds in the field have no exact answers for. But what the heck, do the surgery and shake the dice and make a bet on the odds? Which aren’t that good to start with. When do you look at quality of life over quantity? The chemo has her barely able to walk, the whipple has a high rate of the cancer recurring anyways, but then with new complications from that.

Simply not sure what to think of at this time. Which is bullshit considering it was last fall she was diagnosed. They say there is a gray area with cancer, its not black and white. Well there sure is a black and white picture between life and death. Is there too many chefs stirring the soup? We’ve put on over 10,000 miles trying to get answers that all come back with yes, she has pancreatic cancer, but unsure about everything else because the chemotherapy is doing its job at keeping the other spots in an unsure picture. We’re going to talk with family an go from there.

Late Tuesday night – After spending the last 8 hours talking, going over every possible scenario we’ve come to a decision. It’s time to bring the fight to the cancer while this little door is open. There is a little light at the end of the tunnel and we can’t spend our time worrying about it now caving in! We’ve gone this far to quit now. Yes, we’re filled with diagnosis that the professionals may or may not have given the most accurate information. Lived with the unknown for months, traveled many miles, but it’s time now to swing for the fence and get Twisty the hell out of there. If the CT scan looks good in 4 weeks Bobbi is going to go through with the surgery. The evening was spent looking over every paperwork timeline and statistics. Some good, some not so good. Maybe it’s spread, maybe it hasn’t. No one is for sure but the window of opportunity has cracked open a millimeter and we’re going to give it everything we got to bring the fight to this monster. It’s a huge surgery. Pictures on the Internet look like people have been cut in half and restitched. Possibilities of complications many. Past friends haven’t faired to well after the same procedures. Her past medical surgeries in her abdominal will make it more risky. Her diabetes the same.

The alternative is chemotherapy for life, until the disease overpowers it. But you know what? We knew this would be a real fight and fighters we are. It took a bit to layout the facts and encouragement. A pep talk of facts and how I know how strong her spirit is. But it is ON! Would have been so easy to say to heck with it, it’s going to win eventually so why fight so hard. But that’s not who we are. Are we scared and apprehensive? Hell yes! But you get no where in life sitting back and waiting for things to come to you. Singing the blues is okay too…for awhile. But it’s time to suit up, put the biggest bat in our hands, and stomp this demon into dust. We trust the surgeon. She’s performed over 80 of the operations. The hospital is one of the best. If she and her team feels like they can do this, and it’s the best chance at extending her life, with quality, then it will be. I want to see her walk the beach with her sisters, laugh and love her son and Jen. To see her daughter Shay continue to rock this world with her adventures!Sit around campfires with her brothers and plant flowers with her mother. Spend time with friends, love and embrace her grandchildren. If this is the only opportunity we have to see these things happen then it’s time to battle. The next few weeks these writing will go silent. I personally have to help get my wife physically and emotionally ready for this fight. As far as past liver spots, what some doctors shared in what they “think” it may be, there was also a lot going on at the time with her bile duct stent becoming dislodged, 300 count blood sugar numbers, that may have inflamed things. Maybe the spots went down because her family doctor finally got her blood sugars into normal ranges. All we know is that the window of opportunity may not remain open for that long. There is a lot of fight in this woman, like I’ve never seen in another female or male. I’m going to be by her side every second, every minute. I’m ready for this. She’s ready for this. It’s now time to prepare, exercise, and get her in the best condition she can be in. Thank you again for all the support and love shown by many throughout all of it. We got this! Surgery is tentatively scheduled for March 27th. Will keep everyone updated throughout it.

Bobbi – The word cancer has a way of consuming thoughts. How does one position these thoughts? The brain is a remarkable thing when compartmentalizing of information.

When do you take control of cancer? Is there such a thing? Control is taken when it is not the first thing you think of in the morning nor your last thought at night. Inner strength where the hell does one get this? There are empowering moments on the cancer ride. Sometimes we make decisions and take control when we have no idea it’s being done. From personal experience, I just knew what made me feel stronger. Hair clippers in hand when my thick long hair was circling the drain. Only a couple of tears were shed with the first swipe of the clippers blade. I trusted my husband to shave an even bald look. Better yet we were going bald as a couple. My husband Mike was shaving his head too. Tried talking him out of it but no chance. It was my way of not letting cancer take the of my last hair. If it’s going I’m taking it myself.

Chemo with Abraxane and Gemzar weekly infusion 3 weeks on one week off. Hate the infusions but love the people. The nurses at Karmonos in Petoskey are wonderful. Know what to expect. A couple of good days after steroid and chemo then the crash. I feel myself weaker with each infusion. Neuropathy in hands and feet. It’s like trying to pick up a quarter with an oven mitt. My feet feel like dog paws, under the toes it feels like swollen pads.

I refuse to nap… if cancer is going to take me come and get me awake coward. My journey has not been normal, or maybe it has? Was told I had Mets by three different doctors, that chemo would be indefinitely. Told that surgery wasn’t an option. I then positioned my thinking to this is my fate, questioning how I’ll do chemo indefinitly. It literally sucks the life out of me. At what point do I concede and quit treatments? I knew it was getting close to this decision last CT done. When I’m feeling the weakest (after the 13th treatment) suddenly out of the blue the surgeon calls and says the whipple surgery is back on. How do I pull this one from the depths of my mind? I had to find the strength somewhere.

I put my boots on and walked around the parking lot, down the street and up and down stairs for the next 4 weeks. Gradually it went from 100 feet to 200. Then 30 steps to 300. My hair was returning and my attitude improving. They were telling me I had a chance to live longer than a couple of months. I was preparing myself for the upcoming battle.”

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

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.

Screw You Cancer

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Bobbi was holding onto my side as our old motorcycle was flying down a hill. I asked her about stopping for breakfast and then realized I was dreaming. It was 2:00am in the morning, she had her arm around me, wide awake. It sure felt real. I rolled over and asked why she was awake, told her my dream, and before I knew it we were sitting in our living room having coffee. Her 6th Chemo was yesterday and we traveled through two snowstorms on the journey south and coming back. Roads were icy and winds gusts of 35mph were reported. We knew that snow was expected, the TV announced winter storm warnings for the last two days. Had to make the trip though. Roads were terrible but Twisty has got to go. The treatment went as expected and the cocktail absorbed. We now wait until a scan in two weeks to see if she can have the surgery performed. The scan was planned for Monday but the powers to be want to see the full impact of todays treatment. If the tumor in her pancreas shrunk then surgery will be about 30 days from today. We’re hoping so. How screwed up is this? Hoping to undergo a Whipple procedure. WTF. But it is what it is and messed up choosing this fighter to mess with. She is determined to kick its butt no matter what.

So here we sat, up at 2:00. Years back it was our bedtime! Bobbi, out of no where brought out the hair clippers and said let’s do this. A half hour later we each had bald heads. Screw you cancer! You will not have the power today, not EVER. We may look like a couple of eggs to others, but have a battle at hand and will not give it the upper hand. Period.

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Bobbi’s friends and family, people she never met, are amazing. A once lonely struggle has evolved into one where many have lit their candles, said their prayers, and are sharing their love.

She shared the photos with friends on Facybook, and tweeted them out on our 100,000+ strong Twitter account (see here) She looks and is beautiful. Hair, no hair, matters little at this time. A simple haircut empowered her and wasn’t emotional in any way. We are talking life and death and the later is unacceptable.

I don’t know when a full nights sleep will return. I want so badly to swing my fists at this terrible disease. Beat it to a pulp and then take the boots to it. I stopped the wondering of why and not possible. We are not going to back down and feel pity. Many are climbing their mountains and life isn’t easy for any of us. Life certainly isn’t for the weak. If so it’ll run over you and bring you down. When push comes to shove everyone has the power to give it their best shot. Amazing things can happen when you believe and take a no prisoners attitude. It may start out by knocking you out, and down, attempt to strip you of your dignity and faith, but you slowly get back up, even if you can’t see straight and unsure if you can stand, and fight. May lose a few battles, but will win this war. May bend in the wind but not breaking. Screw you cancer. Not today.

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.

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.

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.

Grand Rapids

IMG_2005September 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.

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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.