The Bell

October 6, 2018

Bobbi- What a 15 month whirlwind this has been. Chemo Abraxane, Gemzar, hair loss, no eyebrows, eyelashes, completely stripped of recognition. The only control I had was to shave my head when it was literally coming out in clumps. I remember walking from the bed to the kitchen and not sure if I would make it to the nearest chair. Having to sit on the floor of the shower because of not being strong enough to stand. My first thoughts when told I had pancreatic cancer were I will not be around in 6 months, a deadly diagnosis. How I felt then I did not care if I had a time limit on life. When on the brink the human spirit seems to dig deep within to survive. There was a chance that chemo would shrink my tumor and a Whipple surgery would be possible. How can one embrace a huge surgical procedure? I questioned if this would even occur. Next scan liver spots now facing possible metastatic disease, the lifeline was shorter. At time of biopsy spots are gone. WTH . More chemo. I have literally gone through health hell. When told Chemo indefinitely I was done, no more. The day after my decision the surgeon called, said scans were reviewed and I was a candidate for surgery. How would I endure this when I could barely stand? I trained starting with baby steps. Then I was walking a mile, at times having to sit on the side of the road to make it back. I had surgery March 27th and was out of the hospital March 30th. Was I ready to leave the hospital? I put on a warriors face and said I can and will do this, though was unsure. I walked and never stopped. One month after surgery I rode a radiation bus daily for 30 trips along with chemo, with my brother Steve fighting his cancer battle. That period of time we grew even closer. His wife Debbie always with encouraging love.

After my first chemo and radiation treatment, after the surgery, was spent in a motel getting sick for 12 hours. Probably should have gone to the hospital but was seeing doctor next day anyway. I was told I would have 4 more cycles of single agent chemo after chemo radiation was complete. Finally had about an inch of hair and lost it twice so I guess three times the charm. Remember pulling at my hair on day 14 and was shocked when none fell out. Maybe I will luck out this time. By this point the once revered hair mattered little. Never thought I would be writing at this point. Didn’t expect to make it through the ordeal but am so looking forward to my final chemo. Ring the bell. I did not fight alone there are too many champions behind me. My sister Lori and husband Jim came to many appointments and comforted me more times than can be counted. Remember being at her house when I was extremely ill lying in bed together, just being sisters. Our son Sean and wife Jen, who made many trips from Wisconsin with the grandkids were a HUGE motivation. Weekly messages with positive inspiring words from Jens Mother helped. Sharing calls with Shay, our Daughter halfway across the world going to school was a blessing.

My sister Chrissy always called after each treatment meant so much. Visits with brother Mike kept me cheerful and laughing. Meeting with my mother each week, with some really deep talks kept me grounded and feeling positive. All the friends in Wausau were in my corner! The doctors, nurses, social workers, financial assistant coordinator, the nutritionist who provided me with protein drinks and vitamins. The Hope Lodge in Grand Rapids was amazing, along with Surgeon Dr. Jill Onesti. Oncologist Dr. Elena Copolla, Becky Tom NP, and Dr. Boike, Andra, Wendy, from Karmanos were true miracle workers! I would have perished without everyone’s help. When humanity seems to be at all time lows there are people out there.

And of course Mike, my husband. Whose wise words of “worry does not change outcomes” will always stick in my mind when I get too far into the future with it. He was my trainer and coach. And he always told others we were oath keepers not caretakers when the word was brought up. We battled his serious health issues for 7 years, with me doing the same. Guess we do things big at our house, cancer and heart disease. Know his endurance was limited but he made meals, shopped, laundry, shaved my head (and his own), and many sleepless nights looking over me while I slept. Drove 180 miles once a week for over a year. Called hospitals, doctors, loved me, massaged my aching muscles and bones, the list goes on.

I just know today I am here and will spend my remaining days appreciating life. It is not what you have but who you have in your lives. I certainly didn’t fight this alone.

October 11th, 2018

The day finally arrived. We were in Petoskey just a couple days ago, I was the speaker at a survivors meeting, and was unsure what to share. I knew it was a good sign to be speaking at such a meeting. It really dawned on me that I was in fact now a survivor! I still had one more treatment and it’s all I could think about! And today was the day! Lori and Jim met us there, I had the first nurse I started out with, Melissa, and in the exact same chair and room of the first chemo treatment. After the treatment it felt like a ton of weight was lifted off my shoulders. There were many hugs, and when I rang the bell joy never felt before went through my body! We celebrated by going out to a wonderful deli. It feels so good to be alive.

The ride here was stormy and windy. The ride back the same until a giant rainbow appeared the closer we got to home. It was an amazing sight. The timing of it was like an out of the body experience.

There will still be future scans and doctor appointments. No big deal. Today was a good day, no… it was a great day!

October 9th, 2018

Mike- Bobbi spoke at a survivors group today, sharing her story. Many had tears. From barely being able to walk last Christmas to the woman today is a total transformation. So many thanks to everyone! During the talk it sunk in that we were very close to the end of this journey. I was so proud of her using her story to now helping others with their journey.

October 11th, 2018

Seeing Bobbi ring the bell today, having completed all treatments, was an unexplainable feeling. What a long 15 months it’s been. Over 10,000 miles traveled and we are finally done. Lori and Jim met us at the infusion center which was extra nice. Lori presented her with beautiful flowers and the entire experience felt surreal. When we arrived home, and alone we hugged and tears rolled down both our cheeks. Her writings did an excellent job sharing what took place. Glad we have a happy ending. So very proud of her. So grateful for this new chapter. So appreciative for all who have stood by our side with compassion and love. Thank you. Thank you Karmanos!

Today I’am a survivor! To all reading this I hope this inspires you in your battles. The worse odds and statistics matter little. Fight like you’ve never have before and lean on the lives around you. Don’t worry about tomorrow, just get through the one second, minute, hour, and the day you are in.

Radiation Treatments Completed

A picture Bobbi painted of a fairy with watercolors after she lost her hair last year. It’s grown into what she imagined it to look like. 

Today Bobbi completed her 30th radiation treatment. Man, there is simply no words that can describe my admiration to this woman. From the start, the bleakest day’s, to now crossing over a milestone that’s deciding everything. It was a long-haul, 6,000 miles! And she did it with her head held high, a sense of humor, and uncompromising attitude of screw you cancer. Knowing the odds, not being sure if she would see Christmas or spring. I am thankful to family and friends to catch her when she needed it, all being proud and concerned. Her friends and family have been unbelievable from the start. The party in Wausau last year opened her eyes to all the love and support that others have for her. Kindness, having others back at times, returned ten fold to her a time she needed most. The love from direct family made her smile during the darkness days in many ways. Sean and kids visiting more, staying at hospital during Whipple, her siblings love going to chemotherapy with her, all made a difference. Nobody was sure of anything at one time.

I’ve notice small but significant things that show me her old cocoon is really shedding. We were out playing frisbee the other day and it reminded doing so before all this. Last weekend there was a big get together for her sister Lori’s birthday at their cabin in DeTour. Bobbi arranged everyone to meet a few miles away so we could drive there and surprise her. Mike, Bobbi’s brother and she escorted everyone in there on the back of Mikes motorcycle. Driving the car behind her and seeing this brought back so many memories of our days flying in the wind. Seeing her smile, hands out stretched like a bird, told me she was on a natural high. Was great seeing her and Mike leaving the way. She also had a great week with her sister Chris. After the party her mother Betty took a fall and shattered her shoulder. After just getting over a hip replacement stairs can be a bit of a challenge and proved to be. We were all very fortunate to have been there when it happened. She’s 84 years old and one tough woman! Was hard to witness.

She met other cancer patients at the hospital at 8:15 every morning. Didn’t miss a day. The drive to Petoskey proceeded. It did her a world of good to connect with others fighting this unforgiving foe. A lot of hours and miles spent bonding. She said none of then talked about cancer. Each day someone brought a snack and they plowed ahead to get treated. She made some lifetime new friends. Her doing this with her younger brother Steve has been good for both of them.So proud of her. That page is now officially turned as of today, and we have sometime to enjoy part of the summer. Her hair is returning and is so soft and pretty. Has curls in it! She looks very attractive. It so nice to see her with the sparkle returning to her eyes.

4 more months of weekly chemotherapy after a few weeks off. It’s a lot. It won’t be easy, but when has it ever? I’m starting to see news signs of change and it’s beautiful. The 4 months going to Karmanos and she will be ringing the bell hanging on the wall there. Surrounded with the many who work there, and get treatment there. Their like family now. Always with a kind smile and words. They share pictures of their kinds and humor is always present. There are very serious moments of course, it is a hospital, but it’s like Norm walking into Cheers. Everyone is happy to see her. I stay back in the woodwork and just watch. Taking everything in.

It was time for a positive post. Cancer is terrible. It’s so far from being black in white. A lot of blurred lines. Yet you push on, knowing some days will suck. I often didn’t know what to say. Simply get her pillow, and the blanket Cinneidi made her and cuddle, knowing it would bring needed sleep to her. Often not saying anything. It’s great being able to gentle rub her hair again and knowing she’s sleeping.

A page has been turned. Eyes are wide open to life. We may never know if she is officially cancer free, doctors are hesitant to declare those words, but she is definitely a survivor. Yesterday is over for all of us! Be it good, bad, or just a lot of work. Now passed. Today is new. People often wonder if they’ll get through something. They can. Maybe not in leaps and bounds, sometimes you have to crawl through it, but you can. There are many distractions each day that try to rob and blind you from the good. We push ourselves, are hard on ourselves. We jump from one project to another. Which is good to a certain point. Just don’t let the years add up wishing for things you already have.

A Challenging Time

The last month of daily radiation and weekly chemotherapy has really taken a toll on Bobbi. A thousand miles a week where each day becomes longer and more draining. There isn’t a whole lot of joy taking place. This is really whipping her out. She calls it a night about 7:30 and begins the same preparations in the morning. She hasn’t had a decent night sleep since the surgery, getting up 3 to 4 times throughout for the bathroom.

It’s tough as hell to watch. She puts on a brave face and cheerful persona with others but I see the toll it’s taking. She shares with me how difficult this experience is. Will be so glad when September approaches. Our life consists of hospitals, doctors, pharmacies, needles, and highway signs. It’s hard trying to keep her spirits up when I’m angry having the one I love struggling. We thought after the Whipple we’d be done with the degree of hardship, but there just doesn’t seem to be an end to them. Bobbi has always done things at 100mph, and gets frustrated with herself after growing tired 5 minutes into a chore. Going on a year soon, and hopefully will turn the page on this chapter. Now mouth sores are developing. Recently had lab work done so hopefully they look alright.

Nobody promised life would be easy and fair, all of us have our mountains to climb. But damn! This is a tough cancer. She’s beating it but it’s taking everything she’s got and then some. Haven’t written in awhile, just going through the motions of living life. Thankful for family and friends love and support. We do find time to laugh and love, but there is an underlying struggle taking place that words really can’t describe. Nights of staying up thinking in the dark, where it’s quiet and calm, I try to make sense of things. Just have to keep pushing ahead. One more day, one more treatment, one more doctor.

Not really sure what to write. Numb from everything. I want her to get better so badly. Days of yesterday’s seem so far away. Having to learn how to live life at the moment is important. You really can’t get too far ahead with plans because we don’t know how she’ll be feeling when something is.

May 18th, 2018

Bobbi – Friday morning and it’s 5:00am, been up 2 hours already. Gotta love the pre-chemo steroid effect. Riding the radiation van has been interesting. The War Memorial Hospital here has a volunteer program where different drivers take people here from the Soo down to Petoskey for radiation. My younger brother Steve is receiving radiation too so the van makes a quick stop near Pickford to pick him up. Certainly feels surreal. We were born on the same day, three years a part, and now each are challenged with cancer.

Wednesday we had a quick ride to Petoskey, all green lights. Got to the hospital and when the elevator doors opened five of us had a quick stride so we could return sooner. I almost chuckled out loud… cancer peeps are a strange breed are we really jogging to get radiated? Thursday is chemo day as well. You know when they wear thick gloves, gowns, and mask and your IV infusion comes in a biohazard bag they’re not exactly sprinkling you with fairy dust. Will get a break from both for 2 weeks then it’ll be the home stretch. 4 additional months of chemo and done, at least that’s the plan. I really don’t know how much longer I can keep doing this if plans change.

May 30, 2018

These times seems endless. Each day that goes by is taking its toll. Just have to get through it I keep telling myself. Both of us keep battling. He rarely mentions his heart issues, is a good bluffer, but takes all of it in stride. Our primary family doctor is moving so we’ll be looking for another at the end of June. The third one since we’ve been up here. Really like the Doctor we have but she is moving to Grand Rapids.

Cancer has literally taken me to the doorstep of death. The great robbery, hair, body and often times strength. At one point I was so ill my breath was cold, my body emaciated. Yet somewhere in the depths of illness is a courage to forge forward. I refuse to surrender, a smile is contagious. Try it, it costs nothing. 10 more radiation treatments to go 20 completed. 5 of 6 chemo treatments done this cycle, for a total of 17 since last year. 28 total sessions by the time things are supposedly finished. Certainly feeling the effects. Successful Whipple surgery didn’t come free of side-effects. Up every morning at 3:00am using the restroom for the next 4 hours. Trying to tweak pancreatic enzymes, diet and still learning what’s tolerable. Sure didn’t sign up for this but we play the deck we are dealt. Days are long and challenging. Mike said give yourself permission to rest, I know he is right but it is foreign.

At least the weather is nice and my flowers are coming to life. Haven’t had much time to enjoy them but it’s pleasant when we sit out and relax. Just feeling so tired and whipped out all the time. Looking forward to seeing the kids this summer. Gotta keep on keeping on! Tomorrow is a chemo day so up early and on the road.

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 –