Family & Friends,

It is a little over a year since I was admitted into Baptist East after my primary care doctor was at a loss as to why my white blood cell count was through the roof. I had been put through a battery of tests and he could not pinpoint the exact issue. After a battery of different tests, he thought it would be best if he admitted me into the hospital where I could see three specialists to hopefully determine the issue. The three days that followed, I was seen by a urologist, an infectious disease doctor, and a hematologist/oncologist.

After 3 days, countless vials of blood, and a hole drilled into my hip, I was told that it looked like some form of chronic Leukemia and I would need to see the oncologist at the Montgomery Cancer Center.  

My mom immediately flew down from Syracuse to be with us and she attended my appointment at the cancer center with us. I will never forget the feeling I had while standing at the counter and registering at the cancer center. I was full of fear, anger, and loneliness.  When the doctors at the Cancer center confirmed that I had a form of Leukemia, but were unable to read the bone marrow biopsy to determine exactly what the issue was, we were presented with the opportunity to go to one of the best hospitals in the world, Massachusetts General Hospital (MGH) in Boston.  My sister in law and a high school friend were able to get me into the oncology clinic immediately.

We flew to Boston and met with Dr. Rupa Narayan, my oncologist. Sara and I both fell in love with her, she was wonderful, kind, brilliant, and extremely patient. After several more vials of blood and another hole drilled in my hip, they determined that I had two different types of Leukemia:  MDS & MPN.  This is referred to as atypical CML. Dr. Narayan spent hours with Sara, my sister-in-law, and I to explain everything in detail as to what we could expect and exactly what the disease was all about. When asked about survival rate, I was told that the life expectancy was 12-18 months. She let me know that the statistics included people much older and not in as good of shape. 

Because of the seriousness of the diagnosis, she encouraged us to look for a facility closer to home. The original plan was chemotherapy 5 days on and 15 days off for 4-6 months. This plan quickly changed after the doctors at multiple Boston hospitals looked at my records and determined that it was best to go directly to a complete stem cell transplant. The search for a donor was kicked off immediately and all my siblings quickly submitted their tests to determine if they were a match. There was a 25% chance that one of my siblings would be a match.  

Sara and I decided to visit the Kirkland clinic in UAB Birmingham and the Winship Cancer Clinic at Emory in Atlanta. We followed up the Atlanta visit with a return to Boston to meet with the transplant team at MGH. After meeting with Dr. Defilipp of MGH it became apparent to us that MGH would be the place for us. This meeting was extremely emotional because we also found out that my brother Vinnie was a 100% match and he would be the perfect donor! From this meeting, we knew that we wanted to be in this battle with Dr. Zach and his team.

The next several weeks were a blur of activity, medical test after test to see if I could handle the transplant, logistics of being in Boston for 6-7 months, Blood tests at Walmart, Medication after medication, and preparing to be gone from home…...

MGH was awesome on every level. The nurses were all incredibly wonderful and were extremely helpful as I went through a barrage of tests. The social worker helped us in a multitude of different ways. We were given 6 flight vouchers from Atlanta to Boston, literature for our granddaughters, so they would understand what was happening, and complete support of the process that was about to take place.

Logistics took care of itself, with a huge assist from our families. Sara and I were able to find a two-bedroom furnished apartment less than 400 yards from the hospital in Beacon Hill. It was the perfect place for family and friends to stay while visiting Boston and for me to stay when released from the Cancer facility. The cost was pretty astronomical, and it really wasn’t feasible for Sara and me to do this on our own, so we asked for help from our families and we were immediately provided with the promise to help financially with the apartment. It was a huge burden lifted when we knew that this was all in place. This was in early June, so we were able to celebrate Sara’s birthday in Boston where we had 20 family members show up to eat pizza and sing! Trisha, Neil, and the girls were able to come up and It was a great event.

We returned home to Montgomery and began to prepare for the coming months. Our dear friends (family) the Vinson’s hosted a going away (#KickCancersAss) party where I was able to spend time with my closest friends and family. It was a stupendous occasion! My friends from Rebar Performance held a workout in my honor and sold T-Shirts to help support us. My parents were able to attend, and we watched a gym full of people give their all to support us.  This was followed by a lunch at Sweet Creek in which they donated a percentage of all proceeds to Sara and me to help us through the next six months!  We were completely overwhelmed by the outpouring of love and support. Vyana Yoga studio, in Syracuse, where my sister is an instructor, did a fundraiser for us too. Sara was able to attend it with both of our families and friends! Again we were completely overwhelmed by the outpouring of love and support. From May – Dec, our friend, Jason, took care of my lawn, and our neighbor, Becky, took care of our dogs while Sara was at work and when she was in Boston, Becky helped our dog sitters too.

Massachusetts General Hospital

I entered the hospital in early July and met my Transplant nurse, Keri Chen, for the first time. She was amazing! We all fell in love with her, her smile, her wit, her professionalism, everything! She was amazing throughout the entire process. She was the first person I met, and she was the last person with me when I was discharged to Hope Lodge. (She came in on her day off to be there when I was discharged)

I started what my doctor called “Big Boy” chemotherapy a few short hours after getting a bed.  I was told that going through the chemo would not be bad at all, the effects would hit me a few days after I was off. My second night in the hospital was absolutely the first time I thought that there was no way I could do this. I started to get sick and when everyone had left for the evening, I became truly frightened for the first time. Whether it was self-pity, fear, anger, I am not certain. I do remember thinking that there is no way I can do this for another 30 days!

My stay in the hospital was a complete blur to me. What I do know is that my mom, dad, sisters, brother, wife, daughter, son-in-law, and sister-in-law were there every possible moment.  (I spent a total of almost 7 months in Boston and there was one single evening that I did not have a family member with me.)  After going through chemo, I was given a day off before the actual transplant. Eating and drinking became a chore. My immune system was completely destroyed, and my counts were down to nothing.

17 July I was given the new stem cells. This was quite an anticlimactic event. Basically, my brother donated the cells and they were put into a blood bag. They brought the cells up in a mini cooler and hung them up on the pole that had become my constant companion! Prior to beginning, we had a blessing of the cells done. It was amazing! Most of my immediate family was in the room to witness the event. The cells were gradually put into my body and the “Fun” began.

I am not 100% certain of anything that happened from that day until discharge. It remains a complete blur. I know that I had blacked out for a 2-3-day period, where I have no recollection of anything that went on. From what I am told, it’s probably better that I do not remember. I do remember being sick, trying to walk the halls, trying to work, trying to eat. I remember the sores in my mouth were extremely painful and the intermittent vomiting did not help. I remember my nurses, seemingly bending over backwards to make me comfortable. As the days passed, it was a momentous occasion every morning when the blood counts arrived, and they posted them on the wall in my room. I was able to see my new immune system kick into gear.

It was during this time that the hair I had left began to leave me. One of my nurses came in late one evening and shaved my head for me because it was irritating. I had shaved my head prior to being admitted and the new stubble was falling out constantly. Eating was not any easier at this point, but I was introduced to the Lunder 10 Frapp. This was 1000 calorie milk-shake and it was a piece of heaven. I loved them and they loved that I was drinking them. I had spent about a week getting fed through my veins and could come off that when I was able to start drinking fraps on a regular basis. My counts continued to improve, and I was able to be discharged and sent to Hope Lodge until I was at 100 days post-transplant.

HOPE LODGE until Day 100

Hope Lodge became my home for the next several months. Hope Lodge is a cancer facility for patients that live outside of the local area. It provides complete living facilities for cancer patients still being seen regularly at one of the three local cancer hospitals. I was less than thrilled about going there, but I soon found out that it was the best place in the world for me. There were anywhere from 20-40 cancer patients that were staying there at a single time. I met several people there that became an inspiration to me and my family. I was able to get visitors pretty much all of the time and I had someone stay with me for the duration. 

Unfortunately, it was not all unicorns and fairy dust. I woke up one morning and was extremely ill again. We called the doctors and they wanted to see me immediately. I was re-admitted to Lunder 10 at MGH. My nurses were all a bit shocked to see me back there, and they continued to provide the best care possible. I was put through a series of tests and I quickly improved. After 3-4 days I could return to Hope Lodge. My family was taking turns as the caregiver at Hope Lodge so I spent time with all of them. I had visitors show up from Atlanta, Syracuse, Portsmouth, Montgomery, and even Belgium! For the first month all I ate was Ramen noodles and macaroni and cheese. Gradually my taste began to come back.

I was still going back and forth to MGH 2-3 times a week to see the doctors and give blood. Dr. Zack and Meredith were incredible. They did everything to ensure my success. Insurance issues, prescriptions, even aquarium passes, they did it all! (Meredith even let me go to Wegmans on my birthday with Trisha!)

I still could not go out in public at all nor be around anyone remotely sick. The next weeks were filled with a great deal of joy. I made fast friends at Hope Lodge. I participated in cook-outs, art projects, puzzle after puzzle, birthday celebrations, and graduation ceremonies. I spent quality time with my sisters, brother, son-in-law, daughter, parents, niece, nephew, and most importantly my wonderful wife.

BEACON HILL

I went to my own Hope Lodge graduation ceremony with my newest best friend, Lori, and prepared to leave the lodge with mixed emotions. It was a safe place for me, and I began to love everything about it. I was now being released into the wild! The best part was that after day 100, I was able to see and hold my grandbabies again!! Day 100 became a celebration at the Boston airport where we reunited after several months. We all spent the next few days touring Boston as best we could. I was not allowed to go many places, but I could take them to a Bruins game and sit on the glass as well as a duck boat tour. Both the girls were thrilled that they were able to drive the boat! We also celebrated Halloween and were able to Trick or Treat at Beacon Hill and it was amazing!

I spent the final months in the apartment with my mom and dad. It was awesome! We laughed we cried,  we did puzzles, we talked, we watched baking shows, we cheered against Tom Brady and the patriots. The time with my parents was so extremely special.

My sister Debbie was huge throughout all of this as well. When her flight was cancelled due to weather, she drove to Boston, from Syracuse. She cooked; she monitored the recycling, she made certain that everyone washed their hands. I was able to spend a lot of time with her as well. She and her family were huge in helping us get through this.

As Christmas approached, I knew that my release date was coming. The plan all along was to stay in Boston until the doctors felt it was safe for me to go back to Alabama. My care was to be transferred to the Winship Cancer Clinic at Emory Hospital in Atlanta. Dr. Zack had been a fellow at Emory and had a relationship with Dr. Amelia Langston. 

The day before I was set to leave Boston, I had an appointment and they found out that my immune system was attacking my liver. This is called GVHD (Graft Versus Host Disease). MGH got on the phone with Emory and they decided that I would need to be seen in Atlanta the following week. My parents packed up the apartment and began driving back to Montgomery while Sara and I flew out the next day. We spent our last few nights in Boston having a wonderful Italian dinner with Sara’s cousins and my nurse. Leaving Boston, I was full of fear and at the same time excited to be going back home. It was great knowing that the best hospital in the world was 400 yards from your door should anything go wrong.

BACK HOME

With a backpack full of prescription drugs, mask on my face, Sara and I flew into Atlanta and drove to Montgomery. This was an interesting ride for me, because I can honestly say that I was not sure I was ever going to make this trip. We drove directly to the Osuch home where I was able to hold, hug & kiss my daughter, son-in-law, and grandbabies. It was the sweetest of reunions! We then headed to the house where I was nervous over whether or not my dogs would remember me. As we pulled through the gates to the community, I say a sign with an Orange balloon welcoming me home. It was such a sweet gesture. 50 feet later was another balloon and sign, and another and another! It was very emotional for me. Next, we turned into the pod we live in and the streets were outlined with people holding signs and balloons.  I could not believe it. It was a cold rainy December afternoon and they were several friends standing out in the rain to welcome me home. I will never forget the feelings of that day. As we approached our home there was a huge bouquet of orange balloons with a huge welcome home banner. My neighbors and most of my closest friends all standing there with signs and balloons. Wow, just WOW!

My puppies were glad to see me, not as great a reunion as I had pictured in my head, but nonetheless at least I did not get bitten!  For the entire period of time that  I was in Boston, my amazing neighbor, Becky Brown, took care of our dogs and let them out during the day while Sara was at work. She also helped all of our dog sitters too when Sara was in Boston. 

With the help of her father, Sara had taken it upon herself to do a bit of renovation of the house while I was gone, and I was in total shock when I saw it. The “reveal” was nothing short of magnificent. She was able to maintain a household, work a job, be a caregiver, and remodel a home! She is the rock in this relationship. Her faith was never shaken. When I was at my worst she was at her best. In addition to her father, several friends, Dee & Darrell, Layla & Lee, helped her during the renovation by packing up things and helping her decorate after the renovation.

Also, during my time in Boston, our rental property had a major issue with the plumbing. Our tenant had to move out for a week. During that time, my father-in-law, took care of dealing with the insurance company and got the house back to livable conditions.

Being home filled me with mixed emotions. I was happy to be here, but I was somewhat nervous of something cropping up and having to drive 2.5+ hours to Emory to be treated. I quickly got back into the swing of things at home. Sara was extremely patient with me. I did not know where utensils or dishes were being held. I had become used to a routine in Boston and I became spoiled by the freedom to do what I wanted when I wanted to do it. (With limitations of course)

DRUGS, Side effects, MORE DRUGS……….

Prior to leaving Boston, I was put on some huge doses of steroids to fight the GVHD of the liver. This resulted in several unintended consequences that I was not prepared for at all. First of all, I honestly felt that I was losing my mind, that I was going insane. My thoughts were out of control, and prayer and meditation would not help. I sought the help of a therapist and it proved to be a godsend. I learned that the steroids were a large part of the issue and as I was weaned off it would get better. Another side effect is that the steroids raised my blood sugar to the point where I now have type 2 diabetes, take another drug for that and also I have to give myself insulin shots 2-3 times a day. Weight gain and sleepless nights are also some of the side effects of the steroids. The combination of steroids and immunosuppressants also make my hands shake a lot. 

The doctors at Emory have been just as great as the docs at Mass General. In trying to wean me off the steroids, my liver counts went up again and we had to increase again. Then my liver became steroid dependent in order to function. Because of that and I have been put on another new drug- Jakafi. It has been a constant roller coaster ride. Every time we think we got this, something else seems to crop up. In seeing the doctors every other week, I receive new, prescriptions, dosages, orders…..

The New Normal

I am getting stronger every day. I have been able to start a workout program with a great friend at Wynlakes. As the steroids decrease, I feel like I am getting back to normal both mentally and physically.  I will be on the new drug for at least a year. I spend an hour or two every week organizing and refilling the 15-20 prescriptions that I take daily. The hope is that I will get off the diabetes drugs & the immunosuppressants with the help of the newest drug. Recently the doctors doubled the dosage of the Jakafi in hopes of getting this under control. Based on my most recent blood tests, it seems to be working as well as can be expected.

COVID-19 - Quarantine

With the advent of Covid-19, it has been even more critical that I stay away from possible infection. We have spent the last 6 weeks, in quarantine, where we only have contact with the grandchildren, Neil and Trisha.  We have really made the best of this situation. We have been able to get groceries delivered and Sara and Trisha, wash all of them before bringing them into the house. I have only left the house to go give blood. My doctor’s appointments are all virtual now and we have pretty much settled into house arrest.

Life is good! The girls spend every Saturday night at the house with us. We have family meals 4-5 times a week and we have been able to enjoy one another’s company. We purchased a PS4, so I can race formula 1 in the comfort of my living room.

We will get through this. We have been in training for the past year, masks and disinfectant have become a part of our lives! I am certain that the hardest part is behind us. I have no idea what the future holds, but I do know that we have gained strength from this struggle where we are confident, we can get through just about anything.

Thank you all for your prayers, inspiration, financial & emotional support to help me and my family #KickCancersAss.