Marrow Biopsy Results

Well, it’s been a week since I got my results, and I just realized that I never posted an update. So, here it is.

I got the results Tuesday (October 3rd). We had gone up to Atlanta the night before, as we typically do with morning appointments. The 2 1/2 hour drive up is bad enough without dealing with morning rush hour as well! Plus, it gives us a chance to eat dinner at Cowfish. My taste buds gave out on me part way through, but it was still a fun experience.

We got up the next morning, had a hotel breakfast, and headed on to the doctor’s office. Thankfully this time, we were not delayed by a flat tire the way we were on the day of the biopsy. But I will say… the parking deck of Tower at Northside Hospital was NOT designed for full size trucks. Or really anything above the size of a bicycle. But that’s beside the point…

Hanging out in the consult room waiting for the doctor.

Since it’s flu season, everyone in the office has to wear masks since most of the patients are immunocompromised. Nikki got another example of why I can’t stand the masks, but it did make for a smashing photo…

So, for the actual results. The cellularity, or how the volume of the cells compares to the other components, was at 10, down from 30 when I was diagnosed. For someone my age, it should be around 70. This means, not shockingly, that the marrow is not producing enough blood cells, and what cells they are producing are malformed. That much we knew. What we didn’t know was that while my CBC levels (which are checked twice a week) had been holding fairly steady, production was down overall. There are two possible reasons for this. It could just be a normal progression of the cancer, or it could be a reaction to the chemotherapy. If it is a reaction to the chemo, it is possible that the subtype of MDS I have could be treated effectively with a different protocol. If it is progression, that would signal to go ahead with a marrow transplant.

I got a unit of blood on Monday. They took it all back on Tuesday. This isn’t even all of the vials.

So to be sure, they have discontinued my chemotherapy for three to four months and then will perform another biopsy. If the cellularity improves, they will try the new protocol. Otherwise, we will move forward with the transplant. They did say I had several matches in the database, and that is just a matter of which one could come in for the donation first. They also drew [a LOT of] labs for more bloodwork. So things are progressing, even though for now we are waiting.

So for now, we will continue the twice a week bloodwork. I’ll still be getting a growth factor injection (Arenesp) every three weeks to boost red cell production. I’ll also be getting blood transfusions as needed as I have been, and was doing prior to starting treatment. So for now, we wait and see. And as always, pray for guidance and blessing.

Another test, or why my hip hurts

Nikki and I as I was about to be wheeled down to the procedure.

This week, as if dodging Hurricane Irma wasn’t exciting enough, I also had to travel to Atlanta for a new bone marrow biopsy. This was my third. First one indicated possible MDS in November 2015, but it was such a long shot they kept looking for a cause elsewhere. I had another one in January 2016 that led to my eventual diagnosis. This one was for a more exciting prospect. This bone marrow biopsy was one of the early steps in moving forward with a transplant. There is still a long way to go, but there is progress. And, progress is exciting.

Since I had to be at the hospital at 7 AM, we went up the evening before. Had dinner at The Cowfish, which despite the mind boggling fusion of sushi and burgers, was delicious. We got up, headed to the hospital the next morning, and had a flat tire.

A flat tire. Seriously? The good news is I drove around the hotel instead of pulling straight out into traffic. As annoying as it was, we were able to deal with it in the hotel parking lot instead of on the side of the road. And y’all, I have a superhero wife too. She was out there right with me working to get it changed, and doing it quickly enough that we were only 15 minutes late for my appointment.

The biopsy went well. I was sedated, so it was much better than the second one. The only complaint I have is they didn’t use my port, which means I had to get an IV, in the hand no less. But, that is just a personal annoyance.

We’ll get the results in a few weeks, and then we will know more about moving forward with the transplant. Until then, I’m still going with the chemo, Survive and Thrive “therapy”, biweekly blood tests, and blood transfusions when I need them.

A Year Like No Other

This time last year, I was being admitted to ORMC and being prepped for surgery for an “abscess.” Twenty-one days later, most of which I had spent barely conscious at ORMC and then Emory Midtown, I had been diagnosed with Sweet’s Syndrome. It was yet another condition I, my family, and most of my medical team had never heard of. Thankfully, we were at a hospital where someone had seen it before (which is a huge feat given only a few hundred cases have ever been documented). Even after I made it home, I faced the worst depression I’ve ever endured, being unable to walk or care for myself, and continuing pain. Eventually I graduated from the wheelchair to a cane. I was able to drive again. And now I’m able to walk unassisted again.
 
Me with my wife and parents following dinner on the one year anniversary of my hospitalization leading to a diagnosis of Sweet’s Syndrome.
It has been an incredibly long year, but I am grateful for how it has brought me together with my caregivers (especially Nikki). I am grateful for caring nurses that went to extraordinary lengths (including learning the Charleston) to assist in my recovery. I never want to go through it again. But I am glad for the things I learned through the process.
 
Tonight, I went to dinner with Nikki, Mom, and Dad. We had fun. I drove us there. I walked in by myself. I ate something other than grits (which was basically the only thing I ate from August through October). And I am humbled by how blessed I am.

Oh, what a weekend…

To say that this past weekend was involved would be an understatement. Really, it was the entire week. It started, for me at least, on Tuesday with the Relay for Life Survivor Dinner. Wednesday, I started the Survive and Thrive program at Georgia College. Then on Friday, things really got crazy.

The day started with the Georgia College Celebration of Excellence. I hadn’t been on campus much since having to give up my job, so it was great to be able to see old friends and coworkers. But the highlight of the ceremony was getting to see my wife receive the inaugural Eve Puckett Community Service Award. Nikki worked hard to earn that honor, and it was well deserved. She’s worked with student groups, Relay for Life as a team captain, event leadership, and finally event lead, not to mention her tireless devotion to her students. But, that was just the beginning of the day.

Friday night was Relay. As soon as she smiled for the pictures following the award, Nikki had headed straight to the event site. She worked all day setting things up and making sure things went perfectly. She worked her heart out for it, and it was perfect. It was an amazing night, and she did wonderfully. It was well into Saturday morning when everything wrapped up and we made it home, but mixed with the exhaustion was a great sense of satisfaction. WordPress isn’t letting me upload photos for some reason, but I have all them posted in a Facebook album.

I am incredibly proud of Nikki. In the past year, she’s become a supervisor at work, was selected as the Relay event lead, received the award, and has been a great caretaker. She has accomplished a lot, and I look forward to what the upcoming year will bring.

One Year In

I’ve known I needed to post an update here for quite a while. But I honestly haven’t known what to post. Today is one year since my diagnosis. My entire life has changed in that year. New Year’s Eve 2015 was spent in Florida with my wife’s aunt and her family. We also made a day trip out to the panhandle to visit some friends. Looking back, I was tired. And I was dizzy. But I had no idea what was really happening.

When we got home, I had an appointment with a hematologist at Emory-St. Joseph on January 12th. Making the drive to Atlanta, I thought I was going to be getting the results of some CT scans and a new round of labs. Instead, my hemoglobin was dangerously low and I was admitted for multiple blood transfusions and for them to figure out once and for all what was going on.  Four days, another bone marrow biopsy, more lab work than I can possibly remember, and six units of blood later, I had my official diagnosis. Not surprisingly, I had no clue how much of an impact it would have on everything.

We waited for a clinical trial, but after multiple delays, we decided to go ahead with the conventional treatment protocol. In the mean time, we also dealt with a nearly one month hospitalization due to Sweets Syndrome. The treatments have been going well. I just finished my 5th round this past week. My numbers have been holding steady for longer, and I have gone from needing multiple blood transfusions each week being able to go a few weeks in between. My white blood cell counts, while still low, are much higher than they have been – meaning my immune system is doing better.

Due to my extended absence, my employment with Georgia College was terminated in November and I’m now going through the process of applying for disability.  It has been an insane journey. I’ve been through the Kübler-Ross model more times than I can count. But in the end, knowing it is a normal process and having a great team supporting me. And that makes finding acceptance much easier, even if I don’t like it. And I’m constantly amazed at the new people that have entered my life through the process.

Chemo isn’t fun. But being in the lab is like hanging out with old friends now. I’m spending more time enjoying ham radio and photography in between doctors appointments and treatments. I’m helping Nikki with Relay for Life, and have my own team (feel free to donate or join!). We also have several great fundraisers going with Thirty-One Tall Totes and Chemo Care Bags.

And mostly, I am trying to make the most of every moment. Every day is unpredictable. Some days I wake up and feel (comparatively) great. Other days, I have difficulty even getting out of bed. But either way, I’m grateful for being able to wake up and see a new sunrise. I don’t know what the second year may hold. But I know I can face it.