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.

To the Nurses of Ambulatory Care

20160526_142240I need to brag on some folks for a bit. My entire care team has been great, but the crew at ORMC Ambulatory Care has earned a special place in my heart. No one wants to go to a hospital for a transfusion, but if you have to go through it, it is comforting to know that you have a great team behind you. All of them are great, but Kim, Erin, Angie, and LeAnn have become like family.

I’m not an easy stick; I’ve never had been. Normally, by the time the IV is started it has taken all three of them and an ultrasound machine to get it going. While my oncology team was hesitant about me getting a port, they convinced them that the access issues were serious enough to warrant it. So, as I type this, I am getting this week’s transfusion through my newly implanted (last Tuesday) port.

It takes a special kind of person to be able to work in healthcare, and even more special to be able to work with cancer patients. But it is a rare individual indeed who can make someone look forward to spending 2-4 hours in a transfusion chair, just to get to chat with them. And these nurses are a credit to their profession and to humanity as a whole.

Even though I wish it could have been at a social function, I am glad to have had the honor to meet these women. And I most certainly hope to keep in touch with them long after my days of weekly treatments are completed.