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.

I’m a pin cushion…

It has been an interesting few weeks as far as treatments go. On the 18th, I went to Dr. Gupta for what I thought would be an Aranesp injection. Instead, it was just another round of labs. My hemoglobin was only 6.7, so they promptly sent me across to the hospital to do the workup for another blood transfusion. Have I mentioned I’m a hard stick? Between Gupta’s lab and the hospital, it was 7 sticks to get two draws.

2016-02-19 10.16.33The next morning, I skipped several ceremonies at work that I really wanted to be a part of for an event I could have done without entirely. Well, not entirely. But if I could get the benefits of two units of blood without an IV sitting in my arm (it was another two sticks to get that going…) I would be very happy.

I don’t remember much about that weekend. I was pretty much in a fog for most of it. But I did know that I still felt rough. So, Monday I called and set up another appointment. The phlebotomists tend to look at you weird when they spend an hour trying to get blood out of you on Thursday, and you end up back in their chair on Monday. Sure enough, I was only at 7.6, so they ordered me another unit for Wednesday. Total sticks for the day? 8.

By the time Wednesday came around, I was totally famous. They tried a couple of times to start the IV, with no success. They ended up getting three nurses and an ultrasound machine in there to get it going. One of the nurses I have about 40 friends in common with. I have no idea how I haven’t met her before now. Well, I did, but it was last September when I went in for the bone marrow biopsy, but that’s a story for another day.

I went back to the cancer center on Thursday for another round of Aranesp and labs. There are some advantages of being known… I walked in, they had me a ginger ale waiting, and they held the other patients back so the entire lab could work on me together… or maybe it was so I wouldn’t pass out and wipe out another patient on the way down… I’m not entirely sure. But they got it on the first try (hemoglobin up to 8.0, yay!) and I was able to get my injection of liquid fire.

2016-02-27 15.30.38Friday and Saturday were the most productive days I’ve had in quite a while. I was knocking items off my to-do list at work all day Friday. As for Saturday, well… I’ll let the picture speak for itself. The shelf was a project I had been working on since last July. Dad came over and helped me get it finished, or at least most of the way so. It still needs painting and the doors mounted, but I’ll take it. We also got the garage cleaned out from the disaster area it had been from one too many projects going on at the same time. Added to that, my in-laws helped me swap the guest bedroom and my office. Everything looks so much better now. I’m exhausted today, but it is an exhaustion that comes with a tremendous sense of accomplishment.

This upcoming Friday, we have an appointment with the main doctor at Emory. We’ll head that way Thursday after work and spend the night. Oh, the joy of 7:40 AM appointments!

One week in

Well, it has been a little over a week since I heard the earth shattering words… and I still don’t think it has fully sunk in yet. They gave me a weekend pass, but I had to go back up to Atlanta on Tuesday for more labs. I also had a discussion with Dr. Szabo, who referred me to Dr. Khoury at the main Emory campus to develop the overall treatment plan.

I had a meeting with Dr. Khoury on Friday. For now, he wants to focus on hormone injections to stimulate red cell growth. Eventually, I will need a bone marrow transplant, but for now, the probability of serious complications from that procedure is greater than the MDS turning into leukemia.

I’ll still receive transfusions as needed, and eventually Dacogen may be on the table as a possibility as well. But for now, the main goal is to get my weight under control to make the marrow transplant less risky when it is needed. So, this blog will also be covering my weightloss journey.

The Diagnosis

I had been feeling “off” for a little over a year. I wrote it up to being over weight, and the occasional blood sugar drop. I was going to the doctor for regular checkups, but nothing turned up. There was the issue of not ever being able to do blood work.  Because neither the nurse nor the PA could ever get a good stick on me, it was always written up as something that would be done next time.

This past summer, I changed doctors. The new practice had on-site labs, and dedicated phlebotomists. They did the long overdue blood work, and there were some abnormalities that indicated I was slightly anemic. At the time, it wasn’t that big of a deal, but the new doc was through. He sent me to a gastroenterologist for a full workup to look for internal bleeds. After a colonoscopy, endoscopy, and capsule endoscopy, nothing turned up.

After the clean GI exams, the next stop was a hematologist. More blood tests were done, with the only result being a decreasing hemoglobin. Next was a bone marrow biopsy, which showed no signs of any issues, other than it having an extremely low density and that it was not producing red blood cells. Finally, I was referred to specialists at Emory Healthcare.

I had my initial appointment there with Dr. Szabo and did a ton of blood work. After the holidays, I was also scheduled for a CT scan to check my liver. This past Tuesday,  I went for the results. While the report from the scan was good, the results from the blood work was not. I had gone from slightly anemic during the summer to severely anemic in December. In fact, it was low enough that they walked me from the appointment directly to hospital admitting.

Over the course of four days, I was given six units of blood, which brought my hemoglobin back to acceptable levels. They had also pulled more blood for labs than I can possibly count and did another, and more extensive bone marrow biopsy, we had an answer as to what was causing everything.

Dr. Szabo and Dr. Bodo gave me a diagnosis of Myelodysplastic Syndrome, which is basically unheard of in someone my age. This blog will chronicle my journey through this process, and maybe connect with other people who are going through a journey of their own.