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!

Bad Side of Statistics, Cancer, and Relay for Life

I’m sure if you know me well enough to read this blog, you already know that I have been diagnosed with Myelodysplastic Syndrome. That is certainly not something I was ever expecting to hear, and it still feel weird to acknowledge that I have cancer. I don’t want my social media to become consumed with nothing but this topic, so I created a stand-alone blog to post updates and news.

The title is an homage to statistical improbably of someone having this condition who is under 40 years old (extremely rare, as the American Cancer Society puts it) who has not been treated for another type of cancer or been exposed to radiation or dangerous chemicals. Given that only 0.0048% of the population has it in the first place, and the majority of those are over 60, I am truly a statistical oddity. There are only about 13,000 cases diagnosed a year. Compared to breast cancer’s roughly 250,000.  I’ve never been normal in any other area, so I guess this shouldn’t be a surprise to anyone.

I have also joined my wife and mother-in-law on a Relay for Life team. You can click on the logo to see my page there. If you are so inclined, I would be thrilled if you made a donation, joined our team, or joined your local Relay event if you live outside of Baldwin County.

One thing I learned very quickly was how important teams are after diagnosis. It took 6 doctors, 3 nurse practitioners, and more nurses and lab techs than I could possibly ever count or keep up with to come up with a diagnosis and treatment plan. And that is in addition to my wife, parents, and other family, friends, and colleagues who encouraged and kept me going through the entire process. I would be thrilled if you would join my team with your thoughts and prayers. I can say with confidence, it is a great team of which to be a part.

Treatment Has Begun

Daniel started his Red Cell Stimulating shots on Friday. He will have a shot every three weeks for a total of three shots. He is able to do his treatment here in town. He will have a follow up in March with Dr. Khoury at Emory. After the first round of shots they will see how the marrow is reacting and determine the next step. The main side effect of the shots is fatigue. His hemoglobin rate is at 8.6 (down from 9.7 when he was released from the hospital). Next week they will check his levels again and do a blood transfusion if needed.

I’m sure Daniel will post soon but I wanted to update everyone.

Thanks for the prayers!

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.

Now more than ever…

When I started my journey in fresh childlike trust
I believed that the Lord’s way was best.

When my journey began, my trust was childlike, because I was a child. I asked the Lord into my heart at an alter made of the dining room chairs put in a row, in my home in the smallest of small towns (it doesn’t even have a post office). But even at a young age, I knew that I needed something that I didn’t have, and that no man could provide.

I can tell you now the time
I can take you to the place
Where the Lord saved me
by His wonderful grace

On January 5, 1991, realized that even though I was a “good kid,” I was still a sinner. I asked God to forgive me of my sins, to come into my heart, and to “cleanse me from all unrighteousness.” The journey over the last twenty-four years has not been easy. There have been times when God’s presence would have not been any stronger if I was standing in the throne room of Heaven, and there were times when the valley seemed insurmountable.

Looking back, I can see the valleys were all used to teach me more about the King I serve. I learned that just because I want something, it is not what is best for me. I learned just because someone claims to be a man of God, it does not make him infallible. I’ve learned that just because someone makes assertions based on scripture does not mean that the assertions can be accepted without verification, study, and prayer.

Oh, but now more than ever I cherish the cross.
More than ever I sit at His feet.
All the miles of my journey have proved my Lord true,
And He is so precious to me.

I can honestly say I am stronger in my faith than I was at this time a year ago. The convictions I have are mine; not thrust upon me by my peers. The Christian walk really does get “sweeter as the days go by.”