Tonight, as honorary chair of the Baldwin County Relay for Life, one of the things I have to do is give a speech. I imagine I’ll end up going off script (this is scheduled to post right around the time I deliver it), but here is what I have prepared.
Jan Mabie is a brilliant man. He is also terrifying to have as a professor for the first time. Because of his reputation, most students only took him once. I didn’t have any choice in the matter. I transferred in and had to take him for a Presidency class. Since he was the only one to teach research methods, I had to take him again. I have no idea how, but I did surprisingly well in research methods. And for the next 3+ years, I tutored, held study sessions, and calmed a lot of fear and despair. To demonstrate just how weird I am, I loved it. I went on to take graduate research methods, advanced methods, and asked Dr. Mabie to chair my thesis committee.
Time moved on. I graduated, got my first – and then my second and third – job. I can still do empirical analysis if I need to, but it hasn’t been necessary in a very long time. Basically, I turned into what everyone else had as their goal. Be able to read an empirical report if it comes across my desk. And I’m strongly okay with that.
Now, another type of research has become important. I track research and clinical trials for new MDS drugs whenever I get a chance. Which leads me to my challenge.
I’m calling in my markers. I want everyone who I walked with through Systematic Analysis or Quantitative Techniques (or the lucky ones that did both) to donate to Relay for Life. The amount is not important. I just want the number of donations to be high.
We are on the brink of many “revolutionary” developments, as one of my doctors put it. Let’s all pull together and make that happen. I get nothing out of this except satisfaction. If someone donates enough to put me in the lead, I will have bragging rights but I will be more than happy to share them with you. But it all comes down to finding a cure. And bragging rights, satisfaction, cross tabs, chi-square, or z scores mean nothing compared to that.
Join me in this fight. You won’t have to crunch any numbers, use OurStat or SPSS. But what you will accomplish is being part of something that will change the world.
Daniel had an appointment at Emory with Dr. Khoury Friday. They were able to get his labs with only one stick! Praise the Lord!
The red blood stimulation shots (Aranesp) are not currently having an affect on the bone marrow. The plan is to continue the shots every 3 weeks until June. A GCSF (Granulocyte – Colony Stimulating Factor) shot will also be added to the treatment. This shot will work on the white blood cells and hopefully boost what the Aranesp is trying to do. They will continue to monitor Daniel and do transfusions as needed.
In June, Dr. Khoury will reevaluate where we are and we will come up with a plan. Currently, the plan is to try for a clinical study that will begin around that time. Trying to avoid chemotherapy for as long as possible.
We appreciate all the prayers! There are good days and bad days but the Lord is in control and continues to bless us!
“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.” Proverbs 3:5-6 (KJV)
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.
The 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.
Friday 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!
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.