This week is my third week of no chemo for the first cycle. Felt pretty good, the fatigue is not as prevalent now as I was able to work three days last week and plan to work four days this upcoming week. Friday is the lab work for this week and I also meet with the doctor for the first time in about a month to see where we are at. Last weeks lab resulted in me getting an infusion of blood, but no platelets. I also had several tests done of heart and lungs just to make sure there are no other outstanding issues.
My three brothers have all gotten their blood samples in. It will take several weeks to have them “typed” to see if they are a match.
So overall, been a quiet couple of weeks. Plan on going out to dinner Monday night with the Dine Out On A Dime group I have been a member of for the past year. Looks like the Baseball Cardinals are going to leg an egg this year. Guess we have to start rooting for “Sam the Ram” 😉
I went back to work Monday, August 23 for the first time in about a month. I had been working from home for the past month depending how I felt and working around appointments. Those of you who work off shifts (I worked 3rd shift for about 2 1/2 years when I first started at Maritz) know that it is easy to get “left out” on what is going on at work. The same thing happens when you work from home for a long time…you are there..but you are not there. Hopefully I can get into work a few days a week going forward. The biggest variable is fatigue as I can’t figure out why one day I am fine, and the next day I am really tired even though I have not had any treatments for several days.
It was nice talking to everyone at work and eating lunch in the cafeteria like normal folks. Even a couple retirees I use to eat lunch with showed up (nice seeing you Dale and John!)
Right now I am in second of three weeks of no chemo. I have lab work once a week, and this week it is Thursday. They will also do some other tests to make sure I have no other health issues (Heart and Lung tests, X-Ray). Last week they took 15 viles of blood for testing. (Don’t worry, they do not stick me 15 times, they stick a needle in once then keep changing out viles). The last “Explanation of Benefits” letter I got said each test (one per vile) is $218….glad I have health insurance!
That’s it for now. As I said before, I am not going to be putting out updates every day but feel free to email me directly if you want to know more.
Completed the first round of five-day chemotherapy Sunday, August 15. So far, I have not had any side effects, but everyone keeps saying that I will start feeling fatigue as this week goes on. I also continue to have to have some muscle stiffness in neck and back if I work on computer too much 😦 This week I should get my schedule for the next month. They have already started the process to check if my three older brothers will be stem cell matches.
Thanks to everyone who has sent me personal notes and cards. You can send email’s directly to email@example.com if you don’t want to comment here on WordPress.
My neighbor is taking care of cutting the grass. All of you know I try to do things on my own so it’s hard to sit back and let other people help me out. Susan has loaded my refrigerator up with a bunch of food that I can cook or microwave quickly. They encourage people in treatment to graze throughout the day rather than eating one or two big meals. My mom only lives a mile away, so I am going there on weekends for main meals. Eating a lot of protein is supposed to help build blood counts, so I might have to start going to Dairy Queen and Ted Drewes more often 😉
Work has been good in letting me have a lot of down time since lately I have only been able to actually sign in and do work for a few hours a week. I would like to give a big shout out to my boss Ron Hunsaker and our Department Administrative Jean McFerron for getting the word out and keeping people informed at Maritz.
The baseball Cardinals have continued their inconsistent play. Just when it looks like they are going to go on a tear, they lose two out of three to the Cubs. But they still have time to get it together, maybe they need to have another brawl!
Three weeks off chemo treatment. I will have to get lab work once a week still but should be a little calmer for the next few weeks.
I will leave you with this for those of you superstitious: 13 Year Old Boy Struck By Lightning on Friday The 13th
Today officially started treatment. 5 days of chemo, then 3 weeks off. This was the first day and there was a lot of information to digest. Met with doctor, nurse coordinator, they even did a personal Power Point presentation!
The actual chemo drug is Decitabine and it is administered via IV. It only takes an hour. However, two out of the 5 days I have lab work first so they can check my blood counts and determine if I need blood or platelet infusion. Today, only a platelet infusion. It was about the same level as last week, which is good. It means my counts had stabilized and even gone up a bit.
If you are wondering, I will not lose my hair. The are saying with me being relatively healthy otherwise, probably the biggest issue I will have is fatigue. Most of the issues should start showing up a week after treatment. They want me to drink a lot of water, stay away from sick people, and be super vigilant on washing hands and cleanliness in general. You have all seen my office desk, you know I can be clean 😉
How about those Cardinals? I was able to watch game during treatment. Interesting watching what other people do during treatment. Some type away on their laptops, others chit-chat, a lot just lay back and take a nap. With doctor and nurse visits, I didn’t really have much time to do anything else this day.
That’s all for now, gotta drink my water…
Hello family, friends, and coworkers. I am going to use this blog as an attempt to keep everyone updated on my health status in one spot.
As of today I have officially been diagnosed with myelodysplastic syndromes (MDS, formerly known as “preleukemia”). There are a lot of different types and later on I might follow-up with more specifics. For now, the treatment is outpatient chemotherapy and getting my three brothers “typed” to see if they are candidates for stem cell transplant. The therapy is 5 days of chemo, followed by 3 weeks off chemo, over the course of several months. After that, a stem cell transplant could occur which is the ultimate cure.
How did it come to this? Well, I don’t know. You can read the description of disease and it pretty much is a random thing. But I can tell you how it was discovered…
After our last softball game on July 1, 2010, I got what I thought was a pulled muscle in my chest. After several days of not getting better, and since I also had some strange heart palpitations (which I have had in past) when I would go up several flights of stairs, I thought it best to see doctor. To his surprise, after an X-Ray he found the “pulled muscle” was really pneumonia or some pneumonia like infection (interestingly, I was not having any pneumonia symptoms). At that point he prescribed a 10 day antibiotic treatment and also took some blood tests.
The pneumonia cleared up but I was still having heart palpitations. The blood tests came back with all my blood counts low…red, white, platelets….anemia. That explained the heart palpitations as my heart was compensating for low oxygen levels in blood. I do not have any heart problems. But anemia is a symptom of something else, not a disease on its own.
More tests confirmed anemia was not diet related. Doctor then assigned me to a St Marys Hematologist, who performed a Bone Marrow Biopsy – BMB (if you look BMB on internet, the test is not nearly as bad as some sites make it out to be. It was actually painless). The result of that test was somewhat inconclusive….the sample was not the best and the numbers were borderline. Then I was sent to the “Ivory Tower” specialists as Barnes Siteman Center. Another Bone Marrow Biopsy, lots of blood draws, and the final diagnosis is what we have today.
For the most part, I am fine now. I can go out to store, drive, etc. I can’t do very strenuous things more because I can’t risk injuring myself while my blood counts are low. I could end up with uncontrolled bleeding or infections. My main problem right now is neck and back muscle stiffness, probably from being on computer too much 😉
So with that, I better stop for now. Look for more updates soon. Thanks for all the notes and emails of concern, I really appreciate it 🙂