Tomorrow I’ll have my one month check-up. It will have been a month since I was released from the Duke SCT Clinic. I feel pretty well, with no major complaints. I’m filling a jug for them, and will have blood drawn when I get there. Aside from CBCs, it will probably be at least a few days before I get any results.
Someone from the LLS asked me to post this.
Being diagnosed with a serious disease such as a blood cancer is terrifying and people facing a cancer diagnosis need clear accurate information and they often need that information quickly. The Leukemia & Lymphoma Society’s Information Resource Center, a call center staffed by master’s level trained professionals, is marking its 10th anniversary this fall. This call center is the only one of its kind because of the depth of individualized service it provides. There are literally hundreds of different sub-types within the blood cancers and our staff is trained to identify the special needs of each caller and help that caller find the resources he or she needs, find clinical trials, and connect with local services in his or her community. In addition to being well versed on a broad range of disease information, each specialist has an area of expertise to provide more enhanced services. The call center has received nearly 500,000 calls since its launch in 1997. Translation!
s are available in more than 140 languages. In FY ’07 the IRC received more than 75,000 calls. The IRC is currently engaged in a patient navigation study to offer proactive follow up for callers. The center is reachable at 800-955-4572, via email at firstname.lastname@example.org or chat online at www.lls.org and clicking live help.
Why would anyone call me sir? I was pumping gas today, wearing my IMF cap to cover my bald head. I had on flowered pants and a neon orange t-shirt with a cartoon dog on it, for crying out loud. Plus, I’m only 5′ 5″ tall, not to mention other obvious attributes. There’s no way anyone could mistake me for a sir! It happened last year when I lost my hair too. I think hair must be more important to how people perceive another person than I realized.
Remember Julia Sweeney’s Pat character? I don’t even own any clothes like that. :)
It’s been a while since I posted. I’ve just been taking it easy.
I’ll have my (close to) 30 day check up at Duke soon, and maybe I’ll find out that my m-spike has gone down. My local doctor let me sneak in a SPEP a couple of weeks ago, and I was surprised to see that the results weren’t much different than they were in July.
Today I walked 2 miles. I’m working my way up to 3. I even have a workout buddy, so I’m more motivated to do well. The time goes by a lot faster and is much more enjoyable when you have someone to talk with while you’re exercising.
Tomorrow it will be a week since I got home. I’ll have an appointment with my local oncologist for a blood test. I’ll have a weekly blood draw until I go back to Duke in about 3-4 weeks. I don’t even remember when my appointment is, so I’m counting on them sending a reminder!
I think it will be a good long while before I leave home again. I keep finding things that remind me not to trust people. For example, in my back yard someone took an old broom and burned the end of it off. There’s an ashtray on my deck with cigarette butts in it. Things are missing (including prescriptions like percocet and xanax).
I have some lingering side effects from the SCT. There’s fatigue, which must be from anemia (I’m guessing). My eyes water constantly. I have a lot of trouble getting to sleep at night. The first several days I had achy legs, but that’s better now. I have what looks like mild rosacea. I feel like I lost muscle mass while I was gone, because my legs are weak. I’m walking every day, but probably not as much as I should. Last, but not least, my GI tract is still not normal. I was told it could take up to a month for that to get better. I plan on writing more about what the mucositis was like. I’m just not sure when. My concentration is weak, so writing is a chore. Oh! If you’re waiting for a reply from me via email, I promise to get that done soon.
I made it home yesterday. I’m SO glad to be here. I went straight to bed when I got home, and slept for what felt like forever. I got up at 5:30 this morning, walked the dog and then went back to bed until 10:30. It felt great to sleep in. It’s nice not to be on anyone else’s schedule. I found myself feeling bored this afternoon, but that passed. :)
Thanks to everyone who made this easier for me. You all know who you are. Thanks especially to Rachel and Monica.
I’ve just been told I’m going home tomorrow! I feel as well now as I did when I came in here, so I can only imagine that things will get better and better as time goes by. Years of drugs and chemo take their toll. This procedure will give me the best possible chance of having some long drug-free time.
I do feel tired, but that’s because my HGB hasn’t returned to normal yet, and there was that high dose melphalan a couple of weeks ago. I’m sure it takes time just to get over that assault.
When I get home, I’m starting a new life. I’m going to take good care of myself and make it as difficult as possible for the myeloma to come back.
Oh! I get this catheter out tomorrow! That alone is worth some celebration.
My WBC today was 7.0! My HGB dipped a little to 9.8, and the platelets are at 23. This chemo experience was a lot like Cytoxan, in terms of what it did to my counts, with the exception of the WBC, which got to 400 at its lowest.
Overall, the experience wasn’t as horrific as I imagined. I wouldn’t call it a vacation though. :)
I met someone here who had an allo transplant, which did not engraft. There was no match for her in the national registry. She had to use her son’s stem cells, which they said didn’t match. There were limited donors because she’s an African American. I wanted to find out if anyone has run a donor drive? I would like to try to help somehow.