Have you ever seen a Neostar?

I forgot that I had Todd take this picture of me with the newly removed Neostar. I am holding it so you can kind of see how it worked. Only the bottom part with the three tubes was visible. The rest of the tubing was tunnled through a vein to my heart. I still can't believe that was in my chest for over 3 months! Yes, it is clean! Yes, I disposed of it after we took the pictures. What a happy day for me to share (sorry it took so long--I had it taken out back in March!) But a very happy day!

Clinic Visits- April 17, 2008 and May 1, 2008

I have had two clinic visits since I last posted. A lot can change in just two visits!

Thursday, April 17, 2008

My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)

I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).

Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!

I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).

Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.

We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).

So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!

(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).

But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.

Thursday, May 1, 2008

Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).

Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.

I’ll be back in clinic in two weeks. Hopefully, with more good news!

I would like to introduce you to Denise Rhodes

I would like to introduce you to an amazing woman, Denise Rhodes. Up until two weeks ago, we were complete strangers. But in this brief time, Denise has shared with me her goal of raising money for the Leukemia & Lymphoma Society of North Texas so that one day we will find a cure to all blood cancers like Leukemia. She has asked if she might share my story with others and said that she would like to do the Triathlon in my honor. I am continously humbled by so many special people like Denise who dedicate their time and energy to create awareness and help others like myself continue to battle this nasty beast called cancer and win.

Here is an e-mail from Denise:

"I recently joined Team in Training—for those of you who do not know, this is program which benefits the Leukemia & Lymphoma Society of North Texas. In this program I will raise money and train for the next five months in hopes of completing a Triathlon. Yes, for those of you falling out of your chairs right now—I did say a Triathlon!!!" http://thenationstriathlon.com/

"Once you have stopped giggling, I would like to tell you this is a huge challenge for me, especially the open water swimming part—but this is something I am committed to do. Having said that, I cannot do it alone—I need your help. I would like to invite you to help me raise money for this important cause. By donating or becoming a fundraiser, you can make a difference! You can use the secure link below to make your donation. From this link you can also learn more about L&LS and the Team in Training program. And if you are interested in a life challenge—you can even sing up to become a participant. "

"All donations are made in your name and will be paid directly to the organization. The website is secure, fast and easy to use."

http://www.active.com/donate/tntntx/DeniseRhodes

"Thank you in advance and please help me continue to raise funds by forwarding this link to as many people as you can and encouraging more people to donate!
I appreciate your support. Please check this link often as I will continue to update it with my training progress (or regress)."
Denise Rhodes
RELENTLESS for a Cure!
http://www.teamintraining.org/ntx/
www.lls.org/ntx


Please vistit her website and if you are interested in following her progress you can go to:

http://deniserhodes.spaces.live.com/

Thank you, Denise, you're an inspiration!