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!

Day +117 "My 34th Birthday"

Monday, April 7, 2008 (late post)

You know as I have gotten older I don’t find myself thinking about my birthdays as much. I know a lot of us who are in our thirties and older probably feel the same way. Birthdays aren’t so much of a milestone anymore. It’s “before we were married” or “after this child was born” or “when we lived here”.

So I thought my 34th birthday would sneak on by. But I got cancer when I was 33 years old. And I found myself thinking a lot more about my 34th birthday. There were some really dark and difficult times when I was first diagnosed with an acute form of Leukemia.

Would I see my children grow-up, graduate from school, fall in love and get married? Would I even reach my 34th birthday that was just 6 ½ months from now? So at midnight when it was official, Todd sweetly wished me “Happy Birthday." And I cried. I sat there and cried. I had made it…

Todd sat with me and comforted me. He never doubted that I would miss my birthday or any other birthday, anniversary, graduation, or wedding. He told me he had taken today off so we could celebrate.

It was a wonderful (and tiring) day. The girls were off to school and Todd took Aidan to Melissa’s so we could shop for my birthday present. We went to one of my favorite stores, Target. I hadn’t been out in so long. I picked out a pair of storage ottomans that I had been wanting for the living room. Todd said that we needed to pick up Aidan around 12:15.

So we headed back to Melissa’s and as soon as we turned on her street I noticed a lot of familiar cars. “12:15, huh?” Pretty specific time… I knocked on the door and when Melissa opened it there was a big group of friends, shouting “Surprise!” I was completely shocked that I just didn’t start crying as I walked around the room hugging and greeting everyone. It was absolutely wonderful! We all chatted away the hour. So many beautiful smiling faces that I hadn’t been able to see in such a long time! After it was over I just wished I would have thought of taking pictures! (Thank you, Melissa, for being so sneaky.) I confided to Melissa and Michelle later that I would have been bought to tears if I hadn’t already used them all up last night.

After the girls got home from school we had an early dinner (3:45pm) over at Chili’s near our house. I think we’re pretty brave to head out with four kids especially when one of them is a two year old! It was a nice time and the kids were so well behaved. We finished off the day and ate cake and ice cream.

I don’t think I’ll ever let a birthday “sneak” on by again. I just may not admit to my true age!

Day +115 “Kylie’s Birthday Party”

Saturday, April 5, 2008 (another late post)

I would have to say that today was the best “milestone” yet. We finally celebrated Kylie’s 8th birthday. Kylie turned 8 last September. We had planned a “High School Musical” party for September 29th and sent the coolest CD invitations to some of her friends. We had bought all the party supplies (thanks, Mom!) and planned the activities in the beginning of September. I was almost as excited as she was! Unfortunately, the party was postponed due to cancer.

Kylie is one of the BEST kids. She easily accepted having to hold off on the party until I got better. And who could have ever imagined 6 months later we would be able to have her party. Artie, Todd’s mom, was here helping us out the past few weeks and was leaving later today - so all the more reason to have the party.

It was so awesome to see the girls having so much fun; singing and dancing to HSM on the karaoke machine (thanks Kelley and Jimmy!). See for yourself how much fun the girls had.

After all was said and done, Kylie thanked us and said, "It was the best party ever!!" So, even though it was a crappy reason to wait, it was well worth it.

Day +113 “Clinic Visit”

Thursday, April 3, 2008 (late post)

Today Melissa came to clinic with me (Thanks, Melissa). This was the fastest clinic visit I’ve ever had. We were in and out relatively quickly and home before noon. I think I’ll ask her to take me from now on. Sorry, Todd.

The phlebotomists weren’t all that thrilled to see me walk in. Emmit said “No way! I am not even gonna try!” So the other one did (sorry, can’t remember his name). It was only one stick today! Maybe next time Emmit will have more confidence!

Melissa and I hung out while waiting to be called back to the exam room. Like I said, we didn’t have to wait too long. Vitals all looked really good. Hopefully, I’ll be taken of the Norvasc (high blood pressure medication), although I’m pretty sure some medication I’m taking is actually causing the high blood pressure. Ugh! Medicines and their side effects!

Dr. V was thrilled with my labs today. All of my blood counts (WBC, RBC, platelets, ANC) were in range. And that’s a first since all this started! She also congratulated me again on the biopsy results and DNA tests. She asked how I was doing and I told her the same thing I tell her every visit – just plain tired most of the time and tired, achy and sore muscles the rest of the time. I also had been experiencing frequent nausea the past few weeks. Dr. V reassured me the fatigue and soreness will improve once she starts weaning me off a lot of the medications responsible for the symptoms. So she looked over my record and discovered my stomach problems and nausea started when she doubled my fluconazole dose. I have a pretty bad history with the –azole family (anti-fungal). She said that not only will I start feeling better, but, that by reducing the fluconazole, she is basically starting the reduction of the Prograf (anti-GVHD, immunosuppressant). And that’s good news! FYI: An anti-fungal medication like –azoles are used preventively (blood borne fungal infections are life threatening post-transplant), but also to regulate and maintain oral Prograf levels.

All in all, it was a short and very sweet visit. It is always nice hanging out with Melissa and having girl talk! My next one won’t be until April 17th. Let’s hope that one goes just as well!!

Day +111 DNA (STR) Test Results

April 1, 2008

Bone Marrow Engraftment Results: STR Analysis*

Results:
% Donor (Tracy): >95%
% Recipient (Courtney): Below Detection

*Short Tandem Repeats (STRs) are highly polymorphic DNA markers that are used to detect the engraftment of normal donor cells (Tracy’s cells) in the bone marrow transplant recipient (Me) post-transplant. DNA isolated from WBCs of the patient and donor is characterized with 10 polymorphic DNA markers prior to the bone marrow transplantation. The patterns are compared and one marker is selected to distinguish donor and patient as uniquely different from one another. This will be subsequently used to assess the status of donor cell engraftment. [Source: Molecular Diagnostic Laboratory]

Translation: Tracy’s cells have successfully engrafted and are producing all of my blood cells. Her cells are now my cells and are cancer free.

Tracy and I genetically speaking are “blood twins.” What flows in her veins now flows in mine. I cannot begin to count the number of times I have been brought to tears as I truly comprehend the gift of life that Tracy has given me. How can you possibly begin thank someone who has saved your life? I love you, Tracy.