Bone Marrow Biopsy Results

REMISSION!

Ashleigh, Blake and Bridget

If there where three people that I could have seen again from my long stay at Harris Methodist Fort Worth Hospital, it was two of the three pictured here. (Just kidding, Blake, I know you've been waiting a few weeks for me to post this picture. Sorry it has taken so long.) No really, I spent over a month on the Oncology 7th floor and 2/3 of my memories are very foggy (just ask Michael Jackson or Paula Abdul-- see post Feb. 11th). But always, my clearest, best memories are of Bridget, Ashleigh and Blake.

Bridget (pictured right) was there the day they rolled me in to the hospital room. I was scared (that's a understatement), confused and in tears, and she was the one who brought answers and comfort to me and my family. It seemed like 'no problem' was her motto. If it seemed like no one could get something or find out something (like 'where is that doctor?'), Bridget would say 'no problem'. If it wasn't right, she made it right. She got it done, found that doctor, answered the hard questions and still had time to make me laugh. Bridget was also there the day I left. I think she saw the uncertainty in my eyes and read my mind. She told me that I was ready.

Dignity is really the one thing you check at the front door when you're admitted into a hospital. As a patient you have to bare (and 'bare') everything to complete stangers. (Sometimes you'd think it was Mardi Gras the number of times I was asked to lift up my shirt.) Strangers, really, who see you at your phyically and emotionally lowest. Ashleigh made me feel like I still had my dignity. She was compassionate. Ashleigh saw me struggle as personal barriers and space continued to shrink. She always pushed them back out to my comfort zone. And if they had to be crossed for a test, procedure or something simple like help getting out of bed to use the restroom, Ashleigh always showed extrodinary kindness and understanding. A remarkable person.

Blake endured my drug induced antics and harassment, my never ending non-sense chattering and gossip, and bad jokes (not as in 'poor taste' like the one above, just bad as in 'not that funny'). I think I still mixed in a good amount of complaining. He still came in with a smile.

You would think after more than a month, I'd be ready to leave to that room. But truthfully, the idea was frightening. I wasn't going to see all the nurses and techs that took such good care of me everyday anymore. It was like leaving family. Thank you.

La Wonder

This is La Wonder. Not many of you have ever met her or maybe hear me talk about her. La Wonder was one of my favorite techs at the BMT Unit at Zale-Lipshy during my long stay there for my bone marrow transplant. I was able to see her this past week after a visit with Dr. V at the BMT clinic. Just by looking at her smile I know that I don't have to tell you the kind of person she is. She ALWAYS had that smile on when she came throughout the day to see me. But don't be too decieved by the dazzling smile and beautiful laughter that came with it. If I even remotely looked like I was sulking in bed she would NOT let me have a pity party. She would be at my bed pushing it up to a seated position and get me up and out. Sometimes like a drill sargent but filled with such compassion. And, boy, did she make me laugh hard. Although I think I kept her entertained when I was loaded up on narcotics... she would walk in and want to know if I had what she called those "margirita eyes" going on. She'd take one look at me and just laugh and know exactly what medication I was on.

One year later...

It’s hard to believe everything that’s transpired the past 12 months. A year ago today (Click to see how it began) I was given the worst news of my life, causing my world as I knew it to screech to a halt. This yearlong journey essentially began with three simple and brutally honest words, “You have leukemia.” Looking back, it’s the longest and by far the most difficult year of my life, and, yet, it’s been filled with countless blessings – an unusual and unexpected paradox. You wouldn’t think you could ever use the words ‘cancer’ and ‘blessing’ in the same sentence, yet I find myself doing that quite a bit.

And so, to commemorate this day, I made a visit to the transplant floor where I had spent so many days to begin this year. I would have liked to have gone back to Harris Methodist where I was admitted this time last year, but that was the other side of town from where we were. I have to admit, my heart skipped a beat walking through those doors, but quickly settled as I realized I could leave just as easily as I went in.It was really nice being able to visit with a few of the nurses that remain so close to my heart. Fortunately, they didn’t recognize me right away – adding 20 lbs and a head of hair will change anyone’s appearance.




We also made some really good friends today. Frank and Barbara Springer are at the hospital waiting for Barbara to recover from her Stem Cell Transplant. She’s 8 days removed from receiving the stem cells from her younger sister. She’s doing great and we pray that she recovers quickly and is able to go back home by the end of the week! You can see their progress at http://www.caringbridge.org/visit/barbraspringer. Please send love and prayers their way.

Today also marked the second day of the bone marrow transplant symposium that Todd and I were able to attend in Dallas. It was great as we were able to make new friends and relate to others who have been and are going through their own trials with cancer and life post transplant. I’ll share more about that later this week. Thanks to our wonderful friends for taking care of our children and helping to make this weekend truly special for us!!

I meant what I said.

I meant when I said that I had made the decision that I wasn’t going to continue re-living cancer. And I haven’t, not a single tear. But I have had to be reminded. Especially the past two months.

At the end of June, there was a spike in my white blood cell count—particularly in a group called eosinophils (there are like five different groups—this particular group is responsible for allergic reactions and such). At this time, since I wasn’t showing any symptoms of GVHD (only what Dr. V. called “sub-clinical” cGVHD), she chose to increase my Prograf level back up and to stop the tapering until the white cell count stabilized.

Unfortunately, less that a week later, symptoms of skin, mouth and GI cGVHD started appearing. Most of them down right annoying, like the skin on my hands and feet peeling. The bottoms of my feet felt like they were sun burned, that unpleasant and uncomfortable feeling of walking across hot sand. Yet, the ones that caused most distress where the ones that affected my mouth and esophagus. I know everyone reading this can relate to getting ‘pizza burn’ on the roof of your mouth when you take a big bite of way too hot pizza. Mouth GVHD is like that but affects the entire lining of the mouth, lips and throat. Very lame.

While this really is considered mild to moderate cGVHD , it still posses an increased risk of infection. So on top of new medications to help treat and alleviate symptoms, I was put on prophylactic antibiotics that unfortunately caused their own new problems.

Having proper balance is important for just about anything in our lives—like being able to stand and walk straight. Our bodies carry good and bad microbes and when in balance we feel pretty good. Something like antibiotics can help restore the balance but sometimes end up pushing the balance in a completely opposite direction. And this is exactly what happened to me.

While helping prevent infection during this period of the cGVHD the antibiotics happened to cause a new infection located in my intestinal tract. Because some bacteria are opportunistic, a group of ‘bad’ bacteria (that almost every one of us naturally carry and never cause problems except in cases where the immune system is weakened) got out of control. Becoming another distressing illness, that, by the way could only be treated by an antibiotic. I am I the only one who can see a pattern developing here? Ha-ha.

Like I have said, mostly annoying, some down right nuisances and others a bit distressful. But once Dr. V. figured out what was going on, she’ll have me feeling much better in no time at all. And I can say for the first time in the past eight weeks I am feeling better.

You see, this whole process is a very fine line that transplant doctors walk patients along. On one side, there is the cancer. The other, complications related to a transplant (GVHD, serious infections, etc).

So on one hand Dr. V. was not disappointed to see the increase of WBCs at this time especially since she has been gradually reducing the anti-rejection medication. It shows us that Tracy’s donor cells are behaving exactly the way they should! We always talk about Graft vs Host disease, but haven’t really mentioned what is called “graft vs leukemia” effect. This is ideally the big pay off for going through such a risky procedure. That the donor immunity fighting cells would recognize any leukemia cell as foreign and destroy them. This “graft vs leukemia” effect is what essentially offers a “cure” and not just “remission” from the disease. That’s my goal—cure. So, the cGVHD I can handle.

Sitting with me...

This is a picture that I have in my bedroom. It was a picture that Todd took of the two of us sitting together during my transplant. You can actually see her blood being transfused into my body.

I see it at different times during the day. It never fails to tug at my emotions - making me stop and ponder what my sister actually did for me. She literally saved my life. Truthfully, though, I really don't need a picture to remind me. Whenever I have my blood drawn or even a tiny paper cut, I'm reminded that the blood is hers. I now, and always will bleed Tracy's blood. Sure, my body produces it. But only because she gave me the seeds, or stem cells, to grow it.

I love you, Tracy.

First Movie

First movie at a movie theater since I was diagnosed in September 2007- Kung Fu Panda. We took all the kids. Crazy idea! So how was our outing with the kids? Awesome! We made it through the entire movie with relatively small amounts of wiggles from Aidan (the two year old). A miracle! Hilarious movie by the way. I loved hearing the kids giggle and laugh. After the movie was over they were all doing karate punches, kicks and jumps in the air. Hi-Yah! I was glad that they didn't try moves on each other.

Second Chances

Not too long ago, I was folding laundry on the couch in the living room when I looked up and saw myself in the mirror. In that moment I didn't see myself as someone who'd had cancer and I knew that I had been given a second chance.

It was reaffirming something that I already knew, but in a way that dispelled the sadness. I wasn't going to be angry that I’d had Leukemia or worry about the 'what ifs' or 'whys'.

I had cried at least once every single day since I was diagnosed. But that day I decided that I wasn’t going to shed a single tear over it again. I had already experienced the sorrow, fear and uncertainty of cancer. I wasn’t going to continue re-living it. I was going to live. Period.

6 Months Post-Transplant

I just celebrated my 6 month post-transplant milestone with a visit to the BMT clinic to see Dr. V. Good news: I didn't have to have a bone marrow biopsy-- just lots of blood work. (Well, that's more like awesome news for just for me.) Better news: Only 3 of the 8 medications I currently take are related to the transplant. I have had almost thirty different medications since transplant. Dr. V has been slowly taking me off the Prograf-- the anti-rejection medication. I am down by 80% now with no evidence of GVHD. Best news: DNA (STR) testing continues to show that greater that 95% of my blood cells are donor cells (Tracy's cells). The lab will never report 100%-- but this is basically saying just that. My old blood cells can no longer be detected. My bone marrow transplant continues to prove successful. A TRUE MIRACLE!

‘Believe’ from my nurse Julie

During induction therapy, in one on my hardest hours, I deeply struggled with side effects of the chemotherapy, with pain and discomfort. I had received any and all medications possible and needed to wait almost an hour before any new drugs could be tried. My night nurse, Julie, came and she stayed with me. An oncology nurse who I knew had a lot to do and had a lot of other patients. But she came to me and stayed.

I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.

She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.

I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.

“Oil Change”

I went to the local ‘quick car oil change’ place near our home last week. I went inside the lobby to wait. A few minutes later a woman came in and sat beside me. I smiled as she sat down.

A minute later she looks at me and asks “So did you get a bad hair cut or was it chemo?” Yeah, I know! Who asks that! I politely answered that it was chemotherapy and that I had leukemia.

She then went on to explain that her sister had cancer and had under gone chemotherapy and radiation treatment. She said that she was familiar with the “chemo hair.” So that explained her question but still who says that!

It was the first time that I had actually gone out without wearing a scarf! During our conversation, I discretely took a scarf out of my bag and put it on. Perhaps I am just not ready to show my new hair. (This picture was taken a few weeks before this incident. So my hair looks a bit longer.) I'd love to hear opinions- bad hair cut or chemo hair. I'll post the results!

“Why I’ve been so quite lately.”

I am sorry that I have been so quiet lately. To all my friends and family who have continued to support me and who have been part of this journey I feel that I should be completely honest with what my day to day recovery is like and how I am trying to navigate through the experience of cancer. It is now that, the part about ‘navigating’ through this, which in the recent weeks has caused me to feel overwhelmed, alone and incapable of expressing myself. So, I haven’t blogged.

I have been so blessed to share great news from my clinic visits with Dr. V. Truly my lab results have been almost perfect for months now. I have been blessed to have avoided any serious infections, problems with GVHD or significant problems with medications. I have remained in remission and my sister, Tracy’s, donor cells have engrafted perfectly. I love sharing my good news with all of you. I know that each day is a gift. It is one more day in remission and one more day closer to hearing the word “cured.”

But honestly, the recovery is incredibly slow: with constant fatigue, muscle weakness and pain that causes frustration and loneliness. All and any of these symptoms could be caused by medications, effects of the chemotherapy or emotional stress.

I find myself desperately trying to return to “normal.” What I want more than any thing is to regain control of my life. The moment I was told I had leukemia I was robbed of the life I knew. For so long I’ve been a bystander in my own life. When I’ve tried to “jump right in” I became very disappointed when it was so apparent that I wasn’t ready. I am trying to return to being a mother, which as many of you know, is an exhausting job. I find myself limited in ability and strength. I feel like I am in a constant battle with my body and so far my body wins almost every day. It is so frustrating.

Recently a friend asked me how I was doing. I thought for a moment and replied “I think I am in the ‘angry stage’.” She looked at me unsure what to make of my comment. I tried to explain that cancer is like experiencing a loss; like someone you loved is gone. And you grieve for that loss. Weird, right? I know I experienced similar feelings when I was diagnosed like ‘denial’ (this can’t be happening, I don’t have cancer) and then ‘acceptance’ (ok, let’s do this, I have faith that I will be healed). So, I think maybe I skipped the ‘anger stage’ and perhaps depression. I don’t know if that makes any sense… You would think that I would be the last person on the face of the earth to have these feelings. Yet feelings of frustrations, anger and guilt find their way into my day, my relationships and my tear ducts. And truthfully, I was caught off guard by these feelings and unsure of the ‘why now’.

I sit here in think “how in the world can I feel mad? I am in remission, Heavenly Father has blessed my life, answered my prayers and shown His endless love for me and my family.” Yet, I find myself mad that I got cancer, mad that my hair fell out, mad that I still don’t feel “great”, mad that I can’t be that mom that my children need, just plain mad. So, I don’t call my family, I don’t return friends calls and my mind is so filled with questions, thoughts and worries that I can’t sleep . How do you find your way out of that when you feel so tired and your body aches and you can’t muster the energy? Sometimes I can’t ever imagine feeling “normal” again.

Dr.V reassures me that this tiredness and muscles aches will improve as she reduces medication and she added “with time.” She tells me that my recovery is going well and not to consider these rough days a set back. The rough days will come and go she said. And then one day there won’t be rough days like this.

I have learned from other AML survivors that they also experienced similar feelings and had the same struggles. Knowing that my feelings are “normal” and finding comfort, encouragement and support has allowed me to be more open with family, friends and Dr. V. I have chosen to see a cancer therapist, whose experience has been with patients of blood cancers and those that have received transplants.

This is where I am. This was why I struggled so much to blog. This is where I will learn to be healed- physically and emotionally. I know that I do not do this alone. Thank you for the continued encouragement and prayers. This is where I find inspiration- through you.

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.

Day +103 “The Bone Marrow Biopsy Results”

Monday, March 25, 2008 (late post)

What everybody has been waiting for the official bone marrow biopsy report:

Diagnosis:

BONE MARROW (ASPIRATE, CLOT, CORE BIOPSY, AND PERIPHERAL BLOOD):

- NORMOCELLULAR BONE MARROW WITH TRILINEAGE HEMATOPOIESIS.

- NO MORPHOLOGIC EVIDENCE OF ACUTE LEUKEMIA, SEE COMMENT.

COMMENT: Flow cytometric analysis on marrow aspirate provides no immunophenotypic evidence of a hematolymphoid malignancy.


Translation: NO cancer cells detected. I am still in REMISSION!

I can’t even being to describe the feelings I had as I read and re-read this report. I sat there and cried for a few minutes. First was a moment of disbelief. Then sheer happiness and gratitude. I felt this huge weight lifted from me, the weight of worry was gone. I was still in REMISSION. And next week we will receive the genetic testing (STR) that will confirm that Donor cells (Tracy’s cells) continue to produce healthy, cancer free cells and that Recipient cells (my cells) are no longer present.

I am so grateful for the love and support I have received during this time. So many of you, too many to many here, right now, have given me the encouragement to continue on and inspired me through your faith and hope.

I know each and every day that I have is such a precious gift and they are blessed by each of you. Thank you!

I love sharing such wonderful news. I will be visiting the clinic on Thursday and will have more to share then.

Day + 100 “The Milestone”

Friday, March 21, 2008 (Late post)

Today marks the 100th day since my bone marrow transplant (December 12, 2007). Today is also exactly six months since I was diagnosed with Acute Myelogenous Leukemia (September 21, 2007). Today we celebrate 155 days that I have been in remission (October 19, 2007). And in a few days, once we have the results of the bone marrow biopsy, I’ll be adding to the number of days I’ve been in remission!

The one hundred days post-transplant is significant in several ways. Generally, Acute GVHD, if it is going to act up and cause problems, happens before this time. I personally have been blessed to not have developed the Acute version. I did experience what my doctor believes were mild cases of GVHD, which were treated successfully with steroids.

Reaching the 100 day mark without developing serious problems or infections has been a huge blessing. It shows that my body is slowly recovering and medications are working. It also means that Dr. V will consider slowly reducing the Prograf. This is a medication that helps prevent transplant rejection by suppressing the immune system. Prograf helps prevent the donor cells (Tracy’s cells) from rejecting (attacking) the recipient cells (Me). I also think 100 days just sounds like a great goal and accomplishment. Regarding the significance of 100 days, I read this on a website, “The ‘100 day mark’, which is 100 days post-transplant, is generally considered a milestone - by this time, the [patient] is considered past the worst of the procedure and on the path to recovery. Full recovery is slow, with it taking up to two years for the patient to return to full health.” Ugh, “two years”! It’s actually comforting to know that I’m not behind in the recovery process. I feel like I should be back to full strength by now. I wish I was. But I know that I just have to take it one day at a time. And, eventually, whether it’s six months or eighteen months from now, I’ll be back to my old self. Or new self.

Throughout this journey, “milestones”, have helped me see and understand that I’ve been on the right track, that I’ve been getting better, and that I would make it. Six months later I have made it! But not alone.

I was never alone. From the first moment I heard the words "You have Leukemia" I was not alone. I had my husband, Todd, my mom and dad by my side. Not one single night at the hospital was I alone. Todd, Kelley, Tracy, or Susan were always by my bedside, sleeping on some horribly uncomfortable couch or roll out bed. During the days, I had my mom, dad, Todd, my brother and sisters and even dear friends to keep me company and help me cope. And even in the quiet hours of the night, laying awake in the darkness when fear and doubt would creep into my mind, I was not alone. The sweet peaceful reassurances of the Holy Spirit would calm my heart and quiet my fears and return my thoughts to the Atonement. And I would know that I was not alone in this battle with cancer and did not suffer alone. I knew that my Savior, Jesus Christ had not only suffered for my sins but that He had also taken upon Him my pains and sicknesses. I was not alone.

One of my favorite scriptures, that has helped me remember this is:

11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people. 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. (Alma 7:11-12)

I know that I was united in prayer with countless family, friends and strangers from all over the United States and Abroad, in different languages and in different places of worship. I was not alone. Thank you to you all who have cared for and thought of me and my family throughout during this time.

Day+99 “Bone Marrow Biopsy”

Clinic Visit- Thursday, March 20, 2008

You know that feeling you’d get in your stomach before an important exam or before a first date? Well, that is the exact feeling I had in my stomach today before my bone marrow biopsy but worse. I think it was made worse by the fact that I had to “fast” for the blood work. I think it felt worse because some where in the far reaches of my mind there is the thought that the cancer isn’t gone, that just one cancer cell is hiding somewhere… I hate how cancer can create doubt. But I’ve learned that cancer cannot take away hope, faith, love and courage. (And believe me it takes a little bit of courage to get up on the exam table to have a bone marrow biopsy.)

I think I’ve used the phrase “BEST YET” a number of times recently but I sure have to say that today’s biopsy was ‘best yet” (that’s if you could apply those words to having bone marrow aspirated from the hip.) Jay, the nurse, had the IV line in without any problems, gave me an extra dose of Ativan ahead of the procedure and gave me the full dose of Versed.

I still think I have a tolerance to Versed, the drug used for “conscious sedation”. Jay says that most patients float in and out of awareness, usually not remembering anything. For me the experience is usually being completely aware of what is going on, being able to feel everything and not being able to react to it. A strange and helpless feeling.

Like I’ve said before the Lidocaine injections are the worst. The numbing is done in several stages so that the area is numbed all the way down to the bone. Then the biopsy needle is inserted and forced through the bone to the marrow where they aspirate and take samples. This was my fifth biopsy and by far the best. Although I still felt the pain of the procedure and squeezed Todd’s hand very tightly, I was definitely more relaxed, more talkative and even joked around and I felt calm.

After the procedure was over, I was able to rest on the exam table until Dr.V came in with my lab work. She told us everything was looking good. She ordered another injection of Aranesp which I received before leaving. She revisited how my GI discomforts had improved from the previous visit. I told her they had improved especially one specific problem. But that I was still experiencing nausea. She said she will give the Entocort a little more time and if it doesn’t clear up all of the GI discomforts she’ll add a low dose of Prednisone.

Dr. V is the sweetest physician. She is so genuine. Dr. V’s staff: Laura, the PA, the nurses and techs are such special people. I am not just one of the successful transplants to them. They know that I am also a wife and a mother to four active children and I have a life that I want to catch up to. And they want me to catch up too.

Dr. V always goes over every detail of the reports, answers any questions straight forward. And when it's good news she always has a twinkle in her eyes, the prettiest smile and a joyful laugh. I feel so blessed to have been able to see that smile and hear that laugh for almost two months now. I’ll just be waiting for the "good news" signs until she gets the biopsy results in a few days.

Day +96 “10 years and counting”

St. Patrick’s Day, Monday, March 17, 2008- Post Transplant Tests (Late Post)

Not quite the way either of us imagined spending our 10 year anniversary. It was actually planned to include sun, sand, tropical waters and no kids. A trip to paradise on hold (for at least a little while.) Instead we spent the ENTIRE day sitting in doctor’s offices and waiting rooms.

But we were together and that is what I was truly grateful for. The long waits in the offices gave us time to reflect upon what a truly blessed life we have had together. A life blessed with four beautiful children who teach us more about unconditional love and forgiveness. A life filled with family and friends who teach us about charity and compassion. And, yes, a life that had to include Leukemia, long hospitals stays and a lot of waiting in waiting rooms, has been blessed. If you already didn’t know it, Todd is an amazing father, husband and friend. I think this blog site that he set up from the beginning shows many of the qualities that I saw in him the first time we met. I guess I’ll have to share our story another time. But for now I will say “I love you, Todd. You are my eternal companion.”

All of our waiting in waiting rooms for two tests, that together totaled 1 hour and 30 minutes, had us gone all day from 9-5. The good news from all the waiting is that the Pulmonary Function test and the MUGA (heart) test show from initial results that I passed. Yea me! In other words, my lung and heart functions were not damaged during the transplant procedure. Dr. V will have the finally results when I see her on Thursday—the BIG day—Bone Marrow Biopsy.

Please keep me in your prayers. Please pray that the procedure goes well and that no cancer cells are detected and that Tracy’s cells continue to be successful and that my blood cells are still no longer present. My testimony of prayer has only been strengthened by all of you: our families, friends, neighbors, community and many of whom were strangers and now have become friends.

I hope that 10 years from now you all are still keeping up with us and that the words always include “Cancer FREE!”

Day 92 - Lucky Number 8

Clinic Visit - March 13, 2008 (Late Post)

Did I say I could handle traditional blood draws? No problem? Well, maybe I spoke too soon. Today’s clinic visit started at the lab to have my blood drawn by a phlebotomist (yea me, no neostar!). I gave him a fair warning that I have bad veins—they like to move and roll. I am generally mentally prepared to be stuck by a needle at least three times before a successful blood draw. And, at 9:20 in the morning, these guys are ready to go- very friendly, easy going and confident. Which is always a good sign.

In the end, and 8 stab wounds later, these guys were still very friendly, but they were very apologetic and their confidence was somewhat shaken. I had to keep reassuring them that I was alright and that they could try again. After the second attempt, they had almost been successful, collecting 4 of the 12 tubes needed before the vein collapsed. Then came attempts 3 thru 8, with 8 being successful. I think they took a few extra tubes for good measure!

Finally, after a successful blood collection, I went upstairs to have a chest x-ray done. I was in and out pretty quickly. I don’t know if I mentioned this before but I get a monthly chest x-ray as standard post-transplant protocol. As always, initial indications are that my lungs look clear.

My vitals are improving with each visit. My blood pressure is in normal range and Dr.V has taken me of Atenolol (beta-blocker-the medication that contributed to my bouts of fatigue)and reduced the dosage of Norvasc (hypertension medication.) It’s always nice being taken off a medication. Unfortunately, as one medication was taken away, another was added.

The past week and a half, I’ve been feeling slightly nauseous – like butterflies taking flight in my stomach from time to time – and having some other GI discomforts. Dr. V. was concerned that this may be a mild flare-up of GVHD, so she prescribed a ‘topical’ steroid, Entocort, for the GI tract. It’s not what you normally would think of as ‘topical,’ but apparently it’s only meant to treat the lining of my GI tract and not to be absorbed into the blood stream. Hopefully, that means much fewer side effects than the steroid prednisone.

Dr. V is still very pleased with my progress and said that my labs looked good. She pointed out the increase in my RBC production and told us the Aranesp was doing its job. She will give me another injection on the 20th.

Next week is full of tests. I will have follow-up tests that will compare heart (MUGA) and lung (Pulmonary) functions to my pre-transplant condition. The big day is Thursday, 20th, when I will have a bone marrow biopsy.

Day 83 "Tube Free!" and Day 85 "Crazy Day!" (edited version 2)

Day +83 “Tube Free!”

Tuesday, March 4th (Late Post)

Today started with an early morning visit to the BMT to have one last blood draw using the Neostar before it was removed. We then headed over for our 9:30am appointment at the doctor’s office to have the catheter removed. In what was to be a 15minute procedure….I hate waiting. It never matters what time the appointment is and if you get there 20 minutes early or 10 minutes late. They make you wait. Sorry for venting my frustrations but time, my time, the time I can spend with my family and doing things that are important to me, it has a different meaning to me now. Anyway…

The procedure itself was short and relatively pain free (like I said before, it’s the Lidocaine shots that are the worst part and they were.) The PA, Maria, that preformed it was the same PA that was there assisting when it was inserted three months ago. I’m never quite sure if I want to be “talked through” any surgical procedure (and they talk through every time regardless) but she was especially sensitive to my anxiety. From prep time, removal and clean up the whole thing lasted 15 minutes. She left us with care instructions and we headed back over to the BMT for lab results and a meeting with Dr. V.

We were taken back to an exam room and given a copy of my lab report. And we waited. For over an hour. Finally, Laura, the PA, came in to discuss the results. Everything looked pretty good, except that I’m still anemic. My counts dropped again since my last blood draw a week and a half earlier. Again they wanted to give me a Procrit injection, but told us our insurance company would not approve it. This was interesting, because our insurance company said they had no record of denying its authorization. So, now I’m looking at six hours of blood transfusion on Thursday. Go figure- the day I get the Neostar out I find out that I need my first blood transfusion since my last hospital stay on Jan. 17. My only hope is it helps me get over the utter fatigue I’ve been feeling recently.

Day + 85 "Crazy Day!" (Late Post)

Thursday, March 6th

It turns out that the clinic never really asked for authorization from the insurance company. We’re still not exactly sure what happened, but, Dr. V. sent this message to us Wednesday evening:
“the procrit ‘police’ were using medicaid guidelines for ALL pts and included Courtney in it. The people who police the procrit are not transplant savvy....anyway, we have it squared away and Courtney is NOW APPROVED for the procrit and she can get it in clinic tomorrow instead of the transfusion.” Kinda frustrating, but at least it’s cleared. An interesting thing our insurance case manager told us was that Procrit is in fact considered experimental for patients with AML, but went on to say that this doesn’t apply to me because I’m in remission and NOT leukemic. Nicely stated.

Anyway, Dr. V ended up giving me an injection of Aranesp – like Procrit but supposedly more effective and longer lasting. I’ll take a 2 second injection over a 6 hour infusion any day. Especially when I no longer have the easy access catheter for the blood, and, historically, they have a hard time starting IV’s on me.

What made this so frustrating was that two weeks ago when my blood counts started dropping I could have received the injection but by not receiving it sooner I actually became symptomatic with anemia. So it's kind of like feeling really tired but adding butt kicking fatigue on top of it. But what mattered in the end is that I got my injection and should feel improvement over the next few days. And I’ll return to the clinic on Thursday for follow-up lab work.

Unfortunately, Todd had to stay home with Emma and Aidan because our sitter had a sick child of her own. Fortunately, Melissa was able to come with me and keep me company. It was a nice visit, I haven't hung out with her in a while and we were VERY fortunate to return home early enough to avoid having to drive in the snow. YES, SNOW!! Way more than I ever would have expected (4-5 inches)– in Texas – in March!



I’m sorry I got so behind. I promise I’m trying to catch up. Thanks for caring enough to follow our journey.

Day+78 “No Clinic Visit!”

Today marks the first day that I have not had a clinic visit during a week in a long time. It was nice in the sense that I didn’t have to get up early. I really struggle getting up most mornings (I have never been much of a morning person but now it is definitely much more difficult.) We definitely didn’t miss the long drive into Dallas. And yet strangely, I felt some what anxious not having a weekly exam and lab reports that tell me that I really am doing well even at times when I struggle with intense periods of fatigue that knock me on my tail. But the good news is that I really do feel better. Better than I felt at diagnosis and through induction. Improving everyday. Now for even better news!

I am scheduled to have my Neostar removed this coming Tuesday, March 4th. Exactly three months after having it put it. Wow! The Neostar has been invaluable during the time of treatment (chemotherapy, transplant and recovery). It has saved me from countless needle sticks, made it possible to receive medications, blood products and fluids all at the same time and provided a sterile environment for these procedures. But now it’s time to part with it. I am no way saddened by this (who would miss a catheter with three large ports protruding from their chest) but it definitely is a huge milestone. The procedure to remove it is much simpler than inserting it. But it does require a large needle and an injection of Lidocaine. In most procedures, it’s the Lidocaine shot that is the worst part! Considering everything I have endured the past five months Tuesday should be a breeze.

I’ll be seeing Dr.V. after the Neostar is removed. At her office I will have my blood draw the old fashion way! I have never had great veins for needle sticks (a family trait-the veins like to move and roll) and usually take two sticks to get blood. Again, I think I can handle traditional blood draws.

This is also the first week that I am on my own “officially.” Todd’s mom, Artie, returned to San Antonio this past Saturday. Boy, did I cry to Todd at night how worried I was to be on my own. Todd, my positive support, reassured me that I would get the help I needed and not to worry. Artie has been such a tremendous help over the course of these past five months. I kept telling her she had to stay until my hair was an inch long! We laughed and I gave her a hug. I really hope she knows how much we appreciate everything she has done. She’ll be back over Spring Break when the rest of the Flynn’s will be visiting us. We are really looking forward to seeing every one again.

So, how did my first week go with out Artie around? Well, I’ve managed and survived but only because some excellent friends of mine made it easier for me. I hadn’t realized myself exactly what my limitations were. And I am so grateful for friends that did recognize them and for a husband that did his best to be home by 5. It’s all “baby steps” for me and to know when to ask for help when I need it. Sometimes I feel frustrated not just jumping back into all of my life. Then I begin to understand that it’s not like going back to “normal” but that it will be a “new normal.” I haven’t quite figured out what that will be or even how long it will take to get there. But I do know that I am not alone in figuring it out. Again, THANK YOU to my family, friends, neighbors and new friends for supporting me through this time.

Day +71(Feb.21st)-“Exactly five months since I was diagnosed…”

A couple of days ago I had a great visit from my friend Crys and her beautiful children, Alexa and Zack. Our kids had a blast playing together. It was such pure joy to hear them laughing and see them running around. I really enjoyed my visit with Crys. We sat and swapped cancer stories. Not that cancer stories make the best stories, but it is interesting sharing the different perspectives—as a parent with cancer and as a parent with a child who has cancer. Some of the things we have learned are that cancer SUCKS and it changes you forever. Five months, while they’ve gone by fast, have seemed like an eternity. I can’t imagine how hard it would be to endure it for over two years as her family has had to. Alexa is such a fierce fighter, just like her mom. I’ve learned so much from the way they’ve fought and persevered. They are such an inspiration of LIFE and LOVE. Please continue to pray for Alexa and her family. I know first hand just how valuable the prayers are.

Thursday, the 21st, we had our weekly visit to the clinic. I know we keep saying that every visit has been the best but really today’s visit was quite likely THE best. And could have been even better if not for a little hold up by the insurance company.

I’m officially off the Prednisone (a steroid-used to prevent GVHD). Yeah me! Hopefully this means that better nights are ahead and I can actually start sleeping again. Something for which I’ve been yearning for over a month now. We’re praying that the GVHD doesn’t flare up in the coming weeks. That would be a significant milestone—not developing acute GVHD in the first 100 days post-transplant. An interesting comment on the Prednisone: over the next two to three weeks I will begin to see a more significant development of my muscles and less aches and pains as they begin to repair and rebuild. Steroids are so weird! They made me eat non-stop, kept me awake, suppressed my immunity even more than it had been by Prograf, and slowed muscle development. But ultimately controlled the GVHD. Crazy!

My CBC’s are still pretty good with the exception that my RBC, HGB and HCT are all a little low. I’ve never quite gotten those into the normal range, but since they dropped a little since the last visit, Dr. V wanted to give me a Procrit shot. But alas, our insurance company, whom had already approved several Precrit shots, denied the injection today. The clinic said it may take 90 days to gain approval. This could be sped up by us calling and bugging them. Most of the time this tactic works. In the meantime, I just have to hope that my body naturally increases my red blood cell counts. Dr. V said the low counts are most likely due to a couple of my meds, so she’s not worried. It’s just that having more red blood cells could help me to have more energy. All I’m thinking is that I need more sleep! Chasing those Zzzzzs…. Another insightful piece of information: the beta-blocker, the one I take with the blood pressure medication, may also be a culprit in my afternoon fatigue bouts. Dr. V’s solution: take the beta-blocker later in the day so when I am ready for bed that fatigue just might be enough to send me to sleep! Interesting. Dr. V said that this kind of fatigue is especially common in women who take this medication. Oh, well, better late then never. Still might be useful.

She also said that I could have my Neostar scheduled for removal. This will take place either March 4th or 11th. I’m pulling for the 4th as I’m ready for these chest tubes to be gone!! They aren’t too annoying, but they’re a constant reminder of everything I’ve had to go through these past 5 months (exactly 5 months today since diagnosis). And I’d just assume not be reminded. My bald head is enough. Which, by the way, is less and less bald by the day. In this picture taken one week from last week's, you can see even more hair!

I wanted to announce that today I had to PLUCK a few stray eyebrow hairs! GASP! It almost seemed like a sin to remove one strand of hair from my head! But, and I know the girls will understand, there is nothing more annoying that having a stray eyebrow hair staring at you in the mirror! But what an exciting milestone! I’ll be back to regular plucking in no time!


Also, I don’t have to go to the clinic next week!! If all goes well, next week will be the first week since the last week of August that I won’t see a doctor!! That’s crazy!! Not that I mind the doctors, after all they’ve helped save my life. It’s just that I could use a break, and this is a giant leap towards returning to a “normal” life. Ahh, normal. If only I could remember what that was like….

Day+65 - Thursday’s Clinic Visit

Best clinic visit! Great news! Yea ME! CBC results all normal, metabolic panels all normal, blood pressure is finally in normal range (first time in almost a month), weight maintaining and gaining.

No new prescriptions! Predisone reduced from 20mg/day to 10 mg/day. Next week, it should reduce to 5mg/day or every other. And when Dr.V. has me completely off, she will monitor my progress for about a week or so. If I continue doing well she will arrange to have my Neostar removed. Yea! Other good news - she stopped the mycamine (anti-fungal I.V. infussion) today! This is the first time since Consolidation (Oct. 29th) that I am not taking mycamine! She did increase the Diflucan (Fluconazole-oral anti-fungal) from 100mg/day to 200mg/day. So, no worries. All my bases are covered with oral anti-biotic, anti-viral and anti-fungal medications. So, I'll be going to clinic every other week after I am off the steroid and won’t have the Neostar anymore! I can handle a blood draw the old fashion way. Definitely! No mycamine, no steriods and no Neostar! Isn't that wonderful!

Better sleep will come soon as my steroid dose is lowered. My hair is growing back! Every day’s a good a hair day when it’s growing back. Especially when it’s still too short to be messy. ; )

Funniest item I had at the hospital during the stem cell transplant: a hair dryer! I know you’re thinking “why would she need a hair dryer? She doesn’t have hair.” But having a hair dryer to warm up my caps and scarves was especially nice plus some nights I would have the worst “night sweats” and wake shivering with a wet night cap. The hair dryer came in handy. Thanks, Dad.

Nice surprise this week: Christi Taylor, a girl from our Church stopped by to visit. I hadn’t officially met her yet because I was diagnosed around the time she and her family moved into the area. But she was such a sweetheart and sent me an e-mail early on during treatment. I e-mailed back and told her that I would look forward to meeting her in 2008-cancer free! So she gave me call and asked if she could come by for a short visit. I really enjoyed our visit. So, to all you girls out there who aren’t sure about coming by to visit just need to give me a call!

Here’s a slideshow “The story of my hair…”

Day + 61 - “I still don’t believe it…”

O.K. On behalf of my defense, I started this blog entry on day +55. Today is day+61. I have never in my entire life been at loss for words. I have sat here at the computer, staring at the screen for hours, trying to put into words some of my experiences from the past 5 months. What I found was there were just too many of them. It really is quite overwhelming to reflect on everything that has happened. I edited and removed half of it because I couldn't find the right words and some it just didn’t make sense (a most definite result of chemo brain--it is real.) Maybe with time, sharing those experiences will get easier. Anyway, this is as far as I got….

Last night(Day +55), I was standing in front of the bathroom mirror (fully dressed), my arms and shoulders hanging down, doing a pretty good job at making myself look as pathetic as possible, when Todd comes in. I say “I still don’t believe it.” “What?” he says. Using both hands, pointing at my head, for a more dramatic effect, I say “This. I am bald. And I don’t have eyebrows or eyelashes. Look at me.” “I am. You’re beautiful,” he says and kisses my bald head. I still don’t believe it. (I love you, Todd.)

Sept. 21st--After I was admitted to the E.R. at Harris Methodist, I was put in a hospital gown, given a mask to wear, taken back to a bed in a curtained area, where nurses monitored vitals, asked for my medical history and worked on getting an I.V. started. I looked at the clock. 2 pm. I turn to Todd and tell him he has to call Melissa (she already had Aidan.) He has to tell her. He has to call one of our best friends and tell her that I have cancer and ask her to take care of our children. School was going to be out soon. I told him he had to ask her to call Cheryl and have her bring Emma home from pre-school to her [Melissa’s] house. I told him to ask her to call the elementary school, tell them that Kylie and Miranda needed to get off the bus with her girls. I told him you have to tell her, you have to ask her. Tears just stream down my face when Todd comes back and tells me that she didn’t hesitate. She would take care of them for as long as we needed and do whatever we needed. And she (and Dan) did. I still don’t believe it.

I still don’t believe it… but apparently, during induction therapy, on the evening (Oct. 15th) my sister Tracy was arriving from Italy to stay with me at the hospital for a week, I was definitely anticipating a visitor. Or I should say visitors. My mom was staying with me when Todd came for the evening to visit. No, it wasn’t Todd that I was waiting for. I asked my mom if it was o.k. to tell Todd who was coming to visit me. She said yes, I could tell him. “Really?! I can tell him?” She just smiled and said “yes.” I turned and looked at Todd and said “Paula Abdul and Michael Jackson are coming here to visit me!” Who?! Where did that come from?!

When Tracy finally arrived, I insisted that she wear a pair of my pajamas (because of course she came all the way from Italy and didn’t bring anything with her) and told her that she could sleep on the top bunk. I don’t believe the hospital had rooms with bunk beds.

Today is Day +61 from the stem cell transplant. The engraftment was successful. Tracy’s donor cells have officially taken over and are producing normal, healthy, leukemia FREE blood cells! My bone marrow biopsy results show that there are no cancer cells detected. I am home with my family. I have been supported and uplifted by family, friends, neighbors and even complete strangers throughout this trial. Each day brings me closer to the time when I can use the word “cured.” I still don’t believe it.

D + 58 - More milestones

Hi my name is Todd and it’s been 15 days since my last posting. I have to apologize. With Courtney’s increase in energy and alertness and overall improvement, I figured she would takeover doing her own updates. After all, who knows what’s going on better than her? But alas, she’s saying that her mental acuity isn’t quite there yet. She’s even blaming it on chemo brain. But I don’t think she can use that excuse any more, since hair growth is a good sign that the chemo has all but worn off.

That’s right, as of Saturday, February 2nd, we officially found new hair growth on Courtney’s head! What a great milestone! Saturday also marked the first day since all this began that her energy level was greater than mine. (I was feeling a little under the weather.) It’s amazing the improvement she’s made over the past three weeks.

Since her last discharge from the hospital, her greatest battle has been with insomnia. This is likely a side effect of the steroid, prednisone, that she’s taking to prevent GVHD from flaring up. She’s tried just about every form of legal sleeping medication known to man (not together thankfully). The last one, Lunesta, she tried for the first time the other night. Just as she was taking it, I was reading an online forum where people had posted various comments about the efficacy of Lunesta. I chuckled out loud as I read comment after comment about the awful taste Lunesta left in peoples’ mouths. My favorite was the one that described it tasting like a herd of wild animals nesting in their mouth. Hearing my laughter, Courtney asked what was so funny. Not wanting to give her any preconceived notions about the new drug she was taking, I quickly made up a story. Needless to say, about thirty minuets later Courtney was climbing out of bed exclaiming that she had the worst taste in her mouth. I had to apologize for laughing at her expense. The worst part was that it did nothing to improve her night’s sleep. Sorry, Court.

Fortunately, her nights have slowly improved through the course of the last two weeks. It’s helped that her prednisone dose has been decreased by 10mg with each week’s visit to the clinic. After starting at 50mg, she’s now down to 20. In two weeks, barring a GVHD flare up, she’ll be done with the prednisone altogether. During Thursday’s visit to the clinic, Dr. V mentioned that the completion of the prednisone would also mean the completion of her Mycamine. Mycamine is the broad spectrum anti-fungal medication that Courtney receives every night via her Neostar catheter. Anyway, since she is no longer receiving blood products, there are two remaining purposes for the Neostar: blood draws and the Mycamine. In two weeks, the Mycamine will be complete and Courtney’s blood draws will go from being weekly to every other week. SO, if she’s willing to put up with a needle stick every other week, she can opt to have her Neostar removed!!

While the Neostar has been a great blessing, as it has saved Courtney from countless needle sticks, she’s more than ready to have it taken out. She can’t wait to be able to take a normal shower without the “taping up” ritual and without the worry of getting it wet. The PICC line in her arm was much easier to cover and it only took us three days to figure out how to cover it up properly for a shower so it wouldn’t get wet. In contrast, it took us almost two weeks to figure out a decent way to cover up the Neostar, and we’re still trying ways to improve it (she had it placed back on December 3rd). So you can understand the excitement she felt when she was told she could likely have it removed in two weeks! This would put the removal around D+71, much sooner than the 90 to 100 day mark we anticipated.

And just when you thought there couldn’t possibly be more good news, Thursday also marked the first day since Day 0 that Courtney’s platelets were within normal range. They dropped to 132 on D+1 (normal is 140 – 440), reaching an all time low of 9 on D+9 (Dec. 21st). Thursday they were at 147!! You can cut her and she won’t bleed…as much.

With all this good news, and with our lives beginning to take on a sense of normalcy, it seems like this roller coaster ride is finally coming to an end. Unfortunately, much like a real roller coaster, this may be just the part that makes you think it’s almost over, only to throw in a couple more unexpected twists and turns. In the case of the real thing, that would mean more fun, but this has been more like the roller coaster ride from hell, and we’re ready to get off!

Saturday - Day + 52

I hope the silence on the blog hasn’t worried anyone. My apologies to everyone. Hopefully, you can all assume that “no news is good news” if the posts aren’t as frequent. But I do want to say how much each and every one of your messages, prayers and well wishes have meant to me. THANK YOU!

I guess writing my own update for the very first time was harder than I thought. I am definitely not as eloquent as Todd and I admit that our 8 year old, Kylie, has better typing skills than I do! I am one of those people who “hunt and peck” with two fingers! So, first, I thought I’d share the e-mail that I sent to our families about my clinic visit on Thursday:

Hello Family!

Don’t be too surprised that I am writing my own update! And don’t flip at the time I am writing it! It all comes with good news. The clinic visit went really well. All my counts look great and all in normal range. No procrit shot- red blood cells are good. Dr. V. reduced my steroid again (the steroid is one med that keeps me awake and throws off my sleep schedule—why I am up right now). But she did prescribe a new sleep-aid to get me through the steroid. I should be completely off in about two weeks. So, in a few weeks I will be off a lot of these meds. Great news! The steroid also has the effect of making me hungry all the time! I put almost 5 lbs. on the past week and a half! My favorites right now are bean and cheese tacos from Taco Cabana. So, every week we go to Dallas, we pick up 10 or so tacos to take home. So, to say the least, Dr. V. and her PA, Laura are thrilled. Lots of smiles today. No signs of GVHD, CMV results are negative, IGG are normal and Prograf level results I’ll get tomorrow. The sleep-aid seems to be kicking in. I feel very relaxed now…. Time to catch some Zs.

Every one is doing well. I love my time with the girls and the “beast”. Alissa has been here this week to help. It’s been fun. Todd’s working a ton so I sure miss him during the days. Kind of makes having clinic days nice because we have time together. Dr. V. said she’ll see us next Thursday! That’s all for now.


Love and miss you,

Courtney

It is hard to believe that I am half way to the big “100 day” milestone. Time has been this complete paradox. Friday, September 21st, the day I was diagnosed with Leukemia-CANCER- was devastating and time and life felt like it just stopped. Well, really only like for 10 minutes, that seemed like forever, and wiping tears from my face I told Todd “O.K. Let’s do this.” And we made the decision where to go for treatment, got up, left this oncologist’s office and headed to the hospital. I don’t remember two-thirds of that time (thanks to wonderful narcotics—I’ll share more of my thoughts on drugs another time). This was a tremendous blessing. To be spared the true concept of time. Time away from my children… but again, I’ll share those thoughts another time.

Then it wasn’t until I left Harris Methodist after completing the Induction Chemotherapy—32 days (in REMISSION!) and was home for a few days, my mind starting to come out of this “medicated head fog” that I read this blog for the first time. I was learning about my own treatment, the ups and downs, and began to understand and learn about AML, but to learn about the overwhelming love and support that was given on my behalf and my family—it was truly humbling. Another thought that I will share later—CHARITY- “the pure love of Jesus Christ” (J0hn 13:34-35).

I feel like there is so much to say. And yet again, TIME is passing and sleep medications are beginning to do their job.

I don’t suppose there was any order to my rambling tonight. Perhaps even a bit confusing. “What exactly is Courtney trying to say?!” Making some of you wonder exactly what kind of drugs the doctors have me on! Only the best!

I promise my postings will somehow unfold in a way that express what my heart has wanted to share with all of you for so long. And if I am not able to find the right words, Todd is right by my side! With love, good night!

D+43 - A good turn around

"What a difference a week makes." There have been so many times we could say that these past four months, with all the ups and downs. Unfortunately, a good portion of them have been for the worse. I so much prefer saying it after an upswing than down. This time last week Courtney was in the middle of her four night stay in the hospital. She was feeling pretty sore and achy, and still battling frequent nausea. Last Thursday night she was just receiving her last bag of Foscarnet, and was being administered about three other medications via her catheter. Flash forward to one week later and she’s in her own home, in her own bed, not hooked up to any IV bags, and more than five days removed from her last serious bout of nausea.

It’s been a really good week for Courtney. Her appetite is back full force, the nausea is all but gone, and the abdominal pain is but a distant memory. She’s had two visits to the clinic this week, Monday and today. Both of these visits were long, but rewarding as we came away with good news both times.

Monday’s visit was fairly routine, as they checked her blood levels and did a quick physical. All of her counts looked really good, and there really wasn’t much to report. The past few days she’s been up and about a little more each day. Little by little she’s been trying to do the things that she considers “normal,” i.e. go upstairs, play with the kids, help with homework, do some laundry, etc. Her biggest complaint has been fatigue and muscle soreness – no doubt caused by the fact that she’s just beginning to use muscles again that have been used sparingly the past few months. She’s been doing a good job of balancing the effort to regain her strength with getting the rest she needs to recover from those efforts.

Today’s visit went even better than Monday’s. We had a good visit with Dr. V. who was genuinely excited with Courtney’s progress and overall well-being. It had been a while since she saw Courtney smiling and not feeling miserable. She was also very pleased with the blood results, as they continue to hold steady. The best part of the day came when we asked her how many more bone marrow biopsies Courtney would need during this next year. The answer was two: one around D+100 and one more in a year! That news really made Courtney smile. We were thinking the next one would come much sooner than that and they would be much more frequent.

Dr. V also said Courtney was doing so well that she wouldn’t need to see her again until next week. Yah!! The visits aren’t bad, and they’ve been, for the most part, very useful, but they’re usually so long and somewhat tiring. So, she’s more than happy do go a few days without going to the clinic or seeing any doctors – especially if she’s feeling well enough that she doesn’t need to see any doctors. It’s just one more happy milestone that indicates she’s really on the path to recovery. A week ago this fact seemed doubtful. Now we truly know how far she’s come, and we’re grateful that it only took a week for her to turn around so dramatically.

D + 38 – Home Again

When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.

This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?

Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.

Here’s a quick recap of what transpired since Wednesday:

Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.

After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.

Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.

The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.

Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.

One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.

It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.

Day + 35 - Anything but routine

Yesterday’s short visit to the clinic has turned into a rather long trip from home. At least for Courtney anyway. After checking her lab results and seeing her platelets drop significantly, and seeing that her nausea was getting worse instead of better, they decided to admit her back into the hospital to run some tests. Dr. V said there was a chance that her symptoms and lab results could be due to Graft Versus Host Disease (GVHD). So, they wanted her to go to the hospital for a CT scan of her upper abdomen, where she’s been feeling pain the past couple of weeks, and an endoscopy to check her upper GI tract for lesions and to perform a biopsy to check for GVHD.

Her latests lab results:

Date	Platelets	RBC	HGB	HCT	WBC
1/10	65000	3.22	10.4	29.5	5.0
1/15	25000	2.58	8.2	23.8	5.5
1/16	23000	2.18	6.9	20.4	3.7

This morning Dr. V came in and shed some light on her suspicions. Apparently, the GVHD manifests itself in many ways and could be causing her to feel the way she’s been feeling lately – more nauseous and fatigued than before. She also said the drop in lab counts and the increase in nausea could be due to the Foscarnet. I asked why, if she’s been on the Foscarnet since she left the hospital, would her counts suddenly drop. She said that it can have a cumulative affect and cause symptoms and side effects after a couple weeks of being on the medication.

Her plan was to have the Esophagogastroduodenoscopy (EGD) (officially the longest word I’ve ever written or used), today and start her on a relatively low dose of steroid (prednisone) pending the results of GVHD that could take 2-3 days. Unfortunately, the doctor overseeing the procedure didn’t want to do it because her hemoglobin was too low. He said she needed to get blood beforehand. Even more unfortunate was the fact that there was no way to get blood in time to still be able to get the EGD done today. The GI doctor who visited her this morning said if it was him he would have done it today regardless. This is really frustrating because Dr. V. said that she expects Courtney to be feeling better almost immediately after getting the steroid. But now we have to wait another day before starting it.

So, after a long morning of waiting to find out when the EGD would be (she couldn’t eat until after the procedure) we finally got word that it wouldn’t actually be done today and she could eat. The rest of the day went pretty smooth as she had a nice long visit with her friend, Melissa, and had a routine CT scan. No results yet.

She did finally get her two units of blood this evening, so all should be clear for the EGD tomorrow morning. We’re hoping that if everything is good tomorrow and she’s feeling up to it, that Courtney could go back home tomorrow. Otherwise, she may be here for one more night.

We’re just hoping and praying that they find some answers and get her turned around in the right direction towards recovery. She’s really tired of feeling nausea and pain, especially when they prevent her from getting out of bed. So, while the visit to the doctor didn’t quite go as expected, we know that she’s back in the hospital for a good reason – to help get her back to her routine as quickly as possible.

Oh, one more thing. Aidan made a dramatic recovery at about 9:00 yesterday morning. When we left for the clinic at 8:45 he still felt warm and looked a little lethargic. Half way to the clinic my mom called to tell us that he was downstairs (he hadn't come down once on Monday) begging for food and acting as if he'd never been sick at all. He's been himself ever since. Thanks again for the prayers.