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taken 8/4/07

Courtney and her kids

Courtney and her kids
taken 8/4/07

Monday, March 31, 2008

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:





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.

Saturday, March 29, 2008

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.

Tuesday, March 25, 2008

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.

Wednesday, March 19, 2008

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!”

Tuesday, March 18, 2008

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.

Sunday, March 9, 2008

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.

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