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!