Blog
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Tuesday, March 31, 2009 - 7:54 pm
Still Alive and Kicking
My latest counts with normal ranges in parenthesis (not too shabby eh?):
WBC 2.9 (3.5-12.5 K/uL)
RED BLOOD CELLS 3.68 (3.60-5.10 M/uL)
HEMOGLOBIN 11.2 (11.5-15.0 g/dL)
HEMATOCRIT 34.5 (34.0-46.0%)
MCV 94 (80-100 fL)
RDW, RBC 16.3 (11.9-14.3%)
PLATELETS COUNT 86 (140-400 K/uL)
NEUTROPHILS %, AUTOMATED COUNT 73 (41-81%)
LYMPHOCYTES %, AUTOMATED COUNT 23 (13-46%)
MONOS %, AUTO 3 (4-12%)
EOSINOPHILS %, AUTOMATED COUNT 0 (0-4%)
BASOPHILS %, AUTOMATED COUNT 0 (0-1%)
NEUTROPHILS, ABSOLUTE, AUTOMATED COUNT 2.1 (2.1-7.7 K/uL)First, thank you so much for your words of encouragement. I apologize for not blogging sooner. I know what it feels like to check a blog multiple times a day to see if a fellow cancer fighter has made any updates after announcing some bad news. It sucks feeling left in the dark when you are worried for a friend. Just know I immensely appreciate your love and support (and patience).
Discovering that I had relapsed just 4 days after moving back home was quite surreal and scary. After numerous tests in Seattle showed that I was cancer free, what are the odds that on the very day I was flying home to San Francisco my final blood draw at the Hutch would show 30 stinking leukemia cells?! Impeccable timing!
I really thought someone up there was playing an evil trick on me. Of course, I’m a realistic person. There’s that voice in the back of your head that reminds you could relapse any time, but that voice was getting quieter by the day as I was nearing my 100 day post transplant mark. Not only was the relapse news devastating, but I was also dealing with headaches, nausea, diarrhea, and new red spots on my skin. I felt like I had just been through the hardest battle of my life and I was absolutely exhausted. I felt like my body had failed not only me, but all of my loved ones that had put so much energy into my cancer journey. I didn’t want to drag them through all of this again.
So that’s where I was just a few weeks ago, but now that we sort of have a short term treatment plan (a.k.a. taper off the immuno suppressant meds so my new immune system can grow and do some Leukemia ass kicking), I’m doing much better. Tapering off the meds have not triggered any major GVHD. I am not taking any systemic steroids either. All of my blood counts have been pretty stable. (*I did get 3 units of blood last Wednesday, but that’s pretty much been the trend. I was also getting blood transfusions every 3 weeks or so in Seattle.) Over the past few weeks, my spots have healed, my nausea has practically disappeared, my headaches are almost gone and my energy has increased. Most importantly, I feel mentally and physically strong.
I am almost done tapering off my last immuno suppressant, Cyclosporine. In 3 weeks I will get another bone marrow biopsy to see what’s going on and we will take it from there. Many decisions will have to be made in about a month, but I am just focusing on each day as they come. Right now, I am enjoying the fantastic weather, laughing with my sister Mel, snuggling with Van, getting back massages from Mom, playing board games with friends, watching Vietnamese kungfu movies, and chasing Marshawn around the dog park.
Life is A-OK.
P.S. A relapse is devastating to the entire Leukemia community not only because we are sad for the patient, but also because it shows that the disease can come back. I just wanted to remind anyone who’s going through treatment, that each person’s cancer journey is different. Please don’t attach my relapse to your life. Keep the hope alive. You can totally be cured of this stupid disease. And hey, I’m still banking on nipping Leukemia in the bud too.
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Wednesday, March 18, 2009 - 2:33 am
Setback
Last week, Michelle had a bone marrow biopsy that confirmed our worst fear — another relapse. We first suspected something might be wrong two weeks ago after learning that Michelle’s last blood draw in Seattle had 30 irregular cells. We hung on to the hope that this had simply been a fluke, but I guess luck wasn’t on our side. Her marrow had 3% blasts (basically leukemic cells). The chimerism test, which attributes the source of her marrow, revealed 93% donor cells and 7% patient cells. All of Michelle’s past post-transplant chimerism tests had been 100% donor cells. What this essentially means is that the chemotherapy, radiation, and donor cells have not been able to kill all of Michelle’s original marrow cells. Now, they’re growing again and some are leukemic.
It’s been difficult telling family the past few days, and I’ve struggled when thinking about how i was going to write this post. There’s just no good way to tell a father that his little girl’s cancer is back. I love Michelle with all my heart, but I just can’t imagine the pain in her parents’ hearts. Ultimately though, I’ve taken a very matter-of-fact approach because that is how i’ve learned to respond to and process these just plain [insert negative adjective of the day] events in our lives the past two years. You have to accept the situation and just focus on the things you have some sort of control over. In our case, it’s what we can do today and tomorrow to help Michelle get better.
In terms of next steps, we don’t have a lot of concrete information to provide because we really don’t have much. We simply have very little visibility to what lays ahead. For now, we are reducing one of Michelle’s immuno-suppressants / anti-GVHD medications mycophenolate / Cellcept with the hope that Michelle’s donor cells (being suppressed less) will attack Michelle’s leukemic cells. After two weeks, Michelle will have another bone marrow biopsy, and these results will dictate our next set of actions. This will likely mean some sort of TBD chemotherapy if there is still some residual disease. Whether we look at another transplant or at clinical trial drugs down the road is also TBD. We are also unsure whether we will be staying in the bay area or heading back to Seattle.
So we really don’t know much. I’ve had to learn to be comfortable with this the past week. It’s challenging for someone who likes to have data and opinions. Ideally, we would know what options we have, all the pros and cons, and know where we’re headed. I know it would make that sick feeling in my stomach go away. What we do know though is that at every step of the way up to this point, we’ve never held back on treatment options and have maximized our chances of eradicating this disease. I guess there’s two ways to interpret this, but at the very least, I don’t look back with any regrets and can sit here comfortable with our past decisions.
Michelle has been dealing well with this latest setback. Don’t get me wrong…we certainly have our share of tear-filled talks late at night or early in the morning. There is a calm acceptance of this relapse, but there is no loss of hope. She continues to think positively. Right now, that energy is aimed at her donor / stem cells killing her own marrow cells. Michelle is also preoccupied with fighting nausea all day and has developed some increasingly intense headaches. She has been sleeping most of the day — partly because of reduced energy levels and also because it makes the days go by more easily.
We’ll provide details and updates when we get them. This latest setback would explain why we’ve been a little MIA on the blog front. This would also apply to those in more personal contact with us that may be wondering why we haven’t been so good at picking up the phone or returning messages.
I do have one small request. Because Michelle is very physically and emotionally tired, I ask that everyone please refrain from calling Michelle’s cell but rather send any messages through blog comments, email, text messages, FB, etc. She may not respond right away, but she will certainly get them. If you need to hear a human voice, call me and i’ll do my best to fill in for her.
Thank you for your continued support.
Van
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Sunday, March 15, 2009 - 10:11 am
Please support our friends and a great cause
Over the last couple of years, we’ve had the opportunity to meet members of and learn more about The Leukemia & Lymphoma Society (LLS)
and Team in Training (TNT). LLS’s mission is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. One of their fundraising vehicles is Team in Training – a group of over 30,000 runners, walkers, cyclists, hikers and triathletes who participate all over the world in marathons, triathlons, hiking adventures on behalf of LLS.Two of our friends are part of the TNT and have dedicated their races to Michelle. They are training hard and fundraising for their upcoming races so please check out Jenn’s page and Victoria’s page and support their efforts.
About the cause and your contributions:
* Every five minutes, someone in the United States learns that he or she has leukemia, Hodgkin or non-Hodgkin lymphoma or myeloma.
* LLS research has helped increase the survival rate of Leukemia from 14% in 1963 to over 50% today.
* Hodgkin lymphoma is now considered one of the most curable forms of cancer, thanks to medical advancements in radiation and chemotherapy.
* LLS has supported more than $600 million in research since 1949
* Over 75% of your money will go to medical research (stuff like the development of Gleevec), advocacy, education and financial aid for patients. The remaining money goes back into the growth and marketing of Team in Training, which is LLS’s major fundraising engine. -
Saturday, March 7, 2009 - 1:41 pm
Gastrointestinal (GI) GVHD
For the past two weeks, Michelle has had stomach pains which started as stomach rumblings but have progressively gotten worse. This has made it tough to be active, eat, and keep her food down. Our doctors believe that it is GI Graft-vs-Host-Disease since Michelle recently stopped taking some anti-GVHD meds a few weeks ago, so she’s added some meds to see if it’ll get better. So far, there hasn’t been much improvement. She is going to start taking an additional steroid today, so we’re hoping that helps.
Because of this, Michelle’s days have been fairly slow and uneventful. She stays in bed most of the day (she finds that laying on her right side helps) so she keeps herself busy on her iphone reading wedding and food blogs and watching tv. When she’s feeling good, we try to get some air and go for walks with Marshawn.
Hopefully, we have a better update in a few days.
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Thursday, February 26, 2009 - 9:11 pm
Home at Last
We are back home safe and sound. We’re in the east bay for now and will settle back into SF over the weekend. It feels good to be back…almost as if we never left. It feels comfortable and right.
Michelle’s flight went well and the drive down from Seattle went smoothly. Luckily, we left last night just as it started to snow (Seattle was shut down by this morning from the ice/snow). As an added bonus, there were no flying rocks to contend with so my car made it back in one piece.
When we reached home this morning, the bay area welcomed us with a rainbow. After leaving all the cold/rain/snow behind, I thought this was a fitting end to our journey. I noticed that it’s really green here thanks to all the rain the past month. It’s definitely gorgeous here compared to Seattle. It even felt warm in the afternoon. To take advantage, Melanie and I went on a 8 mile run and Michelle took Marshawn for a nice walk.
Thanks everyone for all the nice message, emails, and calls. We’re going to take it really easy the next couple of months but hope to see many of you soon.
