Notes From Supergirl

My Diary from the Trenches
Browsing Research and Articles

Day 335

May2

I know, it’s been quite a long time since I’ve written. As usual, that’s good news because it means I’m busy living life. I am on week 6 of my third round of the clinical trial and I have a bone marrow biopsy on Thursday. This will be the first one since November. I know that everything should be fine, but I’m still a little nervous. My body has responded well to this round of the trial. My last blood check showed my platelets over 110,000! My white count should be coming up this week. I tend to be neutropenic the 4th week of the trial and by the start of the 7th week, it is closer to normal. The count continues to come up the week that they are giving me chemo and then starts dropping again around week 3. Next week I should have chemo again, which will be the start of round 4 and officially the half-way mark! Only 4 cycles left after that.

I have been feeling pretty great overall. Most importantly, aside from my hair (which I hate!) I feel NORMAL. I have been running 2-3 miles twice a week, weight training and doing hot yoga. Things that were challenging a few weeks ago feel fluid and easier now. I still have energy lulls on the first and second week following chemo, but I feel like my body is starting to adjust to it. Mentally, I am starting to have more days that I don’t think about cancer than days that I do. Every once in a while I read an article or see a news story that reminds me how serious it is and about the fact that it can come back. I try to avoid those things, but I also know that everyone is different and I try to remain focused on the other things I plan to do with my life besides face cancer.

I actually read an incredible article today about a doctor who has virtually found a cure for another type of leukemia called CML (I have AML). CML stands for Chronic Myeloid Leukemia, where I have (had) the Acute form. In this case, the doctor was able to identify the actual genes that cause CML and develop a medicine (literally in pill form) that ultimately deleted the genes from the body so that they could no longer produce the cancerous cells that caused the disease. Like I said, the only way to describe it is “incredible.” They give the example of people being diagnosed in their 60s, now living into their 90s and dying of other issues, not the leukemia. I would happily take 30 more years of life, but hopefully much longer!!! The article is very long but worth reading if any of this is of interest to you or you know anyone affected by leukemia: http://www.smithsonianmag.com/science-nature/A-Victory-in-the-War-Against-Cancer.html. This doctor is beginning to do research to try to treat AML in the same way. I can only pray that they find a cure like this should this ever affect me in the future.

So, as you can see, reading a story like this gives me great hope but once in a while a get nervous about the idea of this suddenly coming back without warning, much the way it showed up. Although I have always considered myself a healthy person, I can also see now how unhealthy I was in so many ways before all of this. I only hope that the daily changes I work on now are what it takes to keep this away forever. I hope this doesn’t sound negative, it’s just the reality of living with the disease. It is always tucked away in the back of your mind and the trick is to keep it there.

Day 321

April18

The last two weeks have brought uneventful trips to the hospital – thank goodness. Today I am at the start of week 4 for this round and platelets are working their way up and white count is down, but all on track as far as where the numbers have gone each round prior. As Chip commented on an earlier post, it is starting to become very routine at this point and less worrisome. I’m starting to understand the changes in my body and recognize symptoms based on changes in my blood count or just as a result of being a week or two out from chemo. For example, I recognize now that the week after chemo I most definitely have some fatigue issues. I also think that I get a little jittery and tend to feel “off” when my platelets go down. This all makes sense when I think about how I felt in the months leading up to my diagnosis. As my counts come back up, most of these symptoms disappear.

I think the side effect of all of this is that I am getting a little crankier when my counts are going down now, mostly out of irritation that I know I could feel perfectly fine if they just stopped giving me medicine to make me feel this way! But I am almost half-way there and I know I would never forgive myself if I skipped out on this trial, so I am sucking it up and plowing through.

My good doctor friend often uses the term “trusting your body.” Being in remission, one of the hardest lessons is learning to trust your body and know that a headache is just a headache, a pain is usually just a pain and goes away, etc. With that in mind, I have been learning to trust my body more and it’s made an enormous difference. In the last few weeks, I have been running 2 or more miles for each run, increasing the weight and intensity of my strength-training and doing a lot more yoga. I feel strong again. I feel like it’s okay to push a little harder because my body can do it and wants to. And each time I surpass a milestone for the previous week or two, I build more confidence. I can’t say that I don’t still deal with fears and hesitations but I’ve set my mind to where I want to be and I’m learning to more quickly push aside the doubts. I even committed to running relay in IronGirl in August. It has been a dream of mine since college to do a triathlon. Although I won’t be swimming and biking, just having the opportunity to participate a year after a cancer diagnosis and while still going through chemo, makes it just as satisfying.

For those who are interested, I am really adjusting to a vegetarian a diet. My kids are doing great with it too, although I do still include meat in some of their meals. Mainly, I’m focusing on getting 7-9 servings of fruits of vegetables in daily and trying to eat a “rainbow” of foods. This has made it fun for the kids too. What we’ve discovered is that it’s not as hard as you think and your body will really feel better for it. If you commit to it, a) it becomes easier; and b) you will get addicted. I recommend giving it a try.

Lastly, I just wanted to share a link for all of my friends who are training for marathons and half-marathons in the coming months. Athleta runs an incredible blog (http://www.athleta.net) with loads of information about how to train, especially how to integrate running and yoga. I downloaded a 12-week training guide by a yogi named Sage Roundtree (my newest online ‘mentor’) that I’ve been following and loving: http://www.athleta.net/chi/wp-content/pdfs/half-marathon-training.pdf. Try to check it out.

Have a great day!

20 Anticancer Rules

April6

I just wanted to quickly share this list I found online today. One of the best books I have read throughout my entire experience is called “Anticancer” by Dr. David Servan-Schreiber. I highly recommend this for anyone who is interested simply in living a healthy lifestyle, but more importantly, doing what you can to prevent cancer (to the best of our abilities). He has a list of “20 Anticancer Rules” that provides a great summary of many of the things he discusses in his book. Aside from adding tumeric to my diet, I have been following most of these almost religiously for the past few months. Anyways, if you have a moment, it is well worth a glance: http://www.anticancerbook.com/rules.html.

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How Meditation May Change the Brain and Reduce Stress

February9

I’m doing a lot of research these days on diet, exercise, meditation and, of course, cancer. I thought I would start a new section on the blog to share some of the articles I come across. I know a lot of you have asked about meditation and a lot of you practice it. This article in the New York Times explains how a recent study actually uses MRIs to prove that continued, long-term meditation can change the brain in positive ways.

Take a look:

http://well.blogs.nytimes.com/2011/01/28/how-meditation-may-change-the-brain/

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