Notes From Supergirl

My Diary from the Trenches

Day 272


I know this will sound strange, but I actually had a great day at the hospital today. I was in and out in under 2 hours and my blood results were really good! I think the key is to go there at 7 am because when I was leaving, they were back to standing room only. I’m happy to get up at the crack of dawn to avoid waiting with the masses any day.

As for the blood work, my white and red counts are still normal. The white count has dropped to 4.2, but this is still an excellent number and still within the normal range. My platelets did drop to 32,000 as I was expecting, but my doctor said that this is the same time in the last round that I reached my lowest point. So if I am lucky, this may be the bottom and my numbers will start to come up next week. Additionally, if I make it through without my platelets dropping below 20,000, I won’t need any transfusions this time. I go back on Thursday for another check. I am trying to be really optimistic about this. Having my white counts stay normal is making it easy – for a wonderful change!!!

Day 266


I went for a blood check yesterday and my counts are starting to drop but didn’t nose dive like the last time. My white count is still well within normal (5.2) and my platelets are still over 80,000. I can only assume that having me start this round with numbers that were so much higher than what I started with last time will help to keep things from going so low. I also got the reduced dose, so that too should help. The good news is that I don’t have to go back until next Monday. I’m keeping optimistic that things will be a little smoother this time. I know it sounds strange but I’m also looking forward to my next bone marrow biopsy in March. I haven’t had a biopsy since late November/early December and I’m eager to have another just to assure that I’m still in remission. With my counts the way they are, I’m going to assume everything is okay. But there is nothing like having science confirm it!

I’m really busy with work, which is a great thing. Unfortunately hospital visits and snow days keep slowing me down. I am really hoping that spring arrives early and we can finally get these kids back to school! I want to try to get in some time for myself to go back to yoga and do other things besides sit in waiting rooms. Speaking of waiting rooms, yesterday was standing room only in the cancer center. I counted and there were 56 people there waiting – completely insane. I realize some were spouses or friends of patients, but still. It’s crazy to see that many people waiting for chemo or visits with doctors. I try to stay positive when I’m there, but it is a little depressing to be crammed in there with so many people, most of whom are twice (or more) my age.

I don’t have much else to report today. But before jumping off I must thank my far away college friend Stephanie for sending me one of the most awesome gifts ever (for me anyways). She sent me a copy of the U2 360 Tour at the Rose Bowl and both the kids and I had a blast watching it. U2 is my all-time favorite band and I missed the concert last year due to everything going on. It was great to at least see it on DVD – and hopefully I’ll make it to one of their stops this summer. Thanks Steph!!! My kids are now die-hard fans too :)

Have a great week everyone.

Day 261


Well the excellent news is that my counts finally came up! On Monday, Valentine’s Day, I found out my platelets made it up to 114,000 and white count was up to 7.2. That’s the healthiest I have been in well over a year. So, congrats to me for healing … now back to chemo. Literally, within the hour I was hooked back up to my IV for the next dose. This time I am only receiving 3 days (doses) instead of 4 days in hopes that my counts will not drop so low this time and they will recover more quickly.

Although it was AWESOME not to be going to the hospital every week for a little while, I am glad to be back on the trial. I just don’t want to leave any stone unturned. And I’m keeping my fingers and toes crossed that I get through this round much better than I did the last one.

I’ve been sticking to a mostly vegetarian diet the last 3 weeks now. It’s going well, but I do find myself quite hungry. I am proud of myself for staying off of coffee and substituting two healthy cups of green tea daily. Oh, I haven’t given up fish so I’ve inhaled quite a bit of wild salmon and healthfully harvested shrimp in the last few weeks. I’ve lightened the amount of dairy I’m eating (I didn’t each much before) but I’m also not beating myself up when I want a piece of cheese on a sandwich or a really, rich, creamy cup of hot cocoa. Life is short and I’ll do the best I can do things right, but I refuse to sacrifice too many pleasures inbetween. I know the key is to find balance. And more important than fixing my already healthy diet is to fix my stressed mind. When my mind is at ease, I will truly feel healthy. I’m getting there …

I want to send a thank you out of the Ulman Fund girls who came and visited me at chemo on Tuesday. You guys always bring a smile and such warm, inspiring stories – you rock! I also want to ask people to keep my friend Sheryl in mind. She is another young mother diagnosed with a different form of blood cancer. She had an autologous transplant that didn’t work and is back on chemo now. She’s funky and beautiful and has a great accent (she’s from South Africa) and I know she’s an amazing mother. This has been a really difficult process for her and I pray that things will start working for her. Like me, all she wants to do is get back to being a mom.

I also want to once again thank the nurses at UMMS. In all stages of this game, they have been awesome. The cancer waiting room is usually packed with older people, most of them not in the best mood. I overheard two different couples griping about the wait and then about an order getting mixed up. Yes, it SUCKS that SO MANY PEOPLE HAVE CANCER and need to be sitting in that waiting room. But those nurses work as fast as they can and treat all of us with respect, care and a smile on their face no matter how backed up they are. Just come prepared to be there a while and know that you are there to save your life. That’s not something that should be rushed through or feel inconvenient. Practice gratitude and you may see the world a little differently.

Okay, so one last thing I have to mention is that I bought an exercise trampoline a couple of weeks ago. I bought it mainly for the kids, but it turns out that “trampolining” is supposed to be one of the best exercises for cancer patients because it helps to clean out toxins from your lymphatic system. It is something about the combination of cardiovascular work and the non-impact resistance work that does the magical trick better than other forms of exercise. And I did read about this in quite a few places. I thought the workout DVD that came with it would be totally cheesy, but I have to say it has a been a great workout and I always jump off smiling and feeling really energized. I can’t say the same about my elliptical trainer. So if you’re interested in feeling like a kid again while trying to stay super healthy, check one out on Gaiam:

They’re on sale right now. And, the kids will love it too!

How Meditation May Change the Brain and Reduce Stress


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:

posted under Research and Articles | Comments Off

Day 253


Things have been quiet this week with no trips to the hospital and no blizzards keeping the kids home from school. Today is the first day I have been able to a have a full “me-day” and get back on track with organization, work and some relaxation. This past weekend was great. I got to catch up with a few friends near and far for a belated birthday celebration at Boordy. It was a lot of fun … and I let the real hair out of the occasion. For the most part, I’m hoping to be finished with the wigs. They are becoming a little bit of a pain and I feel like I’m hiding underneath them. Although I am not at all thrilled with the length or look of my hair right now, it is nice to just be me. In time it will come in and I will get more comfortable with it.

I have been a bit stressed lately though. The past few days I have had low-grade fevers (99-99.9) and I think it triggered a complete meltdown/panic attack. I assume my body is just fighting something, but as a friend pointed out, after the fevers from the summer, it is almost like PTSD. There is nothing else wrong that I am aware of. This is also coming off of a week where I tried to detox on sugar, go vegetarian, give up coffee, potty train my 2-year old and increase my exercise level (and overdose on dark chocolate to try to keep things in balance!). I suppose anyone would have a few headaches and fevers after that. I realize it was a little too much to take on at one time.

During my hospital visit last time I overhead a young man tell his nurse that his leukemia may have returned. He is 3 cycles ahead of me on the trial and I think he is younger than me. That was devastating to hear and I have had that on my mind ever since. I know that every patient in remission goes through this – I just didn’t realize how hard it would really be. I’ve been talking to friends, therapists and other types of healers and I think that all agree it is important to acknowledge our fears and self-doubts and by doing so we take away their power. So here it is …

  • I am afraid the cancer will come back.
  • I am afraid that I won’t stay strong enough.
  • I am afraid that stress will negatively affect my health.
  • I am afraid that I may not make the right decisions regarding diet, exercise or general wellness to keep this from every coming back.
  • I’m afraid I may not get to see my kids grow up.

There, I said it. Brian did an excellent job of helping me work through these fears last night, acknowledging that they are okay to have but that I can’t make them more powerful than they are. I can’t put the kind of pressure on myself to eat the perfect diet or exercise all the right ways if it is only stressing me out more in the end. There has to be balance. And the truth be told, as much as believe that diet and exercise play a role in health and wellness, I believe that love, friendship and our overall happiness play a far stronger role. That is what I need to focus on and the other things will fall in place.

As I mentioned, 2011 is my year of fearless living (ha, ha, I’m doing great so far!), but February is my month to focus on love and friendship. I’m doing my own Happiness Project, based on the book, and January was all about organization. I believe I had some successes in January and I hope to carry those through to February.

In honor of my February project, I wanted to share this poem that my friend Kelli shared with me, about the importance of loving ourselves:

Our deepest fear is not that we are inadequate.

Our deepest fear is that we are powerful beyond measure.

It is our light, not our darkness that most frightens us.

We ask ourselves, who am I to be brilliant, gorgeous,

talented and fabulous?

Actually, who are you not to be?

You are a child of God.

Your playing small doesn’t serve the world.

There is nothing enlightened about shrinking

so that other people won’t feel insecure around you.

We were born to make manifest the glory of God within us.

It is not just in some of us.  It’s in everyone.

And as we let our light shine, we unconsciously give

other people permission to do the same.

As we are liberated from our fear,

our presence automatically liberates others.

Marianne Williamson A Return to Love

One more thing before I go, as I mentioned I’m playing around with my diet right now. I’m doing a lot of research on what’s good and what’s bad for cancer. There is a lot of evidence pointing to a vegetarian/vegan diet as a way to keep the body free from cancer cells – it limits their ability to grow. A British study I came across yesterday mentions specifically, a 45% lower rate of leukemia among vegetarians that those who eat a regular diet. I’m not going to put the kind of pressure on myself to conform to one thing one way or the other but I would love to hear from any of you that have recommended readings or thoughts about this. I’m trying to make a well-educated decision about what would be best for my body and overall health.

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