Notes From Supergirl

My Diary from the Trenches

Summer Lovin’


I suppose it would seem that I gave up on the blog since it has been so long since I have written. It’s often on my mind, but I haven’t had a lot of time or anything that seemed particularly noteworthy to report until recently. My recovery has been very much the same – which is a very good thing. Overall I feel very strong and have a decent amount of energy. The stomach problems that I was dealing with through the beginning of June have settled quite a bit recently. I still wake up daily with a new blotch on my face though. I’ve learned to not care as much. For a period of time I didn’t even want to leave the house because of the blotches. Now I’ve figured out the right combination of skincare products and topical steroids that seems to make it easier to go out in public. But I am eager to see what happens to my skin when I am finally off of all of my medications. My hair is growing back and it’s not nearly as curly as last time. It’s wavy and very thick and sort of any ashy color. I wouldn’t call it gray but it’s not blond or brown either. If you know my brother, I would say it’s the same color as his hair. We look very much alike right now.

Day to day life has actually been pretty amazing, almost in an overwhelming way. Life seems to have calmed down a little. The summer has been easy and casual, calm and restful. I only have to go to the hospital every two weeks now and I am almost completely finished with one of my immune drugs. As soon as I am finished with that, my doctor plans to begin tapering down the other immune drug. Thus far, my body has responded well (KNOCK-ON-WOOD!!!). There do not seem to be any signs of graft versus host disease, which is very reassuring. I am continuing to run and bike and add other activities as I can. Since the beginning of June I have cut 6 minutes off of my 4-mile time! I’m working very hard on getting faster for Iron Girl in August and truly enjoying every second of it.

The overwhelming part of all of it is two-fold. One, I am just overjoyed with how blessed my life feels right now. I feel like I can see the other side in vivid technicolor. I often forget about cancer and other bodily ailments and just feel normal. I’ve had multiple incidents in the past few weeks that have served to remind me of how lucky I am to be here at all. First there was a news report on Rock Center describing the desperate need for bone marrow donors and the fact that so many people that are matches do not show up at all to actually make the donation. I may have blogged about this before. But watching this story and seeing that there were people who have died simply because their donor never showed or because they never found a match was beyond heart-wrenching. Not only did I have two perfect matches, but I had one who was more than willing to go through the process of giving me her bone marrow that truly saved my life. A day doesn’t go by that I am not grateful for that.

A second incident which really hit hard with me was that I had to return to the bone marrow transplant (BMT) unit at University of Maryland two weeks ago. My doctor has decided to see his patients on the unit rather than in the cancer center clinic because he was concerned about the exposure to germs with the growing population of the clinic. Thus, each week that I go to the hospital now, I will have to revisit BMT. Walking through there the first time was nearly paralyzing. If you came to visit me, you know that there are two locked doors that you must go through to enter the unit. You pass through one, wait for it to lock behind you, and then you pass through the second door. Being on the inside of the unit again felt frightening. As much as I loved my nurses and the care I received while there, it certainly felt like I was imprisoned, locked away from the outside world. In returning, on the one hand I was happy to see my nurses and show them that I’m alive and well. On the other hand, I felt horrible passing by patients who looked so sick. I wanted to stop by each one and say “I was just like you a few months ago, it will be okay.” And for some of them it will be, hopefully for all of them.

In the waiting area within the unit, you now must wait with other BMT patients who are sitting right next to you. In the cancer center, you retain a certain level of anonymity because you never know what any one patient is there for. You can guess on a few of them, but for the most part it is very private. In this new situation, it is clear that anyone sitting there waiting is a BMT patient at some point in the transplant process. My first day there, I sat with another couple where gentleman was using a walker and wearing a mask and appeared to be a patient recently out of transplant or perhaps waiting for a transplant to happen. As it turns out, he was 53 years old and has been battling lymphoma for years, as his wife told me. We began chatting and he asked when my transplant was and I said December. Their mouths nearly dropped to the floor. His transplant was in August and he had faced a very grim case of GVHD. He ended up being allergic to the immune suppression drugs that we need to take and he needed to be put on very high dose steroids. The steroids essentially wasted away his muscles, thus leaving him wheelchair bound. In recent months they had come to my doctor to help with his care and felt that he had saved this man’s life. He is now able to use to the walker and his body is beginning to heal. They were in awe of how healthy I looked and couldn’t believe how well I was doing in just 6 months since my transplant.

I was completely humbled by the encounter. I felt horrible about what the man had been going through. I didn’t know what to say and tried to downplay some of my success by simply saying that I had been blessed to have a perfect match. He responded that he, too, had had a perfect match! They were incredibly kind and said that it gave them hope that he would be that healthy soon. Later, as I walked out with his wife, she described how difficult these past three years have been for her husband and how he has two kids and it all felt so unfair. I completely understood.

When I was finishing up my appointment, my nurse told me that the couple had commented on how nice it was too meet me and what an inspiration I was to them. I just began to cry. All I could think about was how petty I have been to feel bad about my hair or my skin these past few months. How often I have lost sight of the big picture and focused on superficial things that I know don’t matter. I am alive and that’s all that matters. And for whatever reason, I have been given this gift and this opportunity to be here a while longer (hopefully a long, long while!) and I should never lose sight of that.

There have been a couple of other things that have come up since then that have further made it clear to me how beautiful my life is and how lucky I am. I don’t want it to sound as if I haven’t been grateful this entire time because I have. As I said, I feel like everyday I see a miracle or experience a miracle. But when the universe seems to be sending you neon, flashing signs as a reminder of my good fortune, that is where I almost have to stop and catch my breath.

True to old patterns, I often let these moments of joy become tainted with fear – the fear of when will this all go away? I think, “this can’t last forever, right?” “When will the shoe drop?” I even had a dream a week or so ago about being told I needed to go through chemo again and I woke up in a cold sweat after saying absolutely not!

It will be a long time, a few years, before I am considered “cured.” I pray I make it to that point. I feel nothing but optimism about it, but there is that occasional twinge that pops up to remind me that nothing is a guarantee. But I also recognize that it is a waste of time and energy to live with fear and that life is short regardless of cancer. But some days, I admit, I have to push myself a little harder to fight the fear. I look forward to that feeling going away at some point.

In other great news, I have been spending a lot of time working on things for Team Inspiration. I am close to launching their new website which I couldn’t be more excited about. I will be sure to share it here when it goes live. I have also been busy working on other projects when the kids are in camp. And I actually made the time to read an entire book and get myself back to book club. The book was wonderful and I highly recommend it: Shelter Me by Juliette Fay. What I’ve realized is that you can make time for the things you want to do. We often make the excuse that we don’t have enough time for things, but we can make time for things if they are important to us. Sometimes it means getting up at 5 am or going to bed at 1 and other times it just means being more efficient. For me it means all three, but I’m happier when I can fit things in and do the things I really enjoy.

I go back to the doctor this week and am curious about who I will see if the waiting room. Rather than dread it, I’m going to try to look forward to it and remind myself how happy it made me to see patients who were thriving when I was in-patient myself. The greatest gift when I was there was to meet survivors who were living normal, healthy, happy lives. They were my inspiration.

3 Comments to

“Summer Lovin’”

  1. Avatar July 22nd, 2012 at 2:11 am Chip Says:

    Jess -

    It sure is nice to read what you’ve written and at the end realize I’m smiling right along with you. I am glad you are experiencing some serious joy to counter all of that misery you went through.


  2. Avatar July 23rd, 2012 at 8:31 pm Jess Says:

    Thank you Chip :)

  3. Avatar August 1st, 2012 at 12:55 pm Meredith Says:

    So totally impressed that you have cut 6 minutes off your 4-mile run time! I am at 3 miles and can’t imagine shaving that much time off. I am a S L O W runner! I am just happy to be making it 3 miles!