Notes From Supergirl

My Diary from the Trenches

Day 516


I got word yesterday that I can’t go in until December 1st or 2nd now because that is when the donor will be available. My nurse coordinator did say, in a very positive tone, that this could still work as far as getting me home for Christmas because the average time in the hospital is 25-35 days. I went back and checked how long I was in for the first transplant and it turns out that I came home on day 24! Clearly, being the competitive person I am, I see this as yet another challenge from the universe and I’ll take it. I’ve had a problem for most of my life that when someone tells me I can’t do something, it fuels my fire to do it more and do it better. I’m starting to feel pretty fired up about this. For further incentive, I put the first Iron Girl race of the year on my calendar – April 29th, a 5K. I never miss a deadline, no matter what it takes.

The good news about the delay is that there are more field trips I can go on now, more events to hang out with my friends and I’ll be around for Thanksgiving. Turkey is my least favorite food, but I’ll make a point of filling up on apple pie so that I have a few extra pounds on before the long hospital stay. Kim, one of my great friends from Ulman Fund, texted me a picture of the new treadmill that they added to the BMT unit. There is also talk of bringing my bike in on a trainer. I am determined to come home with some of the strength I went in with. I just don’t want to have to start all over again.

I finished most of my preliminary testing on Tuesday. There was lots of analysis of my heart, lungs and other organs. I think I did better on those tests than I did previously, but it seemed apparent to me that I wasn’t “normal” yet … or may ever be. They wouldn’t give me any results (my doctor will do that next week) but when I prodded about my heart function, the woman kindly said that her mother’s heart is only at 20% (55% is normal) and she lives a very active, healthy life. Ha! I’m not sure that was comforting!!! My goal was to be at 55% and I don’t think I made it, but hopefully there hasn’t been any decline since last time, as a result of the chemo. Somehow I skipped my meeting with the psychologist, but I’m pretty sure I’ll at least pass that test!

The last thing I want to mention is the Light the Night Walk on Saturday. We are 75% of the way to our goal of raising $1,000! Thank you so much to those who have donated and who are coming out to walk with us. The forecast says there is a possibility of snowflakes! If you’re around and can come down, please do. Ty is making a Team Supergirl banner for us to carry. I’ll be sure to post pictures.

Day 513


I don’t have any further information to report right now. Everyone is asking me about a time frame and the latest on that is that I won’t go in before the 21st of November. I am just hoping that I can go in that week, otherwise the chances of being home for Christmas are slim. They need these next few weeks to get everything lined up with the donor. The transplant team is pushing to have all of this done as quickly as possible, but there’s only so much that can happen each day. Tomorrow I will be at the hospital from 8am-4pm for testing myself. I have been through these tests before, but not since before my autologous transplant. Although I am DREADING the long day and all the poking, prodding and scanning, I am curious to see how my body has recovered from everything. I’m most curious about my heart and lung function. My lung function was pretty poor the last time around. My heart function was just over 50%, which is not terrible. I think a healthy person should be in the 60% range. After all of the running and yoga, I would hope that these things have improved a little. A clean CT scan would also be nice given that the last scan from sometime in the early spring showed the slightest remnants of the liver infection. I would just be pleased to know that the rest of my body looks like a normal 35-year old’s, minus the broken chromosomes.

I’ve been incredibly busy this past week which makes it easy not to focus on worry or fear. I’ve also been productive as far as getting myself ready for everything ahead. I’m stocking up on food for the boys, buying new hats for soon to be bald head, organizing my household and finalizing details for a remodeling project. Our trip to Disney is booked and I’m thrilled. The time to prepare has made this all a little easier, but I can’t say that I haven’t had a meltdown or two. Going to the store today and seeing all of the Christmas stuff made it hard to think about the fact that I won’t be here to hang decorations or wrap presents or read Christmas stories while drinking hot chocolate with the kids. I know that I have to focus on the long-term goal, but just two weeks ago I thought I was almost free from all of this and now I am returning to my “prison” once again. It’s not self-pity, just intense disappointment mixed with fear of what the outcome of all of this will be.

There’s no need to wallow in any of that. Instead I want to focus on what I am grateful for which is my ever-so-incredible group of friends. They’ve got my back and I know it. I’m also so thankful for Brian’s continued support and shoulder to cry on. It is soaked at this point! But he remains steady in his belief that I will get through this and be okay on the other side. His confidence and faith in me helps keep me strong.

Day 506


Just got back from the doctor and we agreed to go forward with the transplant. I feel very optimistic about the whole thing. I wouldn’t say I’m looking forward to it, but I am looking forward to erasing this thing once and for all and HOPEFULLY gaining the rest of my life as a result. The second biopsy showed a lower percentage of abnormal chromosomes but they were still present. Some might debate the idea of waiting to see what happens and then doing the transplant when/if the cancer cells appear. However, the chances of it working and the chances of my recovering more quickly and easily if I do it now are much better. I will have a couple of days of chemo, then the transplant and then I come home. If all goes well and there are no terrible infections or side-effects, my doctor said that I may actually recover from this more quickly than with previous treatments because I will have all new chromosomes. However, the rest of my immune system will need time to adjust and that is where the restrictions come in. I will be stuck at home for a while, but it may not be that terrible. Most importantly, I will be here with my family.

The lab technicians at the hospital were so encouraging this morning when I told them about what happened. One of them told me about a woman in her 80s who did the transplant and is now 3 years in remission and never had any side effects. They said that when she went in for treatment, she was wheelchair bound and could hardly move around and now she is active and healthy. If she can do it, I can do it! The most important piece will be finding a donor who matches me as closely as possible. So prayers and positive thoughts for that.

I have two other items that I am incredibly excited about that are making all of this so much easier. One is that my original nanny that I had for Ty and Kieran, and who continues to be a wonderful part of our family, is going to come back and help take care of the kids while I am in the hospital. This has relieved so much stress for me, I can’t even begin to express how grateful I am for her doing this. I know that between her, my friends and family, they will be very well cared for and probably spoiled rotten. That’s okay with me. The second thing is that the doctor gave me the thumbs up to take the kids to Disney the week before we are hoping to schedule the transplant. Brian will be there for a conference so we will be tagging along. I can’t wait to do this! Between the trip, the holidays and all of the special visitors they will have, I think that the time I am away will go relatively quickly. And if all goes well I get to be home for Christmas. Lucky for them, I’ll have plenty of time to shop online for presents while I’m sitting in the hospital.

I will have more details about the transplant and the time frame in the coming weeks, but right now we are shooting for November 14th.

Oh, and one more thing … I will be walking with family and friends in the Leukemia & Lymphoma Society’s Light the Night walk on October 29th. It is a great family event held at Camden Yards. Each participant carries a lighted balloon and they fill the night sky. I have started a team called Team Supergirl. If you are around and could come down and walk, we would love for you to join us. If not and you would like to make a donation, you are welcome to that as well. All proceeds go towards the research and support that has carried me through this whole experience and is keeping me alive today! Here is a link to our Team Page to register to walk or donate:

Day 502


I don’t have any news yet. A lot of people checked in with me today to see if I had the biopsy results and I just wanted to post to say that I haven’t heard anything. My doctor should have seen the biopsy report by now, but I think it took over a week for her to get the cytology report on the last one. I go on Monday for routine bloodwork so I will certainly be checking on the status of everything if I haven’t heard before then.

In the meantime, I am fine, really! I’ve come to peace with the possibility of what lies ahead. It will suck and I am furious that I will have to grow my hair out AGAIN, but I will get through it. I have so many incredibly inspirational people who I know personally or have heard about who have been through this before and they are all living amazing lives. I spoke with Roseann today and we talked about the many positive things that could come out of this experience. I’ll go into detail about some of that another time. But, more importantly, she reminded me that when I took on the name “Supergirl” in the beginning of all of this, I set a standard that I must live up to :) And as Melly pointed out, I have a team of doctors, nurses, friends and family behind me that are truly committed to bringing me through this and that is the most that anyone could ask for. Additionally, as my aunt pointed out, I can use all of my recovery time in isolation to train for next year’s Iron Girl. I might avoid the lake swim to steer clear of infections, but I could certainly prep myself for the bike this time too. And lastly, I myself am already seeing the opportunity to finish decorating my house, organize years of recipes, build a few websites and take up some craft projects. Holly brilliantly suggested that I do a daily blog of what I’m doing while I’m housebound. So keep an eye out for that.

If, by some miracle, I don’t have to go through this again, you better believe that this life I have been savoring is about to get even better. I’m tired of having near-death experiences but they are an exhilarating reminder to not take your time for granted. Do what you want with your life now, not later, no excuses.

I’ll post as soon as I hear anything. Thank you for all of your comments, emails and phone calls. I appreciate it more than words can say.

Day 499


Well just one day away from Day 500, I have quite a bit to report. I wish I could say it was all good news, but unfortunately there was an unexpected report from the doctor yesterday and it has thrown things into a whirlwind. Everything has been going very well for the last month. In fact, I have been excited to blog about running 6 miles in the Half Full Triathlon two weeks ago with a great group of my friends. It was an awesome experience and I was thrilled just to finish, nevermind the fact that I ran the fastest I have run thus far since recovering. I was planning to start round 7 of the trial the Monday following the race but my counts had not recovered enough. I had been delayed before so it wasn’t terribly surprising. I also had my biopsy done two days before the race and the verbal report from the doctor (she had not yet seen the written report) was that everything was fine – I was still in remission.

Yesterday I went for bloodwork and to try once again to start round 7, but my platelets were just shy of the level they needed to be to start. However, the nurse practitioner presented me with my biopsy results and explained that they had received a call from cytology indicating that there was a problem with one of my chromosomes. I am still in remission, but one of my chromosomes was now showing as having a break in it. Up to this point, my chromosomes have been perfectly normal and thus the reason that I did the course of treatment that I did. I was an ideal candidate for it. The change in the chromosome is, according to my doctor, an indication that the AML has progressed to a more serious stage. Although I have no cancer cells whatsoever, the root of the problem (the chromosome) is now in a better position to produce cancer cells and needs to be corrected. The only way to do this is with a donor stem cell transplant.

My doctor was literally in tears when she told me. I was honored to have a doctor that felt so much about me personally and I felt like I needed to console her as much as I needed it. She was completely surprised by the findings and we immediately did another biopsy to confirm the results. In the meantime, the BMT (Bone Marrow Transplant) team has already begun work on locating a donor for me. They have 10 matches to start with, which as an incredible number considering how difficult it can be to find a match. But when I spoke to my BMT nurse this morning, she said that the team presented my case yesterday at a meeting and they, too, are waiting to see the second biopsy results because it is very unusual for this progression to occur.

There is the possibility that the chemo itself cause the new leukemia, just as breast cancer patients sometimes end up with leukemia years later because the chemo is so toxic. Ironic, I know. I had no choice but to do the chemo. My doctor doesn’t necessarily believe that but thinks that the leukemia that was there could have just naturally progressed to this point and we have just detected it before it has started to actually form the cancer. The chemo I did killed the cancer that was there but didn’t correct the root problem.

There are many more details and many questions, but I hesitate to go too much into detail until everything is confirmed on Thursday or Friday. I can most likely begin to prepare for a transplant in mid-November, hoping that the match works, there are no terrible side effects and that I can come home by Christmas. If all goes well and it works, I will be housebound for 6-12 months, depending on how long it takes for my new immune system to rebuild. Yes, I will lose my hair all over again. I won’t be allowed in public or to eat in restaurants or to be around anyone who is sick. My kids germs will become my enemy once again.

It’s a lot to take in considering that this never really occurred to me as a real possibility. I can’t say I didn’t worry about it from time to time, but I felt like Supergirl and I felt like I had defeated this. I can’t stop feeling like Supergirl now – if anything I have to fight a lot harder.

I will write more in the next few days as I learn more myself. I guess that this blog will be continuing for quite a bit longer now. Thank you for sticking with me on this. Power up those prayers and positive thoughts. I will really need them!