Notes From Supergirl

My Diary from the Trenches

Day 611


I’m having sort of an out-of-body experience today and I haven’t fully digested what it all means or could mean, but I wanted to share the news. When I got to my appointment this morning, my doctor simply handed me a sheet of paper, a report, that showed a series of 100%s written down a column. It was a cytology report that they ran last week to determine the number of cells in my blood that are mine versus the donor. I don’t think I need to say any more than the doctor did, but simply put: 100%. All of those white and red cells, platelets and everything else working in my immune system right are brand new, 100% donor cells. My tired, unhealthy cells have vanished and what is left is a currently thriving new immune system. My doctor and I didn’t talk much today, we just did a lot of smiling.

I’m not going to talk too much about what this means, but a lot of that can go unsaid. I don’t want to talk about details (all of which are good), because I want to wait until I have my 100-day biopsy which will confirm what my bone marrow truly looks like. They will analyze everything at this point. But let’s just say that this is a very good sign of things having gone in the right direction.

As I said, it feels like an out-of-body experience in the most amazing way. I am excited, but feeling incredibly reserved about it because I am so used to ups and downs. Everyone I’ve spoken to has mentioned celebrating and I don’t feel like I can quite do that yet. I can’t celebrate until I see a report that literally states “all chromosomes are normal.” BUT, I am savoring this moment. I know my body has done something incredible and it gives me further confidence to believe it will do everything it needs to do from here on out.

I did indulge a little and eat a delicious red velvet cupcake while registering for the Half-Full Triathlon in October :) I also organized some work projects and took care of some details with my business that needed attending to. The more I can do to live my life, the better I feel. Today feels pretty great.

I think part of my hesitation today also comes from the fact that there are certain patients I cross paths with at the cancer center on a regular basis. There is one young girl who I see often on the transplant side. We’ve never been introduced or spoken to each other, but I suspect she is friendly with some of my contacts from Ulman Fund. In any case, I’ve watched her over the past few months as her hair has started to grow back in and she’s looked good, healthy and strong. Today I saw her and she was in a wheel chair. She looked okay, but it caught me off guard. I don’t know her story but had assumed that she had a transplant and would be skipping out the door in a couple of months. She might have something completely different. And maybe she was in a wheel chair because she hurt her foot. When there are so many of us there, all the time, you try to figure out everyone’s story and you want nothing more than to hear that they all turned out all right. I think it’s the same as when I read blogs by other patients. I find it excruciatingly difficult to read about others going through the same thing who haven’t had success. At points it is because I am fearful that I could end up like them, but at other points it is almost a feeling of guilt. Cancer isn’t fair. I want to celebrate my own good fortune but it feels selfish when there are so many others trying just as hard as me. Rather than focus on this as a negative, I’m just going to do what I can to send my positive energy their way – her way – so that maybe she will be better the next time I see her.

The last thing I want to do is just to send an overwhelming thank you to my donor. I wrote her a letter last week and I can’t wait to hear back. She has given me and my family and all of the people that love me a gift that can never be fully grasped. It goes far beyond simply allowing me to live my life, but to live a life that has so much more meaning, love, connection and faith than I could have ever had before. I hope I will get to tell her this in person one day.

Day 605


I apologize for the lack of updates this week. Somehow I am managing to keep myself very busy with no place to go. Let’s just say my house is getting very clean and organized and I’m slowly working my way back into shape. But here is the update from today … the biopsy results came back and showed that the rash on my face is in fact a drug reaction. I was a little surprised, but it’s not a bad thing. It’s probably a good thing, actually. It means that I didn’t have (so far) a case of acute skin GVHD, which means that the chances of me having chronic skin issues from GVHD are far less now. That’s a wonderful thing. As far as which drug I’m reacting to, the only way to determine that will be trial and error. We are slowly tapering down the steroids and I will go off of the new antibiotic that was added in about two weeks. At that point, we will watch and see what happens and then start switching out medications if the rash returns. It is unlikely that it is one of my immune suppressants because we have increased the doses on those since the rash started. I have actually already stopped one of the antacids that I was on because it was giving me headaches (I have to take that to stop my stomach from freaking out from all of the other medications). So it will be interesting to see if it doesn’t return and the antacid was the cause. Other than that, I am just on a regular antibiotic and the antifungal that I have been on and off of since the liver infection. Thus, it shouldn’t take too long to figure it out, but it means I can now list at least 5 medications that I have developed allergies to in the last two years. Funny how I was never allergic to anything before this.

One very important piece of good news in all of this is that my counts have been climbing up beautifully. My platelets were 148,000 today!!! My red cells are almost normal and my white is also completely normal at 9.1. This is actually on the high end but as a result of the steroids. Once the steroids taper down, my white should balance out at a nice level. The platelets are all mine though; i.e. not the result of steroids but the result of my immune system working! Last week when I found out they were over 110,000 I actually started crying tears of joy in the doctor’s office. I told my friends that if my platelets make it to 200,000  I will probably pee myself. But just FYI, normal platelet counts start at 150,000 and my doctor informed me today that my platelets are actually higher than his right now so this is the closest I have been to normal in at least 2 years. As surreal as this whole experience has been, to have that part of me be “normal” again, even if it’s temporary, is also surreal and wonderful.

The doctor said to expect ups and downs as things move forward. One day my platelets might be 250,000 and then they drop to 80,000 and it doesn’t necessarily mean that anything is wrong. It is just part of the adjustment period. He said the best thing I can do is keep exercising to rebuild my strength and stamina (uh, okay!) and just be patient. Thank goodness I have gotten to enjoy some good news this past week because it is really helping with the patience part.

Medical stuff aside, I’m finding this time at home to be somewhat inspiring. My creativity has been surging lately with lots of new ideas for work and personal projects. And believe it or not, I actually have a lot of stuff to keep me busy. I also started driving last week so I’m enjoying being able to take the kids to school. It’s the little things that help me feel more connected to the world and “normal.” I can’t imagine anyone gets nearly as excited about picking their kids up from school as I do! But just think how happy you would be if those little things in life actually brought you that much joy. It’s something I savor and am grateful for.

I’m going to post again soon to talk more about some of my creative ventures, but before I go for today I just wanted to say another thank you to the Ulman Fund for Chef Dawn. She came yesterday and prepared a week’s worth of scrumptious meals for us. I also want to thank Matt for making the trek up here to hang out with me. I have to say that I love that I get to see so many of my friends right now. I am definitely feeling really lucky. And speaking of lucky, yesterday was the start of the Chinese New Year and this year is the Year of the Dragon. Guess who’s a dragon? You got it! I’ll take all the dragon superpowers I can this year to make it my best year yet!

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Day 598


Okay, here’s the latest on the rash taking over my face. I was ready to go down to the hospital yesterday because it had gotten so horrid looking (and I have pictures to prove it that I may show one day), but honestly I was getting scared of what the heck was going on. The on-call doctor told me it sounded like GVHD so he increased my immune suppressant drugs to combat that. He told me to come in first thing this morning to see my doctor. Honestly, I was kind of a psychotic mess yesterday, Googling way too much and letting my head go to awful places. Fortunately I have some very level-headed friends and a very good husband who were able to bring me back down to earth. A special thank you to Michael who reminded me that the worst stories usually come up in google first because they are the ones with the most hits! When I am cured, I am making it my mission to be one of the first stories that comes up when someone googles anything about AML! And I will have links to all of the other success stories before and after me. I’m not going to let all these negative endings take over the internet!!!

Anyways, after all of that, my doctor was not that impressed with my rash today. He said it does look more like GVHD now but he still wanted me to see a dermatologist and have a skin biopsy done to confirm that it is not a drug allergy. We should have the results of that on Thursday and I have now added two more scars to collarbone area along with a boatload of new medications. I am now taking 9, that’s right 9! medications each morning. Three different antibiotics that each target different things, two immune suppressants, a steroid, two vitamins and Zantac to help my stomach absorb all of this toxity. When I get ridiculous jitters and nausea from all of them, I add an Ativan which helps mellow me out a little. Fortunately, the medications for the rash should only be for a short time. My doctor thought we would see significant improvement by Friday. I love that the steroids are helping, but I would love to get off of them ASAP. Oh, and both doctors said this would not leave a scar. It should disappear nicely and just be another fond memory on my journey.

So the really good news in all of this is my doctor was actually pleased to see the rash. I referred to it as a “bump in the road” and he said, no, not really. The unfortunate part is that it is on my face so it’s hurting my ego more than my body. As far as my body, having a mild case of GVHD is a strong indication that I could also be experiencing Graft Vs. Leukemia which is where the donor cells attack any bad cells they see in the marrow. The rash is also an indication that I have a large number of donor cells in there, even though we’re still waiting on that report. My counts were also back on track. White cells and neutrophils are normal, platelets climbed up to 77 and red cells are a little low but steady. They had reduced my immune suppressant when my counts dropped so I was concerned that increasing them again will have the same effect. He didn’t feel that would be the case as we are a couple of weeks out from that point where there are more donor cells to do their work.

That’s the story. I am feeling immensely relieved and much more optimistic now. It has been a rough few days. Chip kindly reminded me in an earlier post that most of my freak outs turn out to be okay in the end. I was finally able to bring myself back to earth about this when I realized that I fought the liver infection for 2-3 months, so a rash was nothing in comparison.

In my sleepless hours in the middle of the night, I’ve been listening to lots of hippie spiritual stuff and my latest download happened to retell one of my favorite stories about faith/survival/trust in ourselves. The summary of which is that when we think about a boat floating on a river of rapids, when we try to go upstream (against the flow) we run into nothing but challenges (we make ourselves work harder and for far less success). However, when we turn the boat around and let ourselves ride with the flow, we learn to navigate around the obstacles that come before us. In other words, I, and all of us, need to “go with the flow.” When we truly believe in what we want for our futures, it will be there for us, but we need to have faith and follow the ride no matter how hard it seems. Ultimately it will get us to the destination we believe in for ourselves. The trick is to really and truly believe that what we want is ours for the taking.

Okay, enough of my preaching for today. I go back on Friday to follow up on everything. I’m hoping this clears up beautifully so I can add some really great before and after pics to the gory details section. Stay tuned!

PS: Check out the video I just added to my inspiration page. Dr. Seuss fan or not, it will make you smile >

Day 596


The good news is that I had my central line pulled out on Friday and did my first downward dog in over a month. My arm muscles supported me as I moved in and out of positions, which they didn’t do the last time I returned to yoga after having my PICC line removed. Overall, I’m hoping that my physical recovery should go more quickly this time around. But I’m still struggling with just not feeling well. I’m fighting a cold that has me feeling run down and is making it really difficult to sleep at night. And this acne/rash on my face has progressed rapidly from something that was barely noticeable to large blotches all over the front of my face, side of my face and along my neck. The baldness hasn’t bothered me this time. In fact, I’ve only worn the wig a handful of times. But this acne is taking a definite toll on my emotional state. I did some research and feel safe in concluding that it is in fact a side effect from one of the immune drugs, as I read about other people having this issue. What is scary to me is that I may be on this drug for months and in a matter of one week it has gotten considerably worse. It is scary to me to think what I could look like in another week, let alone 3 months. It is also incredibly frustrating because I had skin issues in my earlier years and after learning more about diet and skin care products, my skin had cleared up to the point that I was proud of it. My 13-year old self would have never believed that! Although this is all sounding incredibly vain, it’s less about the vanity and more about the fact that I can’t fix this in any way right now. I’ve tried different products, which have only made it worse, and my diet is already pretty clean and healthy. The only way to fix this is to go off of the medication and I can’t do that.

I can’t believe I just wrote an entire paragraph about acne. I know, you are probably all thinking that I am crazy. If that is the worst problem I have right now, god bless! And you are right and I agree!!! I just feel that our outside is a strong reflection of our inside and my outside looks ill and out of sorts right now. As far as my insides, I’m still having little issues that indicate to me that my platelets are struggling to come up and the ongoing cold is a sign that my white cells are being challenged. I’m not worried about any of it. I have faith that things will come to a balance. As I’ve said before, patience isn’t my greatest virtue and I have to find a way to make it so.

In the meantime I had a great night in with some girlfriends on Friday and I’m looking forward to the Ravens game today. I have many wonderful creative projects that have come to me recently and I plan to start focusing on those on Monday. My energy level has improved some and I feel ready to do something creative again to help refocus some of this negative energy I am focusing on my face!

Day 593


Yesterday went well, which was a huge relief. My platelets came up a little (up to 59,000) and my white count is back to normal. Red count is almost there, but much improved. The doctor was not at all concerned with this growing rash/acne thing I have on the sides of my face and neck. He said he thinks it is most likely a reaction to one of the medications I am taking, but he can’t take me off of any of them, so I need to live with it. That was good news; however, I can’t say I’m thrilled to have this teenage acne all over my face. It’s a real challenge to my self-esteem to look in the mirror right now – bald and everything above my shoulders breaking out. I know that if this is the worst side effect I have, I am truly blessed, and I mean that. I just have to remind myself of that … every time I’m in the bathroom :)

I was supposed to get my line out yesterday but there was a 4-5 hour backup in the department that removes the line. Now I scheduled to have it out tomorrow morning and just have to hope my platelets remain above 50. They should because they should be going up. I’ve just learned to be prepared for the unexpected. I actually tried that approach yesterday when I went to the doctor. I went in preparing for the worst (lower counts) and was thrilled when they actually went up. It felt better than the days I go in expecting everything to be great and then getting bad news. It sounds like a pessimistic attitude, but as my husband would say, it’s really just being a realist. I’m not giving up on optimism, just trying to recognize that there are lots of ups and downs and it’s easier to deal with the downs when I recognize they are par for the course.

But, in really, really exciting news, I got a letter from my donor!!! We have to remain anonymous to each other for one year following the transplant, but she was kind enough to send me a Christmas card to say that she thinks about me all the time and hopes everything went well. And, it was all written in German! So I’m not sure now whether she is actually a German citizen or if she is part of the US military as my nurses led me to believe. She may not know that I am American and she could have assumed she was donating to a German. So many questions! Regardless, it is obvious that she is someone with an incredible heart to not only donate her cells but to reach out to me. I will be writing her a letter this weekend. I can tell her anything about myself, I just can’t reveal my identity. It’s so exciting for me and it has brought such beautiful new meaning to my new cells because I now have this kind, wonderful person to attach them to. I am also optimistic that I could meet her one day – one more amazing thing to add to the vision board.

Another unexpected surprise is that I ran into one of the people I have befriended through this experience, Dan, at the hospital yesterday. He went through the same regimen that I did with the autotransplant. He has been a huge inspiration to me as he left the hospital and literally started climbing mountains on his bike. He rides to ridiculous heights, but has once again proved how strong you can become after an experience like this.

Today I had a wonderful meeting with Roseann and we have lots of great things we are working on for Team Inspiration and the Healing House. I also snuck outside for a bit to smell the fresh air and feel the sunshine. My doctor might not be happy with me, but I thought a little dose of vitamin D would be a good thing.

I don’t have to go back to the hospital now until Wednesday – wahoo! If I’m not back on here before Sunday, GO RAVENS!!!!

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