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 >

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!

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!!!!

Thank you all for the birthday wishes, surprises and phone calls. It was a fun day and got to talk to and see a few people that were big surprises to me, which was great. I got a surprise balloon delivery from a great friend in the morning, lunch with another great gal in the afternoon and then a few surprises from my kids in the evening. I also got to catch up with some long-time friends by phone, which is always wonderful.

The day started off a little sketchy. I had noticed a small rash on the side of my face and neck the night before so I woke up expecting to spend the day at the hospital. But after speaking with the doctor, he felt he was fine to wait and see me until Wednesday. There are a million reasons why I could have this rash: a food allergy (which I have yet to figure out), GVHD (graft versus host disease), a reaction to a skin care product (again, which I can’t figure out), or my favorite, acne. Initially, I was almost excited to see the rash because they had told me that having a little bit of GVHD is actually a good thing – it’s a sign that the transplant is working. However, then I realized that when my counts dropped last week they were checking me for shingles which is something that can come up in post-transplant patients. I described the rash and sent pictures to Melly (the doc) who quickly pointed out the reasons that it probably wasn’t shingles and that one of the side-effects of my immune suppressant is acne. Sadly, we were all very excited that I might have acne and not shingles! So happy 36th birthday to me – I now might have adolescent acne again. Do I feel 14 again? In a way yes, my life sometimes feels like a dramatic mess, but acne is no longer the thing ruining my life! Guess I have matured in 20 years.

I ran 2 miles on the treadmill yesterday and then did 30 minutes of Dance Revolution with Kieran. I was fine after the run, but the dancing proved the real work out. One day I’ll figure out how to post the pictures that the Kinect captures. It’s hilarious, but the most fun workout you could ask for.

I’m feeling okay overall. Definitely not 100%, more like 60-70%. The thing I am finding most difficult now is that I want to go outside so badly and at least go for a walk. I may be begging and pleading with the doctor tomorrow to let me do that. I’m also going to try driving today. I think that will offer me a sense of freedom as well. I don’t need to get out of the car, but just being able to go somewhere besides my house and the hospital would be great. I may just drive around the neighborhood and listen to the radio cranked up!

Tomorrow is a big day. I’ll find out what is happening with my counts and if all is well they will pull my line out. They will also run the blood test to determine what percentage of donor cells I have. We’re getting there, slowly but surely.

My bloodwork on Saturday morning was basically the same as Wednesday. Platelets were up slightly (40-43, which doesn’t really mean anything) and red counts were still low, but the same as Wednesday. My white count had dropped from 3.1 to 2.1, which was not comforting in the least. However, after having my meltdown in the car on the way home and going to every bad place imaginable in my head, Brian did offer a realistic perspective on the whole situation. We discussed the fact that this is all part of the process and none of the doctors or nurses are freaking out, so that’s a decent sign. Also, realistically, I just went through chemo so it’s not likely I would have any active cancer right now. Additionally, my old cells are dying off and my new ones should be taking over. And, of course, there is the fact that the doctor believes the counts dropped because of the medication. My always reassuring doctor friend Melly, confirmed that the medication they reduced takes almost 3 days to start to diminish in your system. The bottom line is that it could take at least a week to see any sort of change from the dose reduction. So I am not freaking out. Physically I feel okay, just low on energy because of the anemia. I am fighting some sinus issues and eager for my counts to come back up so that can go away. I also know that they tested me for all kinds of viruses and I didn’t have anything. The big picture is that my bone marrow is making a lot of adjustments right now and this is all part of the process. There will be ups and downs, but if the transplant took, things will improve over time and I must stay focused on the end result.

Today is actually the one-month anniversary of the transplant. Tomorrow I turn 36. Never, in a million years, would I have imagined this is what would be happening to my life at 36. But we take what we get and we make the best of it. I’m home with my family and I must keep faith that this will work. On Wednesday, I believe, they will draw blood to do the first test to see how many donor cells are there. I think that I will have the results of that at the end of the month. They are also planning to pull out my central line which would be great.

I’m keeping myself busy with little projects. On Friday I worked on a photo book commemorating 2011. It ended up being 30 pages of photos that highlighted all of our vacations and everyday adventures. I do one every year, but thanks to Shutterfly, they keep getting bigger and more complicated. Shutterfly now lets you custom design the entire book, which for a designer is a dream and a nightmare. What I planned to do in an hour took me over 6 hours to do! But I’m really happy with how it turned out. I think it’s also a great way to show that amidst the chemo and all of the ups and downs with my health, we triumphed as a family in doing as much as we could and enjoying the day to day. Years from now, I hope the kids won’t really remember the hospital stays and the days I didn’t feel good. With a book like this, it will help them remember all of the other great things we did – and it’s a good reminder for Brian and me as well.

Before I go, I wanted to share part of a piece written by my friend Gina. She is writing a parenting series that relates parenting to the seasons. I’ve told her how much I relate my experience right now to the seasons – I see this period in my life as my “winter,” my time to hibernate and rest. I look to the spring as my time of rebirth, regrowth and renewal. Her most recent piece was titled, “Nature’s Knowing: Patience and the Unknown.” This is an excerpt from it that offered great comfort to me and an important reminder that I must relax, have patience and have faith that my spring will come.

Patience is a gift of the winter. As much as we want to make spring come sooner (especially by the end of March!), spring comes in its own time. I might not know what kinds of afterschool activities (or how many) to offer my daughters. However, if I have patience and if I “try out” different combinations, I will eventually find what works for my children and our family. The perfect mix might not come the first time. It might take many variations. It might come with lots of effort on my part and it might come after a quick comment from my daughter. The important part is trusting that it will come. Trust the process. Know that with patience, commitment, and strength the answers will come. Spring always follows winter. There is no other way.

As I “try out the different combinations,” go through the ups and downs, my doctors and I will eventually find what works, but I have to “trust that it will come.”

One more quick thing I want to mention before I go. Chronicle Books just released this cookbook by an 11-year old named Jack Witherspoon. As the description states, Jack “was going through incredibly tough times battling leukemia for the second time and he sought solace in the Food Network and decided his dream was to become a chef.” He wrote this cookbook, Twist It Up, for kids and now cooks all over the place, raising money for cancer research.

The nurses used to joke with me in the hospital about how there would be 3 or 4 rooms with the Food Network on at night and wondered what is was that appealed to us so much about it. For me, perhaps, it was my natural love of cooking and my desire to get home and make all of these meals to heal my body. But I laughed and smiled when I saw that an 11-year old boy was doing the same thing! I plan on getting the cookbook for Ty because he, too, now has a love of Food Network, especially Cupcake Wars. Though Diners, Drive-Ins and Dives is a close second for him. Although he hasn’t ventured too far into cooking, he now wants to write a cookbook after hearing about this kid. We’ll put it on his to-do list. Anyways, if you’re looking for a cookbook for your kids, what a great one this would be to start with.