So I realized as I was counting the day for this post that June 1 will be the two-year mark for me writing this blog, which means that I somehow have miscounted 10 or 11 days in the middle of all of this. Not that it matters at all, but for now, no more counting the days. I was never good at math.

I just wanted to do a quick update while I have a moment. There is not much to report, which is a good thing. I was taken off of the antibiotic that all of the doctors suspected was causing the rash, but I can’t say I have noticed a huge improvement. It’s been about 2 weeks now and the dermatologist said it takes about 30 days for your skin to heal and regenerate, so we’ll see how things look in another two weeks. In coming off of that med, I had to basically triple my immune suppression doses because the antibiotic had inflated them and going off of them means I need more of those meds to maintain the same level of immune suppression I had before. It’s not a big deal, it just means an extra 9 pills per day! I’ve gotten really good at swallowing pills and learned the right way to double them up and not choke when swallowing so that it doesn’t take me 5 minutes to get everything down. In the morning I am now taking 14 pills. So much for tapering down But we will get back to tapering down once everything levels out. Today is my 5-month post-transplant point and my doctor was hopeful I would be coming off of some of these things around 6 months. I’m not sure it will happen, but a few less pills would be nice.

Another fun thing that happened is that I got pink eye. I’ve never had it in my life and I got in one eye, then a few days passed and it showed up in the other one. It is most likely allergy related. It looked (one eye still looks) atrocious. But I seriously am just laughing about it now. Brian thinks I should start a list of all of the things I’ve gotten since starting this whole process. Fortunately most of them have been minor.

To follow up on my last blog post which I received quite a few wonderful emails about, first off, thank you. I really appreciate the things that a lot of you shared with me and I really appreciate your support. In a bit of irony, another friend forwarded a story to me about a college student in Boston who was diagnosed with end-stage melanoma. Her treatment had not worked and she was left with little to no options. Her mother found a hospital in Mexico City that used a treatment that included something called the Gersten Diet. The long story short is that the girl is completely cured and she continues on this diet today. Of course I went and researched the diet and it is primarily a raw, vegan, organic diet based on a lot of juicing. What was interesting is they described the cancers that have had great, well-documented success with it and those that it has not worked for. At the very top of the list of the people who should not try this diet are those with AML! I am completely intrigued now as to what their research shows regarding why this diet didn’t work for AML. Is it simply that the leukemic cells do not respond to nutritional changes or is it something about the diet that negatively impacts the cells? My guess is that it is the first concept as most of the research I have done shows that things like green tea, which has been fairly well-tested, showed no changes for patients with AML but did work for other types of leukemia. This brings up another point – when people talk about miracle cures for cancer, they often don’t understand the complexities of a disease. There are multiple forms of leukemia and what works for patients with CML is not at all what works for patients with AML. So to say that a leukemia patient was cured through a certain type of diet, one must understand what kind of leukemia they were dealing with. AML, unfortunately for me, does not seem to respond to a lot of things. It is a very stubborn cancer, thus the reason that so many patients must go through transplant to survive. The immune system must literally be erased because it does not seem to be so fixable. It is also the reason that AML is likely a result of a genetic flaw or some toxic environmental exposure. There doesn’t seem to be any rhyme or reason as to who gets it – yet. One day they will figure it out and I hope I’m around to see it because as much as I hate it, I find it fascinating.

The last thing I want to ask before I go is that everyone keep my good friend JP in their thoughts. She is another young adult patient who has been in remission from liver cancer for just over a year after receiving a transplant. She has been doing beautifully until about a week ago when she came down with pneumonia and is now back in the hospital dealing with possible rejection issues. Regardless of how difficult her situation is right now, she remains incredibly optimistic and cheerful and thus, one of my heroes. She is awesome and I am just keeping all fingers and toes crossed for her and hoping this is just a small blip in the road. Please include her in your prayers.

It has been quite a while since I have posted. I have been meaning to and just haven’t been able to find the time. Everything is going well. I am in a steady state with my blood counts – the red, white and platelet cells are all in the normal zone which is just phenomenal after all this time. My t-cells are slowly coming up and the doctor is weaning me off of some medications. After a couple of months of stomach trouble, we finally discovered that the culprit was the magnesium I have been taking. Many of the immune-suppressants lower your magnesium level so you need to take extra magnesium to stay normal. However, magnesium can upset your stomach. We cut the dose in half last week and I have thoroughly enjoyed a week of less stomach cramps and time in the bathroom! A gory detail, I know, but it’s all part of the recovery process. The good news is also that the stomach problems were drug-related and not GVHD. I’m still dealing with skin problems but that won’t go away until I go off of the medication that is most likely causing it. It is debatable now whether it is worth trying a new drug (that could come with it’s own issues) or just continuing to deal with skin irritation and an itchy rash. The rash is really starting to get old, but I also fear any new medicines because I seem to react to everything.

Okay, now I’m going to take a moment to rant about something. I debated about whether or not I would do this because I know that there are people who will read this and know what I am talking about. Let me preface this by saying that it isn’t meant to offend anyone. I just felt like if I had done this in person it would have caused a great deal of unnecessary tension. Additionally, my feelings about this are so strong that I needed time to compose myself and I wanted the time and space to lay out my thoughts in an educated, level-headed way. So here goes …

As you all know I have spent an enormous amount of time researching diet, nutrition and cancer treatment and prevention. I have spent most of my adult life eating a well-balanced – some would say over-the-top – nutritionally based diet of mostly organic food and avoided anything processed, fatty, starchy, you name it. I have also exercised and lived in a toxin-free home for most of my life. My parents were very conscientious of cooking nutritionally sound foods and exercising well before it was fashionable to do so. We didn’t grow up on fast food and milkshakes, though of course we had things once in a while. When my mother, a very healthy woman, was diagnosed with breast cancer, I went even further to do everything I could to be as healthy as possible. But my mother fought as hard as she card and still couldn’t beat breast cancer. And two years later I was diagnosed with leukemia. If you would have asked anyone in my circle of friends who you thought would get cancer, I’m guessing I would have been at the bottom of the list. I’ve never smoked, hardly drank and did everything you were supposed to do to stay healthy. Did I eat red meat? Yes. Did I eat cheese? Yes. However, ironically, I gave up most dairy a couple of years ago. But I still got cancer.

There is a movement that has existed for some time that feels strongly that diet and cancer have a direct correlation. If you eat the purest diet possible, you will either completely protect yourself from cancer; or god forbid you ever get it, you can be cured by simply eating better or smarter. There is a feeling that modern medicine is simply a farce, it is driven by financial support of industries like dairy farmers and pharmaceutical companies who would go out of business if the truth ever came out that cancer would not exist if people just avoided dairy products and ate purer foods rather than take medicine for cancer. I suppose that when I was first diagnosed with leukemia in June 2010 I could have rejected the idea of chemotherapy in favor of trying a stricter, healthier diet than I already was doing except for one problem – I probably would have died. My immune system was crippled and the timing of my diagnosis was critical for saving my life. But even after going through the last two years of treatment, I continued to make modifications to my diet following extensive research and making food choices based on the best educated guesses of the scientists, doctors, researchers, patients and nutritionists that I found. I consume occasional amounts of cheese or eggs, I still eat gluten and I have a little bit of chocolate every day. But I don’t eat red meat, I don’t drink milk, I down a green smoothy (kale, green apple, avocado, hemp seeds for protein) daily, drink lots of purified water and eat almost entirely organic foods consuming easily 7-9 servings of fruit and vegetables each day. Oh, and I do tons of yoga, run and meditate and have worked very hard to decrease the stress in my life. And I truly am much more at peace with myself. Yet, in October, my biopsy results showed that all of that was not enough and my stem cells began to morph into a danger zone.

By the miracles of science, I still had a chance to cure this disease by replaced my sick stem cells with new healthy ones from someone who was a perfect genetic match to me. And here I am today. Am I cured? I have no idea but can only hope so. But I’m not willing to take any chances so I continue to do the things that I think are best for my health. But I also know life is far too short and I refuse to spend any time stressing over the food choices I make because I know I am doing what I think is right for me. And I know I’m doing better than at least 98% of the population, though I don’t mean that in a way to put me on a pedestal. I simply mean that if you looked at what the majority of leading nutritionists and doctors, even people like Dr. Oz, feel is a perfect diet, I’m pretty darn close.

But if my point isn’t clear, let me clarify. I am offended and angered by those who negate the incredible advances we have made in medicine over the last 100 years and who would argue that medicine is unnecessary if everyone just learned how to eat right. It is a direct implication that I am somehow responsible for my cancer, or it’s recurrence, because I did not make the right choices in regards to what I ate. Yet, my friends who smoke, drink, do drugs (or have done them in the past) and eat red meat, dairy, fast food, limitless amounts of sugar and don’t exercise at nearly the level I do are healthy as can be on paper. Perhaps things will catch up with them, but perhaps not. I have a morbidly obese uncle (who will not be reading this blog!) who has lived off of pastries and deli meat for over 90 years! Sure he probably has diabetes and a few other problems, but he’s still here and has never had cancer and he’s over 90 years old. My 93-year old grandmother has followed a similar diet, though the last 20 years she has stuck to mainly grilled cheese sandwiches and an english muffin. I’m not sure if she consumes any vegetables. And she’s covered her hair with Aqua Net and Lysol-ed her home for as long as I can remember, a solid 30-40 years. My own father-in-law was in Vietnam and exposed to all kinds of chemical agents, has smoked through his entire adult life and eats fried sausage sandwiches and beans cooked in bacon (no offense Ginger!!!!). But for the most part, he’s fine and nearly 70. He laughs at my hippie diet all the time!

And then there are the children who get cancer. What did they do wrong? Was it because they were vaccinated or given formula instead of breast milk? What if they were given breast milk? Was it not good enough? Was it something their mother ate and it’s her fault?

Most of the young adults I have met over these last two years who have been diagnosed with cancer look at lot like me. They were healthy, very physically fit and generally ate well and took care of themselves. I know them now because they are triathletes and take their diet and fitness extremely seriously. Yet, many of them have had their cancer recur. One of the people that I have been most inspired by is Ethan Zohn from Survivor. He was diagnosed with lymphoma and went through brutal treatment for at least a year, maybe two and then went into remission. He spoke at an Ulman Fund event last year. He was an elite soccer player before diagnosis. I have read his story and I am confident he followed every dietary change he could to assure that he stayed healthy. He has also run races and marathons and championed for young adult cancer patients. Yet this fall his cancer returned. What did he do wrong?

Do I believe that some doctors make decisions based on pharmaceutical companies and the money they can make? Sure, of course. But I invite you to come to the University of Maryland and meet my doctor and others in the cancer center who support the integration of holistic and alternative healing practices through the Healing Pathways program. I invite you to ask my doctor what he thinks about my chances if hadn’t gone through transplant. I invite you to talk to him about diet and exercise and see how crucial he thinks it is for long-term survival. He will tell you it means just as much as medicine, but you can’t take medicine out of the equation. My own son, born 5 weeks prematurely, would not be here without science and medicine. It saved his life and it is saving mine.

We all have a lot to do to live healthier lives and reduce our negative impact on the planet. But before you simplify the connection between and diet and cancer, research the other side of the story. Yes, there are people who have been miraculously cured by simply changing the way that they eat. But there are many, many more who haven’t been. There is a balance, a critical balance, between holistic practices and science. Amazing medical doctors like Dr. Andrew Weil are awesome examples of those who are bridging the gap between Eastern and Western thought, but Dr. Weil will be the first to tell you that they each have something to learn from the other.

Leukemia is a very different cancer than a solid tumor cancer. In many cancers, scientists can understand why some tumors form. They can watch their growth and see that things like insulin can affect them. But leukemia doesn’t work like that. No cancer is black and white. If the rate of leukemia diagnosis are increasing, doesn’t it make you wonder what else is happening? It isn’t as simple as diet, or even environment. It may be both and it may be much more.

As I prefaced all of this with, I am not trying to offend anyone nor am I angry with anyone. I admit I’m very uncomfortable with the idea of posting this because I know it could be misinterpreted. But after the two long, difficult years I have been through (704 days!), I felt I needed to say this.

I have a lot of fun stuff to report today. Most importantly, I want to talk about the virtual run that I – WE! – are doing with the 10 runners from Ulman Fund/Rev3 to raise $100,000 for Ulman Fund programs to support young adult cancer patients. These 10 amazing runners are running for 21 days from Oceanside, CA to Washington, DC, covering a total of 3,080 miles! They began on March 26 and will finish April 16th. In support of these runners and Ulman Fund, I started a team to complete a “virtual run” in which we will run each day they are running and record our miles. Teams may also fund raise to add points to their score. At the end of the 21 days, the virtual team that has the highest score wins. My goal in doing this is not to win, but to show as much support as possible for these people that have trained so hard to do this incredible journey as well as raising awareness for the Ulman Fund. Right now we have 20 team members running daily. With only a partial report for day 3, we are already up over 50 miles!!! I can’t wait to see how much distance we cover by day 21.

If you are interested in joining in on the run, just let me know. I don’t think it’s too late to add you. All you have to do is email me your miles on the days that you run. If you don’t want to run but want to support our team and Ulman Fund, you can donate using the link below. Just be sure to mention Team Supergirl.

http://rev3tri.com/america/donate/

I got to “meet” one of the runners over email, just by chance, and it turned out she had blogged about my story. Her name is Laura and here’s a link to her blog:

www.wifemotherathlete.com

Yet another amazing woman that is inspiring me these days. Go Laura!!!

In other fun news, I just got finished designing the men’s and women’s triathlon gear for Team Inspiration. I’ll have more to report on this soon and ways in which you can get your hands on some of this too. As a child I fantasized about being a fashion designer, so this was just too cool of an opportunity. The irony of where my life has gone as a result of cancer never ceases to amaze me.

For a little medical update which involves a slightly gory detail for those who love this stuff … I have yet another rash. It is actually just a continuation of the first rash from January that went away and has now made a feisty return. The dermatologist feels that it is still the drug allergy and gave me a tub (literally) of anti-itch, rash-clearing cream to try. Neither he nor my oncologist were particularly impressed with this scaly, itchy infestation covering most of my body now. Although it is great to be unimpressive, it’s also a little deflating given that it feels so traumatic in my own head. I’m partially kidding. I know it’s nothing to spend a lot of time stressing over, but it’s not comfortable and is definitely spreading. If the cream doesn’t work, my doctor will try changing the med that is the suspected culprit.

Okay, now for the good news/bad news … my hair is starting to come in BUT … it’s white! I have some dark hair mixed in with it but the thicker fuzz that is beginning to cover most of my head is as light and white as snow, no joke. What’s interesting is that some of the longer dark hairs were actually white at the tips. I’ve had hair on my head for a while now that is about a 1/2 long, but I have to keep trimming it because it is so sparse. So I am hopeful – okay praying – that the white fuzz will turn a sun-kissed blond or even brunette. It feels a little like a kick in the gut to go prematurely gray at 36 after all of this. I’m not fretting over it because I have read many stories about hair coming in one color and completely changing to something different. I just hope it does it sooner than later. I’m getting really sick of my hats. But I am grateful that it is starting to grow.

Now, in all seriousness, I do want to say how grateful I am right now. I have spent a lot of time these past few weeks being really caught up in stress, anxiety and some depression over various symptoms and some things going on in my life. Nothing terrible is going on but true to old habits, I quickly got wrapped up in worrying about things that weren’t that important. As I mentioned in my last post, there have been a few things that helped get me out of that rut. I am grateful that I am able to see a lot more clearly now, and most importantly, I am grateful to be alive and in remission and to be surrounded by my always amazing group of friends and family.

I haven’t given up on blogging. I’m still here and kicking but my time has become severely limited as has the functioning of my computer. So at nearly midnight on a Sunday night, I finally have a minute and my iPad and I’m attempting to do an update. Things have been going well with my health. I actually had a week off from the hospital so I have nothing to report on with regards to my numbers. However, I have been dealing with some issues that I am eager to discuss with the doctor on Tuesday. My skin is a mess again. I don’t have the rash that I had in January, but I look like I have a bad sunburn and lots of rough, scaly skin on my face and neck as well as a few good bumps and splotches in various places. It could be GVHD or it could be a drug reaction. Either way I would love some relief from the itching and the dryness. I’m also dealing with some stomach issues that are a little bothersome. Again, this could be GVH. I know all of it is treatable so I am not panicking.

I wish I could say that I have been walking on water since receiving the good news on my last biopsy, but I haven’t been. The side effects of recovery, the isolation, the insanely slow growth of my hair and some big challenges with day to day life have made things feel pretty stressful. Part of the reason that I haven’t been blogging as much is because I have been really upset with myself for letting all of this get to me. I’m not stressing about cancer but I’ve been stressing about what impact it has had on my life and my family’s. I was at a place where I was at peace with all of this and in the last few weeks I have just really struggled. Some very dear friends have given me lots of guidance. I also watched an incredible video abut another cancer survivor who is in complete remission now and very much at peace with the perilous journey she went through. I will share more about that in another post. Additionally, I braved the Internet and did some research on GVHD which led me to a very comforting article about the emotional struggles that so many transplant patients in my situation go through. I was relieved to discover that they share many of the same things I am feeling. I think I need to find more of these people to connect with.

Despite how it may sound, I have not been sitting around being stressed for the last two weeks. I have been out and about quite a bit including bike rides with family, some shopping and a trip to DC to see the museums and the cherry blossoms. I also had a very nice date night with my husband and ate in a restaurant!

I have quite a few more updates I want to share but need to get to sleep. I’ll post more after my doctor’s visit this week. Take care everyone.

Well most of you have heard by now that my biopsy results came back today and were great! I am in complete remission with normal chromosomes and 100% donor cells. My blood counts are also working their way up and my platelets are at 150,000 for the first time in over 2 years!!!! That was one of the numbers I have been waiting for. I was so hesitant to say anything about it because I didn’t get the paper report about the chromosomes today. My doctor spoke to the lab on the phone this morning and told me that he confirmed that everything was normal. The last time I found out about the chromosome issue I was told that everything was fine and then went in the next week to find the paper report had delivered the bad news. So I hounded my doctor and he was clearly frustrated that I didn’t believe him! Thus my delay in spreading the news was because I was afraid to share something great and have it come back to bite me in the behind. But Brian had spread the word on Facebook before my doctor even finished explaining things to me, so there was no taking it back.

I think that I was stunned at first. I was thrilled, obviously, but having one of those moments where you want someone to pinch you and tell you if it’s real. It wasn’t until I started to write a text to my friends that I burst into tears of joy realizing that I might actually get my life back. Everyone is asking me about when and how I’ll celebrate and I’m so afraid of doing that because I don’t want to jinx anything! But I realize that this is a moment worth celebrating and savoring. So any ideas for a party are welcome! A vacation would be wonderful.

I have been feeling a lot better lately. I finally kicked a sinus problem that had lasted for a couple of weeks. Lately I’ve been running 3-4 miles a couple of times a week. Yesterday I got to run the Iron Girl course for the first time this year with Roseann. She then took me to the future home of the Healing House we are working on. It was pretty amazing.

My doctor has cleared me to get out a little more and it is definitely helping to improve my mood and outlook. I did my first grocery trip last week, have gone into a couple of stores to shop and eaten food from restaurants. These are little things that are now big adventures to someone like me who has been housebound for the past 3 months. Tomorrow I am going to be brave – and VERY cautious – while I go see Ty’s play at his school. My doctor probably wouldn’t approve but I plan to stay behind the crowd and not mingle too much.

Life is definitely good right now. I think a lot of my anxiety will settle now and I can focus on feeling better and taking care of my family. Thank you all for continuing to follow along. I’m sorry I haven’t written much lately but I haven’t wanted to. I have been trying to avoid thinking about all of it while I waited for my test results. Writing about it would give me too much time and space to ponder. It was better for me to absorb myself in other things these past couple of weeks.

One more time, I must thank my donor. It is weird to think that my bone marrow has now been entirely replaced by her cells. All of it is amazing and overwhelming. Thank goodness for her generosity, thank goodness for science and thank goodness for all of the miracles that occur each day!