Happy Valentine’s Day! Before I get to celebrating with the 5 males in my life (Dad, Brian, Ty, Kieran and Grady) I just wanted to do a little update. I have nothing particularly exciting to report except that I have very clogged sinuses as confirmed by a CT scan today. I actually ended up going down to the hospital over the weekend because I was having horrible sinus pain and running a low-grade fever. The doctor had started me on another antibiotic but then the fever came so that required a double-check in the clinic. They swabbed my nose inside and out and the test results today showed that I have nothing viral, which is great news. I was a little worried about having the flu or something along those lines. Fortunately, it seems that I just have a terrible case of congestion. My doctor actually thinks it could be related to allergies, which I only started to develop in the last couple of years. But with the weather being warmer than usual this year, apparently allergies are striking earlier than usual. The prescription – lots of nasal washing and sprays. Fun stuff. I’m sure you all are thrilled to learn these details.

I’m almost off of the steroids that I started when I had the rash. Just 3 days left. And today my doctor decided to cut down on one of my immune suppressants which I am thrilled about. I have been having a lot of jitters and headaches and this can definitely be related to this particular drug so I am hoping that I will be a little more mellow in the coming days. Of course I am also keeping my fingers-crossed that no rashes or other graft vs. host issues crop up. My counts have also dropped since tapering down the steroids, but the doctor thinks they are close to plateauing. The reduced immune suppression and the approach of my 3-month post-transplant anniversary should mean that the counts will start to come up and stay up very soon. No more bouncing around. I am REALLY looking forward to that!!!

So all in all things are good. I’ve also been making a few more public appearances. I actually went to my younger son’s school for a conference on Friday. I know, of all places to go out in public for the first time! Fortunately for me, I happen to get tested for all kinds of viruses two days later and we now have confirmation that the outing did not make me sick Just for the record I had the sinus problems before I went to school. I’m still being very, very cautious.

In other news, my hair is not really growing yet. I have some very fine, barely visible hairs all around my head, but I don’t really consider it hair growth yet. The immune drugs could actually be preventing my hair from growing more quickly. My doctor said it could take 3 months for it to start growing. Boy do I have high hopes for March – hair growth, a clean biopsy and normal blood counts! Let’s hope it doesn’t disappoint.

Okay, before I sign off you know I have to do one of my lists. In honor of Valentine’s Day I thought it would be appropriate to do a top 10 list of things I love right now. I say “right now” because there are easily 10 things I love all the time but these are the things I have been enjoying lately, along with some perennial favorites.

1. My family. Goes without saying that all my boys are always at the top of my list and all of them for different reasons. Ty for being Ty, Kieran for being Kieran and Brian for supporting me and putting up with the emotional roller coaster that is me. And of course my Dad and the rest of family near and far. I’m a lucky gal.
2. My friends. My friends rock! I have had so many awesome visits with new friends and old friends in these last few weeks at home. I am grateful for all of you!
3. The song “Good Feeling” by Flo Rida. I heard this song for the first time on the day I was driving home from the hospital after finding out that I was at 100% donor cells. It captured the feeling – this unbelievable feeling that I literally had never had before – perfectly. Not only does it get me through my runs and my rides, but when I start to doubt things, I put it on and it reminds me that no matter how I feel that day, my body is doing what it needs to do.
4. Dark chocolate covered espresso beans. I don’t drink coffee anymore so this has become my caffeine fix.
5. My personal chef Dawn who does her last day next week She’s been awesome.
6. Meagan, my babysitter, friend and all-around savior. Not only is she amazing with my kids, she’s taken on the task of shopping for my ridiculously specific organic, specialty foods at Wegmans. We are all remaining sane and eating well because of her.
7. Evernote. My friend Robyn introduced me to the Evernote app a while ago and I am addicted to it now. It is my way of organizing recipes, creative ideas, projects, everything. If you haven’t used it yet, I highly recommend it.
8. Run Like a Mother. I mentioned it in my last post. Read it and run.
9. Oprah. I’ve always liked Oprah, but in the last two years I’ve started reading her magazine, watching her shows on OWN and following all this stuff on her website. She never fails to inspire me or introduce me to something new. I know it’s a little cheesy but I can’t help but love what she does.
10. Living life. I think that covers it!

Well it’s been a busy couple of weeks. I started working again and have gotten more work done in the last week than I probably did in the last 3 months. It’s been good for me to keep busy. Believe it or not, I’m finding it hard to manage my time and get all of the things done that are on my to-do list. And that’s with the help of a babysitter and a chef! I know, pathetic. On the one hand, I feel like I should slow down a little and rest more; on the other hand, I love feeling normal and productive.

As far as my health goes, we are in the process of tapering down my steroids. This has made some things better and some things worse. For a while I was having terrible jitters and feeling overwhelmingly hungry all day long. I had actually dropped a lot of weight in a matter of days because my metabolism was so revved up. I also lost a lot of muscle rather quickly, which my doctor said was also from the steroids. All of that is improving now and the jitters have started to subside a little. But when you go off of steroids, the side effect is fatigue and I am feeling that. I’ve gone from days where I literally didn’t sleep for almost 48 hours to days when I can barely keep my eyes open. On top of that, I now have a cold/sinus problems coming on and it’s all making me feel pretty run down.

Chip commented that the high I was on last week was a new term he coined called a “cytogasm” (a high from my cytology report). Sorry for the “dirty” language ( ), but that’s probably a good way to describe it. This week I’m not feeling quite so high about it. For every peak there is a valley. But as my friend Amanda and I were talking about recently, it’s all about how you handle the valleys that counts. My platelets had dropped back down to the 70′s on Monday and, although I know it is fine and means nothing right now, it still felt unsettling. I think that the combination of that drop, the fatigue from the steroids and the sinus issues have triggered this slump. The isolation also gets to me. I drive around to take the kids to school and I want so badly to just run into Rite-Aid and buy a pack of gum! But I know I’m not supposed to. I also know it’s temporary.

The doctor explained to me that the reason it is so important for me to be cautious right now has less to do with my immune system and more to do with the fact that I need to be re-vaccinated for everything. At the 6-month mark, they will vaccinate me for several things using “dead” vaccines. At the one-year mark, they will do the “live” vaccines. So until that 6-12 month point, going to places like my kids’ schools is obviously quite risky, especially given the fact that there are a lot of kids that aren’t vaccinated these days. They were just talking about a recent outbreak of measles at the Superbowl. To someone like me, that could be incredibly dangerous right now. However, my doctor did say that it’s okay to get out a little as long as it’s a relatively safe place to be or not crowded. And I do get outside to exercise as much as possible.

The doctor is planning to start tapering down one of my immune suppressants in a week or two. He did say that I should be able to travel over the summer for the vacation, with some restrictions. So I just need to hold tight, get through this winter and look forward to spring. I’m a little nervous about cutting back on the immune suppressants. Although my rash was determined to be a drug reaction, it coincided with the last time we reduced the dose of the immune drugs and it hasn’t returned since. I did stop one other medication at that time (a prescription antacid) that I haven’t restarted, in case that was what caused the reaction. I also haven’t had any green tea to drink. I’m sure that has absolutely nothing to do with it but it’s kind of like when you get sick one night after eating something and you don’t eat any of those same things for a month because of the memory of getting sick. With this new immune system, there is always a chance I could be allergic to things that never bothered me before. We really have no idea what caused the rash but I would rather not take any chances of having it reappear.

Other things I am up to that I am very excited about … I’m working on the journals that patients will use for Cancer Warrior Walking program with Roseann. Aside from getting to work on the design, I am writing a little piece about my story and how to motivate patients to exercise during cancer treatment. My transplant doctor was telling me the other day how hard it is for him to get most of his patients to exercise because they are tired or feeling down. We were discussing the fact that people don’t realize how much better they would feel if they just did a little bit each day. I’m hoping that I can come up with something inspirational to say that will actually help to encourage people to take a little walk each day. If even one or two people get out of bed and do something, I’ll feel like I helped a little.

I am also looking forward to seeing some friends from Ulman Fund tomorrow and finally getting to meet another young survivor named Jess P. that I have been corresponding with over email/FB. We have lots of mutual friends at Ulman who have shared our stories with each other but she and I have never had a chance to meet in person. She’s an incredibly inspirational person with an amazing story and I’m hoping we can team up and do lots of great things for cancer patients in the future.

Lastly, I have put myself in a light training mode for some upcoming races. I’ve been really inspired by reading a book called Run Like a Mother. It’s written by two moms who have full-time jobs and families to take care of yet find the time to train for half-marathons, marathons, you name it. They offer this really honest, humorous and heart-felt look at what it’s like to be a mom trying to do it all, but how important it is that we give this time to ourselves to do something we’re passionate about. I highly recommend this book to any moms who run or want to run or even exercise on a regular basis. You will be inspired. You will realize why it is that some of us are so addicted and why you’ll want to be too.

I have a couple of other creative projects I’m tackling on the side. My favorite one is a book of lists I’m making. I’m not writing this from scratch but working off of Listography: Your Life in Lists. I’ve had a lot of fun filling out lists about all kinds of things – places I want to go and places I’ve been; favorite songs and movies; roommates; motivations and fears; and everything in between. I also am writing my own list of Jessica’s Golden Rules. I think we should all have our own set of golden rules to guide us. As long as we stick to our own golden rules to guide us, we will always be true to ourselves. All of these lists are works in progress, but written with the idea that I want my children to have these one day. It’s not meant in a morbid way, but meant as a conscious exercise focused on the legacy I want to leave. What is it that you want your children to know about you? My journals are a way of letting them get to know me for who I really am and encouraging them to be always be who they want to be.

Okay, back to the grind. If you have a golden rule you want to share, I would love to hear it! Thus far, mine are not complex, just what I have found to be true. For example, …

Rule #2: Always make your bed. It feels like a burden but only takes a minute and you will always feel better walking into your room with your bed made.

Rule #5: Every bad meal can be fixed with three ingredients: kosher salt, butter and Parmesan cheese.

Profound, I know It’s a work in progress, but it’s honest and practical. When they’re finished and edited I’ll share the final list.

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.

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!

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 >