Notes From Supergirl

My Diary from the Trenches

Day 678

March28

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.

Day 676

March26

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.

posted under Part 3 - The Allo-Transplant, The Daily Record | Comments Off

Day 654

March13

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!

Day 647

March6

Today was b-day (biopsy day)! It went well. It was relatively comfortable for a biopsy. And now we wait … Ah!!!!

I should have the results next Tuesday. My counts had come up slightly today so that was a good sign. Platelets took a decent jump from 87 to 115 and white count moved from 2.3 to 2.7. At least it didn’t drop any further. But, there were a couple of exciting changes to my protocol today as well. Most importantly, I don’t really need the mask anymore! I do still need to limit my contact with crowds and sick people, but I am allowed to go to the grocery store if it’s early in the morning or late at night. This applies to all outings. Additionally, I am allowed to eat restaurant food that doesn’t contain anything like raw eggs, unpasteurized products, molds, etc. Which means I can go to a nice restaurant for an early bird special :) Aside from that, my only major food limitation is no fast food but anyone who knows me knows that this will never be an issue for me! Unless they come up with a fast food organic, vegetarian place – and I’m not counting on ever seeing that. Yes, I’m the ultra food snob.

So as my friend put it, my leash has been lengthened. My hair is starting to grow a little. I have longer dark hairs that never seemed to stop growing mixed in with very fine, very light blond hairs that you can hardly see but you can feel. I’m a little concerned that they may be closer to white than blond, but only time will tell. It will be an interesting mix for sure.

I’ve also been given permission to travel so I may be off for some family fun in April. I have to do everything with some precautions, but I am beginning to get my life back. I think that a good result on my biopsy would give me the jolt I need to feel like I can push through this. I am almost through the isolation. I can almost see the finish line.