Wednesday, July 21, 2010

Life's a Dance

As I prepare myself for tomorrow's NIH visit I'm thinking of two country songs: Garth Brooks, "Standing Outside the Fire" and John Michael Montgomery's "Life's a Dance". Both are ultimately about living life to the fullest and when we take a fall, we need to get right back up and jump back into life for more. I am using the lyrics from both of these songs to give me the courage and strength to fully understand what the doctors may tell me tomorrow.

From all the research I've been doing, if I have any form of MDS it will not be an easy road to recovery. Tonight I don't know the details: if I do have MDS, how severe it is, and what treatment I will need. Tonight is the great unknown for tomorrow may bring great relief or great sorrow. I just hope I am able to handle the results and be able to understand what all of my treatment options are. I also hope the doctors have their answers and have come up with some sort of game plan and that this is treatable.

These past few weeks have been a struggle. I've had doubts and am facing a number of fears. It's been much harder than when I was diagnosed with NHL. For the past few years post-chemo, I've been feeling healthier than ever. I've run a number of 5k races and an 8k (and have beaten people younger than me). I work out twice a week with a trainer and have gone so much stronger. To have all of of that taken away from me in such a short amount of time has been difficult. There's another song on the radio now called, "Billionaire" and Travie McCoy sings about how he wants to be a billionaire, be on the cover of Forbes Magazine, and smile next to Oprah and the Queen. Well, I'd give anything to have good health. I don't want to be a billionare. I just want to grow old. Is that to much to ask?

Life's a Dance Lyrics
The longer I live the more I believe
You do have to give if you wanna receive
There's a time to listen, a time to talk
And you might have to crawl even after you walk
Had sure things blow up in my face
Seen the long shot win the race
Been knocked down by the slamming door
Picked myself up and came back for more

Life's a dance you learn as you go
Sometimes you lead, sometimes you follow
Don't worry about what you don't know
Life's a dance you learn as you go

Sunday, July 18, 2010

The Asteroid

I feel like I'm in one of those asteroid movies and I'm standing on the beach waiting to see if the asteroid is going to hit the planet or if Bruce Willis is going to blow it up in time. I had a CT scan on the 8th and then went to clinic to meet with the doctors in the afternoon. George, who performed my biopsy, was the fellow who examined me. He peppered me with all sorts of questions while examining me and I knew I was going to see Dr. Wilson to explain the biopsy results.

Dr. Wilson explained that I might have something called Myleodysplastic Syndrome (MDS). Essentially my bone marrow is showing damage from the chemo, which they had not seen on the EPOCH protocol. It's also typically seen in adults over 60 and in men. I am an anomoly. He used a lot of big words that I didn't quite catch, but they needed to do more tests to determine how servere it is. On the less severe side, I could have no problems for years but the more severe side could into acute myelogenous leukemia (AML). In addition, my medialstinal and my liver are enlarged. Since my NHL started in the medialstinal, I had a PET scan last Wednesday to check for cancer cells. He also talked about possibly needing a bone marrow transplant, so I had genetic testing done last Monday and another bone marrow biopsy/aspiration. They also mentioned my brother, Michael, might need to get genetic testing to see if he's a match.

I go back to NIH on Thursday to find out the results of all of my tests. I am understandably shaken by this news and I am having a hard time dealing with this news. I am hoping Bruce Willis blows up this asteroid before it gets here. Mike has been a rock as usual, but he is just as shaken as I am. All of our summer plans are on hold until we know what we are facing.

Here's a link to MDS to explain it:

Tuesday, July 6, 2010

That's Not All...

So, I had an MRI with some funky stuff on it and finally decided to follow up with my nurse practitioner after my disastrous 5k race where I did just fine for the first mile and then felt like someone sat on my chest for the next two. I could not breathe and even when I slowed down to walk I felt like my lungs were the size of dimes. Near the end of the race I started talking to myself and trash-talking my tumor (Priscilla, if you remember) and threatened to kick her butt if she planned on coming back. I threatened her with a good beat-down, so let's hope it worked. I finished the race in a run but in tears as I seriously thought (think?) Priscilla may be working her way back. So I called the doctor's office the next week and made an appointment.

Betsy, my beloved NP who sent me to the cardiologist's back in 2007, listened to my issues and read my MRI report and suggested I get some blood work. I got the results back the next day and she said the results were "not normal, but not terrible". Everything was low: platelet count, hemoglobin, WBC, absolute name it - LOW, LOW, LOW. I called Doug at NIH (and Peggy my caseworker) and read them both reports. In the end, Doug called back at the end of the day on Friday and said the team needed me to do a bone marrow biopsy.

After a few scheduling issues, I was set for the biopsy on July 1 with a follow-up on the 8th. Since my 6 month check-up was supposed to be the 15th, we moved it to the 8th so I could get the CT done and all the results on the same day. I did the biopsy in the special procedures unit - I'd been there before (for a PICC line installation that thankfully never happened and something else I don't remember). George is the NIH bone marrow biopsy rock star so he and an assistant (who kind of sucks) did the procedure. Mike found a chair and perched above to watch the whole thing. He didn't pass out, although I thought about it myself. It was painful, but not a sharp pain but an uncomfortable kind of pressure that went on for far too long. Mike said that they assistant wasn't strong enough to muscle it and she was having a hard time getting through my bone. Plus I felt a small sharp pain and one point and she said, "Oops, I missed a little". NOT what I want to hear. George finally stepped in and it got a little better, but not much. Also, since I work out and am in pretty good shape it was much more difficult for them to get through my bones. Lovely - one downside of working out.

I got it done and was sent home with instructions to take Tylenol if it hurt, which I did that night. I was also not allowed to immerse myself in water for the past 7 days (no swimming or hot tubs), which sucked considering I went to the Chester River on the Eastern Shore for the 4th - swimming, tubing, water skiing, jetsking. Not for me. So, now I wait until Thursday. I am nervous and worried, but I really try not to think too much about it. Mostly, I think about how I will react to bad news and what that would mean. I really just hope that I'll need some kind of shots to bring up my counts and I will take that over chemo any day. Either way, I will deal. I have to. I'm just hoping for a Happy Birthday next week - and that's the best I can do.