Heartbreak Hill Ahead

Hello again...let me begin by saying that I am really sorry that I have not been able to blog for a while.I neglected to give my entourage "blog access" (this could have been subconscious on my part). I was always going to show them how to do it, just in case , but really thought I was always going to be strong enough to do it myself. Chalk it up to being optimistic. I just returned to the apartment after 5 days in the hospital. I have soooo much to tell you. I have just had a warm bath and am relaxed and happy. I feel good. Del is trying to entice me with decadent neutropenic food so I will keep this brief for now. Here's how it all started...

I always knew this journey was going to replicate one of my marathons...I just wasn't sure which one. Now I know. Boston  Throughout this process in my heart I always knew there was a strong possibility that I would end up in the hospital for a period of time, but I also was very determined to belong to the small percentage of patients who never had to become "inpatient" (and this surprises you??) Unfortunately I hit Heartbreak Hill Day +8 on Friday. We are all in the stem cell clinic and my insides were on fire, I have lots of pain and abdominal distension, my legs look and feel like tree trunks (severe edema), and my feet burn every time they hit the floor...(you cant' believe how similar this is to the actual race!!). All day I cannot get comfortable.They do lots of tests and cannot determine the source of the pain. Side effects like this are fairly normal (and expected) at this point in the treatment. OK...so it was probably one of my worst days so far. Breathe....pray....breathe....pray. They send us home at 5:30 with strict instructions for monitoring (like you had to tell my entourage that!!) and we went back to the apt.  It was a very long night but I woke up Saturday feeling somewhat better...I take a deep breath. It is now Saturday, Day +9. We go to the hospital for my Growth Factor Injection and some platelets. Breath....pray......breathe...pray. I have a good day, still uncomfortable (fluid balance is way out of whack), but pain is gone and I am actually starting to feel stronger. I've almost made it to the top of the hill, through the most crucial days of this process. Sunday Day +10, (I think I can see the gates at BC!) I woke up feeling even better than Saturday. Its July 4th. Del and I go to the hospital early (just a quick growth factor shot today-Yeah), anxious to put this aspect of the day behind us. Fred has come in from Easton to switch off with Del for the day, and Del and Steve are going to spend the day walking around town and enjoying the July 4th festivities. (can I please go????!!!)
My plan is always of course to just be right now, but I was excited for them to go exploring and enjoy the beautiful yet very hot day in the city. I'm going to take a warm bath, have a nap, read, relax and just be. So Fred and I are relaxing in the apartment (world cup soccer anyone!!!), I had my bath and laid down for a little happy nappy about 2:30.  When I finally woke up about 4:30-5 from my nap, Fred came in to check on me and was immediately alarmed when he touched my face. He had the thermometer in my mouth so fast I didn't even have time to protest (OK so sometimes I gave them a little push back! Did they really think I was never going to give them a hard time??)
Now at this point I should probably tell you that part of the "strict instructions" are that if my temp should ever reach 100.5 that they should call the hematologist-on-call right away. When Fred pulled the thermometer out of my mouth it read 101.5! He runs to get his phone while I try to untangle myself from the covers I have been under. Of course I try rationalizing the situation by telling him that I probably just need fluids and that I must be that warm because I was under a cozy blanket and I just need a few minutes for my body to adjust.(no way..I'm not going!!) Fred is of course having none of this and is running around the apartment putting things in a bag. I am sitting on the bed drinking my water and trying to stay calm while we wait for the hematologist to call back.  After about 10 minutes the hematologist calls back and says we should head into the hospital...news I am not very happy with (remember....I was never going to be "inpatient"!) Fred takes my temp one more time as I am angrily throwing some things in a bag (why prepare in advance for something that is never going to happen right)....It is now 101.9. Out we go...Fortunately for us, all of the state police are lined up along Mass ave in front of Symphony Hall to escort the Boston Pops to the Esplanade for the big July 4th celebration. Sensing that they were just a little "preoccupied", lets just say it took Fred less than 3 minutes to make it all the way down Mass Ave to the BU Emergency Room door. We get inside and find the triage nurse who once again pops the thermometer in my mouth...103! I'm kinda not feeling so good right now....can I stop running now???
I have so much more to tell you, but my bed is beckoning me...I am soooo happy to back here tonight. Breath....pray....breath...pray

Love to all,
Cheryl