Tomorrow it will be a week since I got home. I’ll have an appointment with my local oncologist for a blood test. I’ll have a weekly blood draw until I go back to Duke in about 3-4 weeks. I don’t even remember when my appointment is, so I’m counting on them sending a reminder!
I think it will be a good long while before I leave home again. I keep finding things that remind me not to trust people. For example, in my back yard someone took an old broom and burned the end of it off. There’s an ashtray on my deck with cigarette butts in it. Things are missing (including prescriptions like percocet and xanax).
I have some lingering side effects from the SCT. There’s fatigue, which must be from anemia (I’m guessing). My eyes water constantly. I have a lot of trouble getting to sleep at night. The first several days I had achy legs, but that’s better now. I have what looks like mild rosacea. I feel like I lost muscle mass while I was gone, because my legs are weak. I’m walking every day, but probably not as much as I should. Last, but not least, my GI tract is still not normal. I was told it could take up to a month for that to get better. I plan on writing more about what the mucositis was like. I’m just not sure when. My concentration is weak, so writing is a chore. Oh! If you’re waiting for a reply from me via email, I promise to get that done soon.
Give yourself time to feel better. Hope to hear more from you soon.
Hi Beth,
I hope by now you’re feeling a little better than when you posted. David’s progress seems painfully slow. Often he has bouts of malaise
that keep him horizontal for large parts of the day. I see slow progress – I’m just impatient. He’s outside pitching to one of our twins now – that’s a good thing ! I think he’s having side-effects to the mucositis too. He has a little trouble swallowing and “tightness” in his throat. Neither of his oncs has any ideas about this. Also, ANY pressure on his skin causes a sore to form that takes several days to heal.
We’re trying to keep a sense of humor about it – true “sick” humor, guessing “what’s next”.
Humor really helps us deal with a lot of stuff. I watched “Elf” this morning with my girls and laughed my ass off. I felt great for hours. I hope you’re feeling great soon too.
best wishes,
Patricia
It took 6 months for my m-spike to all but disappear. At one year, it was gone. IGG still stays mid-normal after the tandem scts.
The trends are what to watch and don’t panic or get too impatient. Take care.
I hope the rascals that broke in get caught and taken to task.
Eric Vogt
Beth,
Sounds like you are doing great. You will start to feel better just a little each day. It’s slow progress, but soon it will be better and you will get your strength back. I’m still working on it!! Take care, we keep you in our thoughts and prayers. Gary and Amy
Hey Beth, I was beginning to think you were superwoman and just flying through this thing called SCT. Relax and don’t fight it, recovery takes time, you’re still setting records with your comeback.
Jude
BTW, I saw miracle man, Dave Venezzi today @ the UCLA clinic and he looked great. Talk about a tough 2007 for him!
Beth,
Glad to hear that you’re enjoying home. I, too, am home now. It is great to be in my own space. Mostly I feel pretty good and even came into the office for a bit today. I still get nausea (Day +29) and am waiting for that to go away.
Take good care of yourself.
Janet
Beth,
As I wrote you before, every next day you will feel much better, please belive me :-)
best regards
Jarek :-)
That’s such a sad disappointment, finding that someone took advantage while you were gone. I’m so sorry that you have to deal with that.
But if email is evidence, your mental faculties are just fine thank you, concentration seems dandy.
You are a strong person, making an amazing recovery from a near-death experience. Congratulations!