hello to all!
sorry it has been so long since my last update. i had a period of time when i wasn't doing so well. my last two rounds of chemo were really tough. both rounds had to be delayed because of my platelet count. (platelet's are vital for feeling well. they are related directly to bone marrow which is important for bruising, bleeding, fatigue etc... also, the chemo i was on can cause leukemia if pushed too far.) many people with GBM IV are not able to tolerate the entire treatment. a gentleman i know up north had to quit the chemo during his radiation and have a blood transfusion due to his platelet count dropping low. without the chemo, the cancer can progress quickly.
luckily, i am now feeling A LOT better. i had a week where i was tapering down off some of the stronger meds that i am on and had an incident where i wound up being taken to the E.R. by the paramedics. not fun! i do have say that vero beach has an incredible medical system. from the time 911 was called and the paramedics arrived was about five minutes. when we got to the hospital i was seen right away and discharged that night. my father happened to be in town during this time and when the paramedics arrived they weren't sure who needed the help, me or my dad! (it actually wasn't that funny, my poor dad thought i was dying.) i seemed to have given everyone a good scare, myself included. poor Leah had to be called and told i was in the hospital which caused her some anxiety. well, thank God that is all behind us know.
the reason for my post is that i saw dr. nick on Tuesday and had a good report. (plus I'm feeling up to writing which i haven't for awhile.) it turns out i won't have to wear the novo cure helmet unless i have regrowth. www.novocuretrial.com if you go to this website, try to find the pictures of the device. i would've had to wear this thing 24/7 almost indefinitely. i guess that would be better than the alternative, which could be death if this tumor comes back. apparently I've got about a good chance for a recurrence with this type of cancer. my initial diagnosis in July of '07 was for 9-12 months survival. i am now 4 months past that date and doing well. i had an MRI on Friday and as far as dr. Leah sams and i can tell, the tumor site looks good. we will get the official results some time on Monday, but we feel good with what we see. (or should i say, don't see?)
i know a lot of you have been praying for me, which i feel has been instrumental in my recovery. the Lord works in mysterious ways. every incident that has happened since my diagnosis, (good and bad) has ultimately been a blessing. even at first if whatever is happening seems bad, (like calling 911) the end result has turned out good. i can't fully explain all that has happened, but i can tell you that i feel the Lord's presence in my life more than ever before. i can't help but speculate that all of this has happened for a reason that will eventually be revealed to me once i am truly feeling better. i am still recovering from the year of intense chemo therapy. i won't list all the side effects because most of them are unpleasant and nasty. (let me just say that during my really bad week i lost about 20 pounds!) overall every day gets a little better.
i have had a lot of people ask me what i do now with my time. somehow i don't feel idle at all. at the end of the day i am ready for bed! of course, as tired as i am, my bedtime is early. (on the nights i can sleep, that is. some nights i get in bed and stare at the ceiling until midnight or so.) i have had some bad bouts of insomnia recently. that will make you feel crazy after awhile. dr. nick recently changed up my night time meds trying to balance out my melatonin. so far it seems to be working except some mornings i wake up feeling groggy. hopefully that will pass.
since i have been feeling better, leah has been able to take an oil painting class at the museum of art. she loves it! she is very talented and her paintings are beautiful. she seems to have a natural knack for it. i am very proud of her. it's good to see her happy and enjoying her painting.
all in all, the last month has been good to me. with this kind of disease it is a day by day process. so far my good days are more than my bad, which is a blessing. thanks again to all of you who have sent messages and posted. i will get back to those of you who have asked for contact.
God bless all of you!
sincerely,
dan
