Amy's (Deb's sister) Update: Feb 25th, 15;15 E.S.T.
Debbie's MRI today was great! The tumor shrank and she doesn't have any more swelling. So, she can (slowly) come off of the steroids! Yeah!!! She will have a repeat MRI in 6 weeks. GO CELEBRATE, DEBBIE! I think a new outfit is in order.
Sending you lots of love,
Amy
Monday, February 25, 2008
Friday, February 01, 2008
Deb's Update: January 31, 2008 16:30 EST
Hi all,
It’s finally time for me to give you an update, huh? Not too much to tell you except for what I do day to day medically, work, and socially.
So far I have undergone two treatments of the Avastin and CPT-11 chemos. It hasn’t been that bad, but it seems to be just a full day to head to UCLA for lab work followed by lunch and then the 3 to 4 hours of the IV treatment. This type of chemo combination will be given every two weeks so as of right now, Friday is the day of treatment. I have had two treatments for this cycle so far: Jan 11th and then Jan 25th. The side effects seem to be consistent per treatment: scratchy throat for a few days after dosing, cramp in my arch of my right foot (weird, huh?) and it seems like my skin is getting really dry. Don’t laugh, but in some locations like the elbows and hip area I’m like sandpaper queen… not lovely areas to touch!!! In addition, my sinus and nasal area is stuffy so it’s hard to realize if it’s due to the chemo combo or if it’s due to the chemo PLUS the radiation.
I have finished 14 days of the 25 days for the radiation…. So, it feels good to be over halfway done. The bad news: the hair pieces where the radiation is going are falling out… same as the last time but at least it’s a smaller area. Hopefully my hair that is not affected will cover the bald area! Thankfully, I was born with a bunch of hair so at least I still have enough to look “normal” if you can believe that… Sit down when I tell you this one: I seem to be close to weighing 150 lbs instead of the 132 lbs I weighed before starting the steroid crap!!!!!!! (And believe me, it’s NOT MUSCLE!). It’s fluid retention and I’m sure it’s extra fudge fat, pretzel fat and God knows what else… The recent good news is that I’ve just started to go down on the steroid dose which will be a slow process, but I cannot wait to get to the end of it.
But, there is some good news in regards to the new face shape and hair… I got a new haircut/style! Yup, I decided to have it cut a little different just to bring me up a notch mentally. So, I now have bangs which I straighten and push off to the side and then I have the rest of the hair wisped and curly… it looks cute if it’s not flat after I nap or sleep at night. I’ll try to post a picture of the new hair when I get a chance. My guess is I will wait to do that as I go down in the steroid dose.
My dad is still in town and will be through the last dose on chemo for cycle 1 and the follow-up MRI. The date of the next MRI will be on February 25th… so, fingers crossed that there will be a stunningly small or completely gone tumor! I feel good and both my docs (oncologist and radiation oncologist) think I am doing much better than lots of subjects/patients with a recurrent GBM… so, I continue to focus on beating the odds! I have to continue to focus on what I eat to keep my immune system boosted… so, you guessed it, I still eat lots of fiber (short grain brown rice, oatmeal, barley, beans, etc…) and tons of veggies (and sometimes fruit) with it. Of course there are days when I demand pizza for a meal but that’s been my lifetime staple from the time I was born I would say! I’m sure you COH folks can remember the day I won the pizza eating contest… J Dad will be here through February 27th.
Based on the photos that I used last time I gave you a quick update, my brother Jimmy came out here to visit as well. Jimmy was here a Monday through a Friday (Jan 7th – Jan11th) which was great. I of course am still working, so Jim and Dad did quite a bit together while I was busy working on Amgen’s campus or here at home. Interestingly enough, Charlie decided that he wanted to pick Jimmy up at the airport J He likes my family that he has met thus far and for some reason, he likes to connect to the brother and father stuff! He always comes up to Thousand Oaks to visit for the weekends and hangs out with my dad to watch football, or to work on something in the house… it’s good for me so that dad has someone else to do stuff with too! I’ll even head out and do errands like grocery shopping or going to Yoga while they hang out, nap, and watch sports stuff on the TV. Charlie’s support of what I’m going through continues to amaze me…
Jimmy, Dad, Charlie, and I had a nice time hanging out and playing cards together one night that Jim was here… If you can believe this, both Dad and Charlie liked the red wine when we were playing Hearts! Not sure if you know that card game but it was fun for all 4 of us! A few weeks later I had another party with Kim, Dad, Charlie, Brigitte in which Kim made one of my favorite dishes: a Kim Enchilada casserole… We were all stuffed and happy about the flavor of that dinner. Kim had of course made a great cake for dessert and some of her Spanish rice that I always love too. We then played cards so fun was had by all again!!!
That’s it for now… I actually just ramble and don’t over-review what I write these days. But, I’m still the Debbie you all know with just a little word finding difficulty now! J
Big HUGS to all of you…
Debbie
Hi all,
It’s finally time for me to give you an update, huh? Not too much to tell you except for what I do day to day medically, work, and socially.
So far I have undergone two treatments of the Avastin and CPT-11 chemos. It hasn’t been that bad, but it seems to be just a full day to head to UCLA for lab work followed by lunch and then the 3 to 4 hours of the IV treatment. This type of chemo combination will be given every two weeks so as of right now, Friday is the day of treatment. I have had two treatments for this cycle so far: Jan 11th and then Jan 25th. The side effects seem to be consistent per treatment: scratchy throat for a few days after dosing, cramp in my arch of my right foot (weird, huh?) and it seems like my skin is getting really dry. Don’t laugh, but in some locations like the elbows and hip area I’m like sandpaper queen… not lovely areas to touch!!! In addition, my sinus and nasal area is stuffy so it’s hard to realize if it’s due to the chemo combo or if it’s due to the chemo PLUS the radiation.
I have finished 14 days of the 25 days for the radiation…. So, it feels good to be over halfway done. The bad news: the hair pieces where the radiation is going are falling out… same as the last time but at least it’s a smaller area. Hopefully my hair that is not affected will cover the bald area! Thankfully, I was born with a bunch of hair so at least I still have enough to look “normal” if you can believe that… Sit down when I tell you this one: I seem to be close to weighing 150 lbs instead of the 132 lbs I weighed before starting the steroid crap!!!!!!! (And believe me, it’s NOT MUSCLE!). It’s fluid retention and I’m sure it’s extra fudge fat, pretzel fat and God knows what else… The recent good news is that I’ve just started to go down on the steroid dose which will be a slow process, but I cannot wait to get to the end of it.
But, there is some good news in regards to the new face shape and hair… I got a new haircut/style! Yup, I decided to have it cut a little different just to bring me up a notch mentally. So, I now have bangs which I straighten and push off to the side and then I have the rest of the hair wisped and curly… it looks cute if it’s not flat after I nap or sleep at night. I’ll try to post a picture of the new hair when I get a chance. My guess is I will wait to do that as I go down in the steroid dose.
My dad is still in town and will be through the last dose on chemo for cycle 1 and the follow-up MRI. The date of the next MRI will be on February 25th… so, fingers crossed that there will be a stunningly small or completely gone tumor! I feel good and both my docs (oncologist and radiation oncologist) think I am doing much better than lots of subjects/patients with a recurrent GBM… so, I continue to focus on beating the odds! I have to continue to focus on what I eat to keep my immune system boosted… so, you guessed it, I still eat lots of fiber (short grain brown rice, oatmeal, barley, beans, etc…) and tons of veggies (and sometimes fruit) with it. Of course there are days when I demand pizza for a meal but that’s been my lifetime staple from the time I was born I would say! I’m sure you COH folks can remember the day I won the pizza eating contest… J Dad will be here through February 27th.
Based on the photos that I used last time I gave you a quick update, my brother Jimmy came out here to visit as well. Jimmy was here a Monday through a Friday (Jan 7th – Jan11th) which was great. I of course am still working, so Jim and Dad did quite a bit together while I was busy working on Amgen’s campus or here at home. Interestingly enough, Charlie decided that he wanted to pick Jimmy up at the airport J He likes my family that he has met thus far and for some reason, he likes to connect to the brother and father stuff! He always comes up to Thousand Oaks to visit for the weekends and hangs out with my dad to watch football, or to work on something in the house… it’s good for me so that dad has someone else to do stuff with too! I’ll even head out and do errands like grocery shopping or going to Yoga while they hang out, nap, and watch sports stuff on the TV. Charlie’s support of what I’m going through continues to amaze me…
Jimmy, Dad, Charlie, and I had a nice time hanging out and playing cards together one night that Jim was here… If you can believe this, both Dad and Charlie liked the red wine when we were playing Hearts! Not sure if you know that card game but it was fun for all 4 of us! A few weeks later I had another party with Kim, Dad, Charlie, Brigitte in which Kim made one of my favorite dishes: a Kim Enchilada casserole… We were all stuffed and happy about the flavor of that dinner. Kim had of course made a great cake for dessert and some of her Spanish rice that I always love too. We then played cards so fun was had by all again!!!
That’s it for now… I actually just ramble and don’t over-review what I write these days. But, I’m still the Debbie you all know with just a little word finding difficulty now! J
Big HUGS to all of you…
Debbie
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