Deb's Update: 3/1/2008: 10:00 AM EST

Hi All,

I figured I was way overdue to write the blog update so since I woke up in the middle of the night and cannot get back to sleep, I figured there's nothing else to do! Here goes...

Hopefully you have seen my sister's message that my last MRI done on Feb 25th was better than the January 3rd one! What a huge sigh of relief for everyone (me, my dad, Charlie, the chemo nurse, Dr. Cloughsey, and the rest of my friends and family). Dr. Cloughsey unfortunately sent a nurse practitioner in my room before he came to see me which actually scared me before I saw the results... I heard her talking out in the hallways to another nurse practitioner about me completing 6 cycles of CCNU (totally wrong!) and that Dr. Cloughsey was going to want me to go onto Carboplatin (wrong hopefully) and that they would look over my chart to see about getting me on a clinical trial (no way Jose in my opinion!)!!!

Thankfully it ends up that they didn't have any up to date records in their personal computer about me! The CCNU was the stuff that I became sick on... not sure if you remember the major rash, the headache and vomiting which then showed up as a major tumor size increase in the recurrence area. The intention of sending those two nurse practitioners in my room was just to have them do the neuro exam. I was still nervous because they really didn't say much to me in regards to my MRI results or what the treatment was going to be the next time.

As always the next step is to have Dr. Cloughssey come to the room and have me (and my supportive guest) head down to the room to see the MRI results on a huge screen computer that you get to compare 4 MRIs on! So, Dad and I followed him down the hall which seemed like it took FOREVER and once we got there, we thankfully heard Dr. Cloughsey say "your tumor shrank". He continued to show me the comparison between the last 2 and 3 MRIs viewing the entire scan both in contrast and not. It was hard for me to tell what the percentage of shrinkage was so of course I had to ask him if it was greater than 50% or less than a 50% reduction? Greater than 50% reduction is a partial response and that is what I desperately wanted but he basically said the shape has changed since the last major swelling is down but he can obviously tell that it is responding to treatment! It is unclear if the response is from the chemo or the radiation, or both combined. I guess it doesn't matter what it was, but I will continue on the chemo/ Avastin combination.

A big, big, big sigh of relief for me and my dad that day at UCLA... After the Dr. Cloughsey discussion and all of the good news phone calls that we made, Dad and I went to the chemo area for me to begin cycle 2 of the Avastin/CPT=11 combination. The chemo treatment was done at 3:00 PM and we were able to head up to Thousand Oaks without being in the 405 freeway rush hour traffic.... I knew it was a good day!

I'll have to take a step back to let you know how the end of Cycle 1 went, the RT, my dad's visit, etc... I just couldn't help but start with the MRI! Chemo side effects seem to be the same each time that I get that stuff! I start with a gurgling stomach during the CPT-11 dosing and for some reason I have to urinate like a racehorse during that 1.5 hours of that stuff... Of course I have to make sure that I go to the bathroom right before I leave in case I'm in major freeway traffic... The other side effects during the IV dosing is that the CPT-11 also causes some twitching in my body/face muscles which is totally weird but it literally just happens during the IV and not afterward thankfully. Again, that chemo causes me to have some cramping in my feet which is somewhat painful and usually starts to occur around 5 to 7 days after that treatment. I can see/feel it coming on and I just brace myself and try to stretch it out. That cramping hurts more than I would imagine, but it usually only lasts for about 5 minutes. However, it's on and off, so I just focus on keeping my feet stretched out and massaged on the arch area.

On another note, I finished the RT on Monday, February 18th. Again, what another great day feeling that I was able to be make it through that tough 25 day treatment. I was able to continue to do the RT at 7:15 AM in the morning and still stick to my 'normal' work schedule. I usually work from home about 3 days a week and in the office 2 days. It keeps me going to head into the office to see everyone, to attend meetings to learn about all of the changes that are upcoming in the year of 2008. The one thing that is really taking my confidence down a bit is the hairdo that I have now! Way too much bald areas after this RT is all I can tell you. I didn't think that there would be such an area that was missing so much hair. Think of it this way: the last RT bald picture that I sent you last year is nothing if you saw this post-RT bald scalp! So, I guess I shouldn't have gotten a haircut where she trimmed and whisped it, huh? I guess it'll grow eventually. In the meantime, I told my dad that I should just do a comb-over to cover my lovely pink scalp! He said it's not too obvious but I guess that's what your friends and family would say, huh? Good support is not a bad thing!!!

So, no haircut pictures coming unfortunately, but maybe it's time to start taking pictures with some hats on? I obviously wear a baseball hat while walking the dogs for hair and sun reasons but I have also purchased a few hats to wear out and about at the mall or someplace like that. I won't wear a hat into work, but I did get a few large cloth type headbands which are technically my "comb-overs"!!! Hopefully the hair will start to grow back in the next 3 months or so. I will definitely keep you posted on that one... you all know how hair vain I am!

Let's move on to the steroid usage... both Dr. Cloughsey and Dr. Ahn (the RT Oncologist) want me to start going down on that dosing again. On Monday I will go down to just 2 mg in the morning (half of what I am taking in the AM now). I'm not sure how long that'll be before heading down even more, but I do know that the weaning off that stuff takes time. I have already started to notice (just slightly) the swelling decrease in my face has decreased a bit after stopping the 4 mg evening dosing... I have also definitely noticed that the stress and overactive energy has gone down a notch too so that is another plus of getting off this steroid.

I can't wait to get back into the routine dog walking and yoga which I have not been doing often during the last few months... Since my dad left on Wednesday I have gotten back into the dog walking groove. The good news is that both Radar and Nala were able to walk daily with my dad so they were happy during his visit. I just have to take it one day at a time since I wasn't speed walking for the past 3 months every day! It's time to get my muscles back on track which as you know is not a quick process. But hopefully since my body has been in shape previously, it'll get back into it's groove quickly!!! I will try to add the yoga to the evenings because it's relaxing and a good way to calm me down prior to heading to bed.

I wish I could move onto the subject of major socializing but I can't! Can you believe that one? Honestly, the item that I was focused on was eating and cooking during the past few months. Now I have to figure out what the heck I will be cooking since it's just me! I guess I have to half the recipes so that I don't eat Udon Noodles with vegetables 6 times in a row!!! I'll figure it out but that'll challenge me since I'm not really into portion/serving sizes... I do not want to have to buy new Summer shorts or pants due to my "big butt" !!!

Charlie is in between jobs so he is happy that it is easy for him to come up to Thousand Oaks to spend time together. Since my dad is not going to be here, Charlie said he will go to UCLA with me when I get my chemo until he starts work again. Who knows what card game we'll play with just the two of us but I will take suggestions! It's going to feel good to get into the routine of Charlie and I heading out to Santa Monica for a beach walk, doing our relaxing errands at Target together or eating a nice dinner (he's a good cook!) either at home or at a nice restaurant (he refuses places I love like Denny's!). I will keep you posted on how things continue to go with Charlie. My hope is that he doesn't get a new job out of the Los Angeles area, but I know that whatever is supposed to happen will...

There is one thing that I have planned to do after my next dosing of chemo: I am headed up to San Francisco for 5 days to see Ant and Paul. I got a cheap ticket through Southwest so I figured that I would just head North via a flight instead of driving. I always look for cheap flights to Houston to visit Jodi and also to Providence/Boston/Hartford to head back East for a visit, but I haven't been able to get those two trips planned. I also have to make myself relax a bit more per my doctors so I need to follow their guidance... they know what slowing down will do to help my immune system more than I do I'm sure! Interestingly enough, the RT is a treatment that does make people tired over time even though I have finished it... I have noticed that I am more tired these days.

And one final thing: I did reward myself to get a new outfit!!! It's all about the store Anthropologie where the clothes are both unique and very "Debbie" ...

I will try to write blog updates as often as I can, but with just doing the chemo every two weeks and MRI every 6 weeks it just doesn't seem like I have much to say. The next chemo dosing will be Monday, March 10th and then March 24th. The next MRI should be on April 7th...

That's it for now... it's finally at least 5:30 AM so I think it's time for me to meditate and then eat breakfast! Or, maybe I should just lay in bed to see if I can go back to sleep!

Hugs to you all...

Debbie