Deb's Update: January 6
th, 2008 9:00 PM
Not even sure where the heck to start…. I guess it would be easiest if I could since or dance a song over the course of the past month and a half, huh? I have to admit 110% that I will not majorly re-read this since I just want to get you some text…. Got it????
Because there were so many things from happiness, personal emotional changes, well deserved time off of work, visitors, email, phone and blog contact from tons of friends and family members….
aaaah, I’m sure you can all see where I’m coming from. So, I will just try to do a summary (you usually know what that means, but this time, there are daily changes so I’ll just try to do a summary so you can see what’s been up…)
Back in mid-November of 2007 when I had an MRI that showed recurrence basically stabbed me…. My emotion was prepared to see that the little dots were gone and they
weren’t. Prior to the MRI, I was happy and that I would just go on my way to smile, dance and joke with everyone from the Chinese food server to the cash register person at the Whole Food grocery store that I shop at multiple times per week. That was not the case…. Being alone after an MRI showing recurrence stunned me. I prepared to fight harder…
I am sure that I have written lots of my opinions on that MRI and what my research mindset was, what I would need to do, what I would need to take for poison/chemo etc… But, I decided to go it alone and to get myself some bigger ‘boxing gloves’ to fight the crap out of this white area! I took the dramatic pictures of the “F%$K Cancer” shirt to the serious but emotional yoga pose outside of my numbered Thousand Oak Tree in my yard… I was determined to fight the hell as much as I could!
So, from the day of recurrent diagnosis I was given an prescription for
CCNU. This was a type of chemo that was just one lovely pill that I would take on Day 1 and
wouldn’t need any more until around Day 42. Side effects of
CCNU were said that they
wouldn’t be too bad: low
PLT counts and several other low blood counts. So, I was told not to
rollerblade…. Bummer, huh? Radar
wasn’t happy about that one! I hardly had any side effects to the
CCNU which made me feel like it must be doing something right…
Around two weeks after the Day 1, I headed to my radiation oncologist to do my CT scan/screening for the next step: Radiation Therapy (RT) plus chemo. I decided to wait until the holidays were over since there was no 100% perfect time to start all that since I was going to have visitors with me from Dec 20
th through around mid February 2008. I would continue to work and see how things could go while on treatment.
Unfortunately, the day after the CT scan on 11/30/07 I began to have a rash and my body was not agreeing with the contrast stuff that I must have received that day. From that point forward, I began to have headaches and was starting to feel more and more tired. I blamed it on the time as the cycle of
CCNU went on. The headaches and nausea/vomiting did continue as time went on beginning around Day 21. Because I really felt like shit, I headed to UCLA to meet with the neuron-oncologist that I was interested in when I first went there for potential research down the line. Thankfully, Dr.
Cloughsey decided to do an MRI on Day 35 (Dec 19
th) to see what was actually in my head.
If you are as smart as I am (or usually am!), you will notice that in just about two weeks, my body decided it was going to run a hellish path to a worsened recurrent tumor!!! There was lots of swelling, some bleeding and the growth of the tumor was around 4 times the size it was in the CT that was done on Nov 30
th! That sucked….. Now my gloves needed to go from being a GIGANTIC boxing glove to being a BRIGHT PINK SOMETHING!!!!!!!
I started on some new drugs that day as well:
Decadron which is a lovely steroid that is making me want to eat about 5 lbs of fudge in two days out of my refrigerator last Christmas/Valentines Day/etc…. I will have to post a picture at some point as you will be somewhat impressed with the round, round and more round cheeks I have now! I’m a bit shocked so I guess I gotta give up fudge, huh? Maybe it’s time for M & M’s???? Interestingly enough, I have a book for people with an A blood type that should definitely be avoiding sugar especially with a brain tumor… so, it’s time for fiber and veggies instead of sugar for me!
So, in the meantime I was continuously seeing all the docs that were in the treatment equation: Local Thousand Oaks Neurologist, Oncologist here in Thousand Oaks, Radiation Oncologist here in Thousand Oaks, the UCLA
Neuro-Oncologist, the Cedars-Sinai surgeon and that may be about it… It’s honestly all I feel like I do these days. There are tons and tons of opinions and they certainly all have what they think would/could be best for me based on the tumor location, the pathology type stuff about it and my current
neuro mannerisms. In all their opinions, they see me as neurologically “normal”-
ish. Whatever that means…. I know I’m not perfect, but if I can stand straight, walk on a fine line, balance and still have strong arms, I will also consider myself somewhat ‘normal’.
Per Dr.
Cloughsey at UCLA, he wants me to start on the
Avastin plus
CPT-11. It is apparently a strong treatment option if you have a certain type of
GBM tumor and they are surprised at how many good results they are seeing. If they can see stable disease in half the subjects that are taking that treatment, that is a great option. So, my fingers are crossed that my body will agree with that treatment.
Dr.
Ahn the RT here in Thousand Oaks’ opinion is for me to start the RT right away as well. He spoke with Dr.
Cloughsey a few hours ago and it is in both their understanding that I will respond to the combo of the chemo plus the radiation that I tolerated well this time last year. On a third note: Dr.
Yu thinks that he can operate anytime since the location is perfect right near the frontal part of the frontal lobe in the left side of my head. He even thinks it’ll be fine to do it directly after treatment… he likes to take crap like that out of people’s heads!
So, as you can see, I finally finished last week with some sense of relief instead of stress, tension and
Decadron/fudge rage! My hope is that by the end of this week, I will have been able to make an informed decision as to exactly what will be done and when to this lovely head of mine J Time to shrink the tumor, time to shrink the tumor, keep on shrinking that tumor……….
I know I have not told you lots of additional details in terms of exactly what is measured, how, when, etc… but at least you can see what the heck has kept me in limbo over the course of the past month and a half!
On another note, my Mother and her friend Helen were here from December 20
th through January 4
th, 2008. They were here for 2 full weeks so it was nice to re-group for me since I was out of work and got to spend some time with my Mother. She did her most important task: She’s the cabinet lady! She re-did the molding on the cabinets in the bathroom so that room is complete! Big hugs for that cabinet process Mom… We
didn’t overdo too much but had a nice time two days after Christmas seeing a Catechism show and going to the Melting Pot for a nice Fondue dinner… the two of them really liked that. Of course, I’m not a big time Catholic person, but I enjoyed the show as well! My Dad arrived the night of the 3rd and should be here for around 6 weeks (give or take what I need him here for). In addition, my brother is coming this week for a visit but again, my intention is still to continue working since it feels good to have a goal of what to do when.
New Year’s Eve this year Charlie and I went to a nice restaurant in Santa Monica which was good. Great food, but I will not get started on the whole reservation thingy….. let me just say, we waited for over 2 hours to sit at a table in a drafted area for the hundreds of dollars of food! I did most of the talking, but it turned out to be a decent successful night. I’m going to leave it at that!
Jodi came out to visit from Dec 29
th through January 1st. It was a short but nice visit since she just wanted to come, hang out and spend some quality time with me. It’s always tough with lots of visitors but Jodi and I seem to figure out how to make it all work
out. I am sure that I have forgotten WAY too much to tell you guys, but I just wanted to do the quickest update as possible and to hopefully leave you guys up to snuff as to what is going on in terms of treatment.
Please continue to ask me questions, give me your support, cheer for me, laugh and cry for me (hell, I do it here and there these days!) and just give me hugs and kisses when I’m going through the tough times. I love you all and cannot wait to see you when I’m back East for a visit…. Don’t worry, I can’t do all the visiting to your own households, but we’ll all have to plan a party!!!!!!!!!
Hugs!
Debbie
