Lots of Updates

Hi Team,

Had a busy last 2 days - Thursday was a full day at Kaiser SF. Did a blood letting - my neutrophils are now back up to 2.0 (2000) and total white blood cells up to almost 4000 which is good enough for another dose of chemo and to get my port installed! We also looked at my red blood cells which were not quite low enough to get a transfusion, but we'll monitor this the next time around. My oncologist said that if we get to a point where we're having to manage too low blood cell counts for both the white and red, then we may lower the dose of chemo I'm getting. But for now, although I bottomed out really low, I seem to have recovered ok, so we're going to do another round of the same.

I had a consult w/ Dr. Liu (oncologist) and he had some similar goals as I did, to keep me out of the hospital, or rather keep my white blood cell counts higher this time - and to manage the pain. This time around I will be doing daily shots of neupogen which basically makes your bone marrow grow faster and produce white blood cells, specifically neutrophils - the type of white blood cells that fight infection and are considered "immune system." The good thing is that since I was in the hospital for 6 days, we know exactly what my low points were and how low they got. The unfortunate part about this is that neupogen is known to cause pretty bad bone aches as it makes your bone marrow grow faster, and compounding that with my major muscle pain from the last round of chemo may be pretty intense. He wrote me a prescription for percocet to try to help manage it, but we'll just take it day by day and adjust it if I really can't handle the pain. This should be interesting!!!

Also got my brain MRI on Thursday evening.. no results yet, but as they say, no news is good news when it comes to that stuff. I probably won't have any results until next week anyway.

Yesterday morning was my port insertion - The point of a port is that they won't have to poke me with a needle everytime I need to draw blood or get an IV or get chemotherapy. They insert a permenant port access into my jugular vein that has a small penny-sized access spot under the skin near my clavicle. I kept trying to figure out what kind of port they were planning on putting in and the extent of information I got was "chest port" - so to answer some of your questions, I don't think I got a power port... they certainly didn't call it that. It was an outpatient surgery where I got to the hospital at 6am, one of those 'hurry up and wait' situations. They had me strip down to absolutely nothing except my hospital gown and socks (was that really necessary?!?) and inserted an IV, then had me wait there for an hour while the surgeons showed up to work. Must be nice. I have to say that watching Grey's anatomy, I feel like I am desensitizing myself to seeing hospitals a lot more. It's totally the same thing as real life right?? Anyway, the nurse gave me what she told me would make me totally knocked out, some combination of versed and pain killers. Unfortunately I must be slightly more tolerant to pain killers than they anticipated because I could definitely feel when they started cutting, yelled at them and cried (I don't often cry from this stuff but I wasn't really in my normal state of mind either) and they quickly injected me with more of something that made me totally sleepy and out of it. I told them afterward that they did a good job making me out of it and they said "I'm glad you remember it that way" ha. So anyway, I have a port now... well, mostly I have a big bandage that is all bloody and taped to my chest now. Supposedly on Monday when I get my chemotherapy, they will flush it out and change the dressing. In the mean time, baths only, no showers. Which I am totally fine with. I love a nice hot bath.

So the other and last big hurdle that I overcame yesterday was my hair. Somehow all of these procedures, pain, hospitalizations, and the most stressful things to me have been the decision to take time off work and the decision of when to shave my head. Seems superficial with everything that's going on, but somehow I feel like I don't have any control over the rest of it, so I can just roll with the punches. These decisions I have control over and it makes it a lot harder! So anyway, lately my hair had been falling out in pretty big bunches whenever I ran my hand through it and I was totally obsessing with when it would start to come out in big clumps and leave bald spots. It is bound to happen at some point, and it was already starting to fall out, so I decided to just rip off the band aid and get it shaved. That way I can stop stressing about when its going to happen. My awesome hair stylist Kathleen did it for me, my friend Addie came along w/ my mom and we made a fun time of it - champagne and chocolate macaroons and of course a Mohawk cut in between. I'll post a pic of the mohawk cut in between as soon as I get Addie's pics as the one my mom took didn't quite come out. I actually don't mind the look now, obviously its not something I would choose if I had a choice, but I have a pretty nicely shaped head and I think I can pull it off. I told my friend Addie we will just have to go get me some more eye makeup and I just need to remember to smile more. Kathleen didn't shave it all the way down to the scalp b/c she didn't want the razor against my head, so depending on how it falls out I may still have to go back and get a closer shave if it starts looking patchy, but we'll see how it goes. At least now I am not stressing about it all falling out as I touch it or sleep on it - and it was starting to hurt at my scalp and it feels a lot better now. Somehow I thought I would be in tears and hysterical over having to do this, but I wasn't. The anticipation was much worse than just finally getting it over with. Whew! Also, my salon is now donating all their cut hair to help clean up the oil spill, so I also made a big contribution to cleaning up the coast!

Love, Amy