Matching Haircuts

Hi Team,


As promised I said I would post some pics of Anthony and my matching haircuts - we went to Chrissy Field almost all day on Tuesday. We took a lunch picnic, some books and some music and laid on our blankets almost all afternoon. I asked a random guy to take our picture and its not the best pic, but the only one I have of us w/ matching hair for now.




Love,
Amy

Wig Shopping

Hi Team,

Don't have a whole lot of time to post right now b/c I need to get ready to go pick up my friend Michelle at the airport (Yay!!) but thought I'd post a few fun pics from wig shopping yesterday. I tried on a bunch of wigs, but to be honest it was about what I expected from a "free" wig bank... a lot of them were matted and looked very wiggy, and/or had big holes in the scalp area that just looked weird. I only found one that actually looked well-made, somewhat updated of a style and real enough that I could brush it out and maybe pin the bangs and look somewhat decent in public. Perhaps I'll play more and go to a shop to look at other ones, but not sure how much $$ I would actually spend on it since I really don't mind going bald or wearing a scarf or hat most of the time.

Here are the pics - The blonde one is the one I took home. My friends Monika and Addie were playing w/ the wigs with me, so you can get an idea of what some of the other ones looked like. Enjoy!

My Exciting Day

Hi Team,

Today my friend Addie came over to work from my apartment and keep me company. We had lunch at a cafe with our friend Corey who fed me more of my heroine, Grey's Anatomy. I'm now officially on season 4 of 5 that are out on video, and this afternoon I watched 6 hours of the show. I think I need an intervention. Hopefully when I finish season five, I will actually start reading books again.

So I was reading some forums on Young Survival Coalition (YSC) - haven't been brave enough to post on there yet, and actually officially join the community of cancer survivors. You would think the reality of chemo and side effects would be enough to kick me into full on cancer survivorship, but for some reason reaching out and relating to other survivors who are total strangers doesn't appeal to me yet.

Those of you around SF know I haven't been shy about wearing my baldness proudly, and telling random strangers to check their boobies. However, I think I'm going to get a wig anyway. The American Cancer Society has a wig bank that will give me one for free, I get to go wig shopping which can be kind of cool, and as I was reading on the YSC forum, it would be nice to go out once in a while and not be the "cancer chick." One really cool thing I'm looking forward to when wig shopping is that in the past I've tried to take a picture of me and paste a hair cut or color over it to see how I'd look... now I can do that really easily! Perhaps I'll schedule something for next week.

Love,

Amy

2nd week and still in the clear

Hi Team,

Still doing well! I keep waiting for the low low that I hit last time and still knocking on wood, but this round has been so much better than the last time around. Yesterday in my first round was the day I went to the hospital, and so far, no fever! Yay! Also, the muscle pain is not nearly as bad as last time, and the bone pain from the shot I had to take was noticeable, but not nearly as bad as some of what I've felt. So overall, very manageable. And, I've discovered that if I take 2 ativan (2-1mg lorazepam) before bed I sleep through the night, which while I understand may be encouraging an addiction, I will take that addiction instead of percocet (havent taken much of that yet at all) and accept my peaceful sleeping through the night.

I did make another stop into my hairstylist on Sunday afternoon and have her officially shave even my buzz cut down to the scalp as far as her electric razor would go. I do look totally bald now - Even the little half inch hairs were falling out ALL over the place, getting all over my hats and shirts and even down the back of my shirt during the day making it really itchy. It's SO much better now that I don't have to deal with that.

Mom went home early this morning - I'm definitely a little sad to have her leave, obviously because she's mom and nothing is better than your mom taking care of you, but also just because now I'm alone in the apartment. It's weird, when I used to live with roommates or past boyfriends I always liked living with someone, and when I moved into my own apartment it felt lonely and quiet for a while. Then I grew to really love living alone and having my personal space. I thought that when Mom came to live in my tiny apartment with me it would be a big challenge personal-space wise, but really it ended up feeling a little more like after I was living with a roommate, just kind of quiet and lonely after she's gone. I'm sure I will adjust back quickly, and plus she is coming back in a month and staying through my surgery.

Love,

Amy

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

Get out of Jail (but not for free!)

Hi Team,

I finally got out today! They released me from my jail cell.... ok maybe that's a little dramatic. I told my dad today they had me tied down to the bed and he was incredulous until I told him it was intravenously (my IV) lol. I guess technically that's not tied to the bed. But I did have to unplug the IV machine from the wall before trying to go anywhere, and then wheel the damn thing around with me everywhere. Nothing screams "sick" than having to wheel an IV behind you. To the side is a pic of me and my good friend Addie who came to visit me. I was feverish and all wrapped up to keep the shivers down.

I am not sick anymore though! White blood cell counts are firmly above 500 for 2 days in a row, and the same for my fever (below 100), so I had marked everything off their list of requirements. The hospital stay did not cost nearly as much as I had thought but you know Kaiser, they always ominously say "but this is just an estimation and you may get billed for a balance." Who knows! You may, at any time, get billed for any amount that our mysterious computer did not estimate. Of course you can't ask that person any questions because this is all passively done by the mysterious computer. So, we'll see.

Anyway, am safely home now, and my lovely mother was kind enough to go get take-out for us of my most favorite soup in the world, Bakwan Malang from the Indonesian restaurant about 8 blocks away, Borobudur. Delicious and has tofu, 2 different kinds of noodles, meatballs, fried chicken dumplings, greens, beef and just about the kitchen sink in it.

I am feeling more energetic as you can probably tell and am looking forward to hopefully a week off and really hopefully a week of having enough energy to actually leave the house and do something (seriously, anything).

Just to prep you all, this week may be the week I lose my hair. My head has started feeling sore - that feeling where your mom puts your hair in a super tight pony tail all day long and then you take it out and move it in a different direction. Just weirdly achy. My friend who has also gone through chemo, Dana said that's the feeling of your hair follicles "loosening" and a few other cancer survivors I know have said it was about 14 days into chemo that they lost their hair... that would be Monday! So am warning you all and my hairdresser that a shaving may be in order next week for both mess and pain-management.

Last note, my kitties are very glad that I was kind enough to come back from my spa-vacation to pet and take care of them. And of course, I love having them hold me down on the couch. Here's one of the cute ones - I have two, this is Brutus and eventually I'll post a pic of Toby as well, although they look very similar.

Love,

Amy

Let's Not be Wasteful

Amy cut off a lot of her hair.

And that was just the first snip!

We're debating what to do with it. Some options:

1. cat toy

2. make-up brush

3. duster

4. new wig for Cancer Barbie

Your suggestions?

~Monika

Haircut day!

Hi Team,

I got my hair cut today! I've actually had this regular haircut scheduled for a while, but decided to go super short for two reasons - first, because it will be easier to manage when it starts falling out and also will help with the shock of going from long hair to no hair.

Come to find out, I actually love my new cut, I hope I get to keep it for a while :) And my awesome hairstylist Kathleen (at the Strand, if you need a new stylist she comes VERY highly recommended), is going to dye it crazy colors on Wednesday, although I did limit her to browns, blondes and reds. We'll see what she comes up with!

Love you all,

Amy