Saturday, February 25, 2006

Feb. 25, 2006

Hi there everyone.
My aversion to things electronic is ebbing, so I thought it's time I actually wrote something on my own blog. Not sure where to start since Jaci has been doing such a thorough and excellent job with this. I guess I'll just ramble and ask you to excuse possible lapses of organization or flow.
Yesterday, I had my favorite two procedures, a bone marrow biopsy and a lumbar puncture. Gripping the hands of Jaci and Erin, the first went very well- completely tolerable pain and I even got to see the bloody apple-core looking biopsy that they took out. Cool! The lumbar puncture had been messing with my mind because past effort were difficult, lengthy and caused surprising sensations due to sensitive nerves in the area. I'm not sure if it's because it was my fifth one or because of the beautiful sedative they gave me, but yesterday's went off without a hitch.
Let's see, not much else to complain about. My hair is definitely falling out, not so much that you can really tell by looking at me, but more by looking at my sheets, pjs, and pillows. I hope that I am not in denial but am in fact a decent enough human being to realize that losing one's hair just really isn't that big of a deal in the grand scheme of things. Since I will be doing chemo and radiation for quite some time, even after I leave the hospital, I'm not sure how long I will sport the Sinaed look. I am having trouble deciding whether I want to wear a consistent wig so as not to be so "look-at-me!" or if I should be just me, a girl without hair, for a while. Silly considerations all.
The more important consideration right now is still my white blood cell count. When I get up to around 500 healthy white blood neutrophil cells, I can actually leave the hospital and continue my treatment on an outpatient basis. Right now, I'm not even close. However, things look good for an early dismissal. The doctors won't promise anything, but I could be released as early as day 21 instead of spending the entire 29 days here.
Not that days here are so bad. I literally spend 99% of my time in bed, but am suprirsingly ok with that. There really is no where else I can or want to be. To get up takes great energy and to leave the room I have to transform into Bubble Boy even just to traverse this already air-controlled floor. I wear special socks that go up my legs to prevent clots from laying/sitting all day and have added a thin air mattress to my hospital bed making the comfort situation no problem. I would definitely have thought I'd be more bored but thanks to constant visitors (Yumi just arrived from Hawaii yesterday!), a steady stream of nurses and doctors, more loaned pirated movies than one can find on a Beijing street corner, and mostly due to a much more placid/slow/fatigued state of mind, I would rarely consider myself bored. Plus, I get this wonderful highlight every evening- mail delivery! Bad news travels fast I guess (in a good way?) because I have heard from people that I haven't talked to in ages. It's just wonderful and lifts my spirits immensely.
I'm a little nervous because tomorrow, Jaci leaves for L.A. for a few days. I know everything will be fine, but that girl knows where everything is in this room, what time I need what, who's coming when, and juggles it all with panache and grace. It'll be good for me to accelerate my independence a notch though. AND, through undoubtedly selfless and difficult maneuvers, Bess is coming to fill the slack. I know that she has work obligations that she is somehow sacrificing and balancing and I am amazed and so grateful!
Speaking of selfless and suprising acts of complete kindness, my friend Erin Moneymaker is driving out Jaci's moving truck with her Honda in tow and puppy in shotgun next week. It reduces our moving costs and, most importantly, gets furniture here in time for my release from the hospital. I can't believe she was able to make it work with her flight instruction schedule and is happily looking forward to the 44-hour jaunt cross-country. How does one repay one's friends for such things someday? My joy is that I will have my lifetime to do so for each of you.
So, Jaci has found us a nice townhouse on the Brighton/Brookline border here in Boston. It's neither too far from the hospital nor from Fletcher when I'm ready to start taking classes again. It sounds great- two bedrooms, working fireplace, nice kitchen, washer/dryer, parking space. Since I will be spending an inordinate amount of time at home in the next few months, I am relieved that it seems we will be living in a nice place. Not to mention it will serve as a cozy guesthouse for anyone/everyone who wants to come visit!
On an end note, it's snowing here. In my temperature controlled room, all I get is the joy of watching the flurries over the naked tree boughs without experiencing the chill or the wet. Let it snow.

15 comments:

Anonymous said...

It's so good to hear of your progress. I went to a Peter Yarrow(of Peter, Paul and Mary) concert last night.It's my generation. He said that Mary has recovered from leukemia- different type I think- and they are beginning concerts again- one a month for now-but more in the summer. She has lost 70 lb and is looking even more beautiful. You don't need to loose 70 lbs of course.
Love, Enid

erin moneymaker said...

I hope Lola is looking forward to our roadie half as much as I am. Tell her I'll take the first leg and she can navigate and run radios!

Jen said...

Hi Erica,

Great to see you posting on your blog - definitely worth the wait! And hey - the Sinead look is pretty cool, I say. Then again, I AM the one who tried to shave her dog in hopes of making a wig out of the hair shavings. We were, after all, almost the same hair/fur color! Unfortunately, she didn't really go for the idea and made short work of my clippers....

Glad to hear that things are progressing and that you are looking forward to an early discharge - and your apartment sounds very nice!

Ok, I'll post more later. The kids are trying to see which one bounces the hardest off the couch! Take care, sweetie!

Love,

Jen

Anonymous said...

Hey Erica! Just wanted to say hi and that we all miss you. I wish I could visit but I have a never-ending cold. Fletcher classes are keeping all of us busy and leave little time for sleep. I hope you're getting to watch some great movies, and I'll talk to Gioia and see whether I have any that you might like and haven't seen yet. You're haircut looks great from the picture. Best wishes, Laura Zusman

Adam Blaylock said...

Hi Erica -

I heard the news through the grapevine and just wanted to extend warm wishes for a full and fast recovery. Your blog is amazing - Jaci has done such a wonderful job. I've been in contact with the St. Joe crew and some of the guys would like to send you something special. Per your secret service agents over there, it sounds like flowers are a 'No' :) Any special requests? It sure sounds like you are being well cared for out there and have a wonderful group of friends. Please let me know if there is anything that I can do for you. You are in all of our thoughts and prayers.

Best wishes,
Adam

Rosanne Borsch (Richards) said...

Hi Erica,
I was just given your link to this site and am floored. I'm sure you don't know but I was just diagnosed with ALL mid-October. I did two rounds of chemo 5 weeks total hospital time, before being prepped and given a bone marrow transplant via my younger brothers stem cells. I just got home Tuesday from another month long stay at the City of Hope, Phoenix Az ward of Good Sam Hospital here. So I know almost exactly what you're going through! (are you on the linker protocol or hyper c-vat?) And it sounds like you're absolutely doing everything right that you can do - having a positive mindset makes 100% difference in recovery time, plus having an amazing support system is an awesome blessing. Anyway, I too was hoping to send you something and didn't see a hospital name/address or anything. I also wanted to let you know that if you have any questions or need to talk about anything I would love to help in any way possible. I have a friend from church who went through her BMT 4 months before me and I love being able to ask her questions from her advanced experience. But everyone's different :) Sounds like things are on the upswing with you getting to go home soon. Congratulations!
Love,
Rosanne
ps- what are the odds? Do you think we ate one to many pepper jack cheese on a sticks?

Loren Mouw said...

Hi Erica -
Your words and pictures tell me that you sure haven't changed! Despite circumstances, still the smiley, positive girl I remember. Of all the people coming out of the woodwork with recent blog posts, this is probably the most random, but hey that's Santa Maria! My mom told me about it today. She's actually living in MI now, and I in L.A., but Nicole Arce's mom shared the news with her over email. I just wanted to drop a line to let you know that one more person out there is thinking about you and praying for you.

Chester Stiens said...

Just wanted to let you know that my family is praying for you.

artineh said...

Hey Erica,
So nice to read your post (although Jaci, I LOVE reading your updates too!) You look great and I'm glad there is a chance you may be out of there sooner than the projected time, even though from what you say, you are doing well there and not suffering from boredom. I must say I am feeling quite helpless here in my L.A. corner of the world (you know I've never been the kind to get up off my butt and get on a plane) and I wish I could do something more for you from here. Jaci, is there anything I can do to help? Please, please, please don't hesistate to draw me in on the efforts. I would be more than happy to lend any kind of support.

My family and I are going to be out on the east coast in May and I was hoping I could come to Boston and see you (I don't know where you'll be then). would that be OK?

well, hon, keep smiling. I am thinking of you and hoping for the absolute best!
love,
art

Erin Consorti said...

Greetings from California,
Hi Erica...we just heard about you from Adam Blaylock. We are so sorry to hear about this obstical, however knowing what a fighter you are we are confident you will knock the socks off of this thing. Keep smiling and know that we are thinking about you and praying for a rapid recovery.
Best Wishes,
Nick, Erin, Hailey, and Ella Consorti

Anastasia said...

Hi Erica,

This is anastasia, i dont know if you remember me a little, i am the greek girl who is also undergrad, does it ring a bell? I just found about thiss blog and I am amazed as to how courageous you are! You are doing very good job and I am very happy to see your bright smile in the pictures! I will be in touch!

Nick Buckler said...

Hello Erica!! I realize it's been many moons since our paths crossed, and now they are only 'virtually' crossing on some cyber celestion, but that is hardly of any import. What is important? I am certainly not the one to ask, however, I can tell you that it is a testament to your radiance, innate beauty, and strength that I recently learned of your battle. Although you have been hearing and feeling this from everyone I'm sure, you are in the thoughts and prayers of my whole family. Personally, I'd like to send smiles, laughs, and extremely strange jokes your way that make you laugh from your center while wondering what the hell is the matter with me :) !!!!!!
Please accept my hello, my love (no not like that, you naughty girl you) and, I'm sure, all the love from everyone you've ever inspired!!

Nick Buckler
neb9@humboldt.edu

Anonymous said...

Erica,
It's your old friend Ambur! I just found out over the weekend, and was sent an email about your blog site. You are still so beautiful and eloquent and strong in character, Erica! I am so glad that you have such wonderful people looking after you and keeping your spirit up. I would really like to get in contact with you - my email is AmburRozok@netscape.net. I love you my friend and you are in my thoughts and prayers. I hope to talk with you really soon!

Kelly Smith said...

Erica!
I, as the many, many others who have left comments have received this link through the grapevine of St. Joe Alums.
We haven't crossed paths in a long, long time either, but I wanted you to know that you are just such a light to everyone; you always have been, and it looks like you continue to be in every way, shape, and form.
You are amazing and you and your "support group" will hold a special place in my prayers!
-Kelly Smith (krs@penfieldsmith.com)

Belinda Gwen said...

May you prosper Jaci! air bed mattress is a great reflection of your intricate knowledge.