It Ain't Easy, but so far so good

So I'm actually feeling better! We're working on my thyroid, my intestines, the fatigue, the "chemo brain" (which I think is actually brain stress related to hormone malfunctions in the body) and my overall hormonal problems. I'm realizing how delicate the balance of the body's inner-workings are. Getting back that balance has been harder than it sounds.

One of my main problems causing many imbalances is food allergies. I had been eating things that didn't make me vomit and my body was developing allergies because I was eating the same thing all the time. I had to avoid eating those foods to which I had grown so accustomed. It was hard to adjust, but I managed to tough it out long enough to "detox" (for lack of a better word). The less I ate those foods, the better I felt. Even better, it's not a permanent change. I can eventually introduce the foods back into my diet. To continue feeling better, I have to limit each food to three times a week. I can actually control the allergies. It's nice to have some control back.

In other news....

I had the port in my chest removed last week - I guess I won't be needing THAT! And guess who's going back to school! I've signed up for classes - I start January 15th and plan to sit for the July 08 NY Bar Exam.

Survivorship

I think "integrative medicine" means different things to different people. When I was an in-patient at MSKCC they had Integrative Medicine, which included acupressure, reiki, (bed) yoga, reflexology, guided imagery, and meditation (and maybe more - i don't remember). Someone would come to your room and perform the aforementioned services. It was supposed to help with stress, anxiety, and pain and supplement your medical treatment.

What I'm doing now, post treatment, is very different than the above "Integrative Medicine". The doctors I am seeing now are medical doctors that treat the whole person and practice complementary medicine (as they like to call it). They don't believe in band-aid solutions (for example sleeping pills for sleep problems), instead they believe in getting to the root of the problem and supporting the body's natural system (like prescribing pills that support the neurotransmitters in the brain that help you relax, sleep, and stay asleep). Of course they run many, many (expensive) tests before they recommend anything for any symptom. We learned (through those tests) that: I have food allergies, I'm in menopause (my body is not producing hormones at normal levels - I am WAY below average - more like an 80 year old woman), I have thyroid problems, I'm leaking protein, I have osteopenia, and I'm deficient in many other ways (a lot to take in at once for me). Anyway, the point being that all the discomfort and problems I am experiencing post treatment can be fixed by giving the body a little help in regulating itself back to "normal" instead of prescribing creams and ointments for dry skin, Ambien for sleep issues, etc.

Last Chemo

Well, my last chemo treatment was on Thursday, October 4, 2007. YAY If you're wondering what's next, keep reading.

NO, I haven't finished school yet, taken the bar or started working.

I think the reason it took me a while to blog about my last chemo is because I don't feel done. I'm still fatigued, having problems with my skin, can't think straight, concentrate or remember and (what the hell - I'll put it out there) I'm in menopause.

Many people seem to think that just because cancer treatment is over that your life can resume and you can pick up where you left off. I'm here to tell you that's not how it works. Not for me anyway. Yes, I have hair and I don't LOOK sick anymore but the after affects of chemotherapy, radiation, anti-biotics, anti-fungals, anti-virals, steroids, sleeping pills, hormones, etc. are apparent on the inner workings of my body. Things are very out of balance. Don't get me wrong, i'm not complaining - I'm very happy to be alive and writing this blog, but non-cancer people must know: I did not just get over a cold. There is still work to be done on this whole person - not just my cancer.

I have started seeing new doctors to deal with the aftermath of cancer treatment. We started with blood tests, urine and stool samples, sonograms of my ovaries and thyroid and I am relieved. My next post will be about what they found.

If it will help someone else, I want to share some personal information (well more personal than I normally get on this blog). I've been keeping these updates pretty general but I think it's time to share what's going on with my body post treatment.

I will continue to post in the hopes of helping other post treatment SURVIVORS deal with their bodies post treatment.

9 Down and 1 Left

So I just had my 9th chemo last week when we got back from Florida. It was pushed back because I had a cold before we left and they wouldn't give me chemo. I also had another bone marrow aspiration. Fun. The last chemo is set for October 2.

Now I just have to deal with the aftermath that this has done to my body. Not quite ready to get back to school yet. I'm easily overwhelmed and it's really hard to concentrate (still). My memory is still lacking... which would make it hard to take a test.

Anyway thanks for sticking with me - we're almost done. I couldn't have done it without you =)

CHECK IT OUT!

Click here to check out
The I'm Too Young For This Cancer Meetup NY!

The Stupid Comedy Show

When:
Tuesday, September 25, 2007, 8:00 PM

Description:
Get Busy Laughing at Cancer's Expense
Gotham Comedy Club
New York City
208 West 23rd St.
Between 7th and 8th Ave.

Admission $100/pp
open bar + show

VIP Admission $125/pp
cocktail reception w/ hors douvres @ 7pm
open bar + show

Virtual Angel $125/pp
sponsor attendance for a young survivor (in alliance with local support groups)

COMEDY SHOW STARTS AT 8pm

Tickets: 212-367-9000
StupidComedyShow.com

Good Report

My health is, as my favorite musicians say, Getting Better All the Time! I have my 9th chemo next week.

Even though I'll still have one treatment left in September, I'm going to Disneyland at the end of the month and then to visit grandmas again. =) Then it's finish law school time. One paper and two finals and I'm done! =D

Young Adults With Cancer Happy Hour!!

SAVE THE DATE!!

August 23rd
6pm-10pm
The Village PourHouse
64 3rd Avenue, at 11th Street

This is a great place to hang out - there's no cover and the food is good!

I'm trying to get an alcohol sponsor so we can have drink specials AND I'm trying to get a water company to donate bottled water.

JEN - DON'T MISS THIS ONE =)

Another Treatment Behind Me

Well, I had another treatment directly into my spinal fluid on Thursday July 26th. I felt horrible until Saturday morning. It's the kind of treatment you just have to sleep off. It's honestly nothing compared to what I've already been through before. Other than that, I'm feeling really well and can't wait to be done! 8 down, 2 to go.

FUNDRAISER ALERT!!

STUPID CANCER HAPPY HOUR!
Thursday, July 12th @7pm
TAJ LOUNGE
48 West 21st Street
New York NY 10010
(212) 620-3033
$15 Suggested Minimum donation at the door.

ALL proceeds benefit "I'm Too Young For This" .org

Hope to see you there!

7 Down, 3 To Go

I haven't written any sooner because there was no new cancer news to update my adoring fans. I have even been feeling well enough to travel. I visited Grandmas in Florida and college friends down in DC.

So I have the 8th chemo treatment in my head this month. Counting down to zero. Other than that, nothing to report on the health front.

New York Magazine

No autographs, PLEASE! If you haven't already seen the spread in NY MAG, you can see it online at http://nymag.com/news/features/2007/cancer/32123/index8.html

For those of you who know me, you know that the writer of my profile didn't capture my personality correctly. I was trying to convey the fact that the world around has moved on and I am stuck in the same place. You know I'm not boy crazy or trying to get preggers. I would also never say MY cancer is worse (not worst as the first line states) than others. Cancer sucks at any age, but little kids are very resiliant and older folks have already lived their lives. BUT for those of us in between, cancer comes at the a time in our lives when things are just getting started. Not to mention each experience with hospitals, drugs, side effects of chemo, etc. is different for everyone and each age group has there own issues (I could write a book about that alone - well I've considered many things while lying in a hospital bed). Anyway, the point I was trying to make is that I wanted readers to consider what it was like for me and others in my position (like they did in the other profiles) and I don't feel she captured it well at all.

And I could have used a whole spread just to talk about all the side effects and crap I dealt with. Her shopping list of ailments didn't convey half of the suffering. It almost sounded like no big deal. Just so you know, neutropenia and chemo brain are not the same thing. UGH!

WOW i guess this is why people have blogs... thanks for reading my rant =)

If you want to support Leukemia research...

Any donations should be made out to:

Memorial Sloan Kettering Cancer Center

in the memo:

For Lindsey R. Brass Leukemia Fund


send To:

Ms. Katie Kotkins
MSKCC
633 Third Avenue
28th Floor
New York, New York 10017
any questions:

call Katie Kotkins 646 227 2511 or email KotkinsK@MSKCC.org

Check out this Cancer Show!

5 Treatments to Go

Tuesday I had chemo treatment No. 5 which means I only have 5 left. One a month. These treatments go into the port in my head (called an OMMAYA reservoir) to preventatively treat the spinal fluid. I felt totally crappy Tuesday night and all day Wednesday. I'm looking forward to finishing the treatments.

Calling Cancer Survivors for NY Mag Photoshoot

New York Magazine is currently working on a very important feature story about New Yorkers living with cancer. I've pasted the info below in case you're interested in being in the photo shoot this Friday. Feel free to pass it along .

For a potential cover, we would like to gather 300-350 New Yorkers living with cancer or in remission, in one place, for an incredibly positive & moving picture. We are looking for people of all ages, and of all races to to be photographed together this Friday April 20th in Central Park.

We want to show the unity of the fight, so we are asking everyone to dress on their own, as they normally would- no organization specific t-shirts. We want the picture to look like a beautiful group of wildflowers. We hope this will help raise awareness & funding for all.

Any interested participants should contact me directly at alex_pollack@newyorkmag.com. We are planning on shooting this Friday April 20, 2007 at Sheep Meadow in Central Park at 10:30AM-NOON. The exact meeting location in the park will be determined Wednesday evening, as well as a rain date alternative location (Sunday, April 22nd), so I will need contact info for all participants right away.

6 Months Since My Transplant

It's been a little over 6 months since my umbilical cord transplant and things are going really well.

Next week I will have my fifth chemo therapy into my Ommaya port. The first two were not fun, but I started premedicating which worked wonders. I just have some irritating side effects, which the doctors say will go away eventually (probably in seven months).

After my transplant, I received a gift from the Steven M. Perez Foundation (SMPFoundation.org). They wanted me to buy something special for myself. It took a while to decide, but I chose an Eliptical Machine. I've worked up to five minutes a day! I feel more energized and am able to accomplish small tasks. The fatigue is horrible but I am getting through it.

My hair is growing back and is now about an inch long! yay! I'll try to post a picture as soon as I figure out how. I'm new to this whole blogging thing. The MatchLindsey website was maintained by a good friend and her sister. It's about time I do things for myself! :)

I can't wait for the spring weather! I'll try to update as often as I can - but my life is pretty uneventful these days, so there's not much to write about (which is fine by me...)

Thank you for all your love, support and prayers!

January 2, 2007

Hi

We wish you a Healthy, happy New Year and hope all your holidays were joyful.

On December 12th 2006 Lindsey had chemo therapy into her head. This was the first of ten treatments, administered approximately once a month. She had a bad reaction and ended up back in the hospital for four days.

On December 21st 2006 she had a bone marrow test. Today at the hospital we received the results. The transplanted umbilical cord stem cells are 100% en grafted having replaced hers which is the first big step for healthy bone marrow production. Now the new cells have to coexist with the rest of her body.

She has been doing better each week. She has more energy, stays up longer and she does more each day.

So we really have a lot to be thankful for. So far so good!