How's Lindsey?

Onward and Upward

2008-09-10T10:42:00.002-04:00

I've taken the bar! All that studying and neglecting everyone and everything else in my life has paid off... for now. I got through the two day bar exam unscathed. I find out whether or not I passed in November. In the meantime, I was out of the city until this past week. Now that I'm back it's time to update that resume and look for a job. I've got my work cut out for me.

It feels good to finally accomplish what I was supposed to accomplish 3 years ago.

Raising the Bar

2008-05-25T17:39:00.002-04:00

So May is almost over. I've finished law school and this coming Friday is our Graduation ceremony. I've started the bar review course and was told that this is our last weekend that we'll have free time so we should enjoy it. Scary but good to finally be moving forward.

You'll know where to find me from now until the end of July. I'll be sitting in front of my computer with my books studying! I apologize in advance if I don't get back to you until August!

It's official...

2008-04-15T21:55:00.001-04:00

...my hair is now so long that I need to put on a head band to wash my face.

'nuff said.

These days...

2008-04-03T17:38:00.004-04:00

As you can see I've been too busy to update this blog and there's not much health stuff to report (thank G-d). I am still dealing with some side effects of who knows what (don't even get me started on what the doctors call hormone replacement therapy - that's a whole other update...) but i'm feeling good and my energy levels are higher than they've been in a while. I'm not 100% but i'm getting there!

I'm back at school this semester to finish up and graduate this May. I plan to sit for the NY bar July 29th and 30th. YAY This month I turn 28 (i made it!). I've been working with two fabulous cancer organizations: Leukemia & Lymphoma Society (LLS) and "i'm too young for this" (i2y). It's been keeping me on my toes!

I'm trying to keep my head above water and catch up with friends that I haven't seen. That's a job in itself! Speaking of job - NO, i haven't even started looking yet. One day at a time! After I take the bar I'll worry about employment (thank you mom and dad).

What I would like to do before I actually begin working is travel! Haven't figured out where and when yet either. =) I'll keep you updated...

A Must See!

2008-02-01T14:51:00.000-05:00

Learn a little about the group I have been working with and some statistics about Young Adults with Cancer in this short video.

http://promo.i2y.com

FUNDRAISER ALERT!!!!!

2008-01-30T22:27:00.000-05:00

Black Tie and Black Jack to benefit the Leukemia and Lymphoma Society

I already bought my ticket!

Saturday, March 15th 8PM - Midnight

BRIDGEWATERS
11 Fulton Street • New York , NY (at the South St. Seaport)

TICKET PACKAGES
Solitaire: $175/ticket & $15 in gaming chips

VIP: $250/ticket & $30 in gaming chips

VIP Royal Flush: $650: Includes 2 VIP tickets, $75 in gaming chips & 1/4 page ad in event program

A NIGHT NOT TO BE MISSED!
Guests will enjoy an open bar, dinner, dancing, raffles, a silent auction, games of chance, and a live auction featuring our guest emcee, Team In Training head coach, Ramon Bermo.

Test your luck and skill at roulette, black jack, craps and Texas Hold' Em Poker. Don't miss out on the chance to win items such as a Warren-Tricomi gift certificate, all-access passes to the Tribeca Film Festival, courtside New York Knicks seats & much more in our Silent Auction & Raffle Drawings!

FOR TICKET INFO
www.lls.org/nycblacktieblackjack
or call 800.838.3006

A Boring Update

2008-01-30T16:28:00.001-05:00

The chicken pox are gone and the next virus has moved in. I'm currently getting over a respiratory virus. No medicine - doc says I just need to get rest and drink plenty of fluids. It could be worse. Hopefully next week won't be =)

I'm in my third week of school and it's actually going better than I expected (event though I don't know any of the other students). I did eat lunch by myself on the first day - but now i go home for lunch =)

So that's all the exciting news for now.

Happy and Healthy 2008

2008-01-02T12:46:00.000-05:00

So I started my re-immunizations. I got 5 shots the first time. I could barely move my arms!! That was fun. and for Christmas - Santa gave me chicken pox! Yes, I had them as a child but my immune system hasn't had them yet! Luckily they were juvenile chicken pox and not the adult version (shingles). I hear those are pretty painful. They kept me in the hospital for a few days because children's chicken pox can do some damage to an adult body (I think something in the brain and may make you sterile! like that would be a problem...). I also learned that chicken pox is one of the 8 types of Herpes viruses that affect humans. On the bright, non-itchy side, I should have lifelong protective immunity from further episodes of chickenpox.

What a way to start the new year! I hope yours started better!

It Ain't Easy, but so far so good

2007-12-07T16:57:00.001-05:00

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

2007-11-02T17:40:00.000-04:00

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

2007-10-21T17:21:00.000-04:00

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

2007-09-11T20:47:00.000-04:00

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!

2007-08-15T14:35:00.000-04:00

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

The Stupid Comedy Show

2007-08-15T14:14:00.000-04:00

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

2007-08-15T11:07:00.000-04:00

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!!

2007-07-29T21:20:00.000-04:00

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

2007-07-29T21:11:00.000-04:00

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!!

2007-07-08T16:30:00.000-04:00

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

2007-07-08T16:25:00.000-04:00

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

2007-05-26T14:56:00.000-04:00

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...

2007-05-07T17:11:00.000-04:00

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!

2007-05-07T14:17:00.000-04:00

5 Treatments to Go

2007-04-26T11:30:00.000-04:00

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

2007-04-17T23:24:00.000-04:00

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

2007-04-09T18:46:00.000-04:00

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

2007-01-02T11:29:00.000-05:00

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!

November 28, 2006

2006-11-28T11:28:00.000-05:00

Hi everyone,

Lindsey is doing really well. The doctor has dropped her office visits to twice a week. All her numbers are going up everyday. She is slowing down on transfusions. Her platelets are over 100,000! Her red blood is just over the threshold for needing a transfusion. She is still dealing with the side effects from the medication.

Right now she does not need donations of Platelets and Blood.

If you would like to do something for Lindsey and all whom are inflicted with leukemia, we have set up a fund at Sloan Kettering that will go directly to the Leukemia Research Team. Please make checks payable to Memorial Sloan Kettering Cancer Center and in the memo section mark Lindsey Brass Fund and mail all gifts to:

Ms. Katie Kotkins
Memorial Sloan Kettering Cancer Center
633 Third Avenue, 28th Floor New York, NY 10017

Katie is also available to answer any questions you may have. Please feel free to contact her directly at (646) 227-2511 or Kotkinsk@mkscc.org.

Thank you for all your support and we hope you will join us in this effort to raise money for Leukemia research.

Thanks again,

Barbara, David and Lindsey

October 26, 2006

2006-10-26T11:27:00.000-04:00

Dear Friends,

We are finally going home after 7 weeks in isolation, though Lindsey will go back and forth to the hospital every other day for outpatient testing, medicines and transfusions. Please continue your donations of blood and platelets as her treatment/recovery period will be ongoing for the next six months to a year.

As you know, Lindsey has been battling Leukemia since April of 2005. Today, after overcoming innumerable challenges, hospitalizations, and a stem cell transplant, we as a family are asking you to help us give back to Memorial Sloan-Kettering Cancer Center (MSKCC) in Lindsey’s honor.

You have all played a huge role in our fight to date by so generously donating blood and platelets, supporting our search for a stem cell donor, as well as your expressions of concern and encouragement. Thank you!

Our Doctors at MSKCC are currently working on numerous investigational approaches, by means of clinical trials, to improve the treatment of AML. For example, they are working to refine combination chemotherapy, investigate new transplantation approaches, and identify what causes Leukemic cells to multiply.

We would like to raise funds in honor of Lindsey and her amazing attitude as she bravely fights this terrible disease. All gifts will be directed to the ongoing research conducted by the team of doctors who have treated Lindsey.

Please mail all gifts to:
Katie Kotkins
Memorial Sloan-Kettering Cancer Center
633 3rd Avenue, 28th Floor
New York, NY 10017

Katie is also available to answer any questions you may have. Please feel free to contact her directly at (646) 227-2511 or kotkinsk@mkscc.org.

We hope that you will join us in this effort and thank you again for all of your support during this challenging time.

Warmest wishes,
The Brass Family

October 12, 2006

2006-10-12T11:28:00.000-04:00

Hi everyone,

Finally some good news to report. Today we got the results of last Thursday's Bone Marrow test. They have successfully grafted the umbilical cord blood to her bone marrow. Her white blood count is 1,700. 7,000 is normal. She is on her way to recovery!

Last Saturday her triple port in her chest split and blood was spurting out, quite frightening. They clamped it shut and accessed her single port in her chest. This meant the only I.V. medicine, anti rejection drug, was going into her mediport, whereas she had three lines going simultaneously with other helpful drugs. As it was Saturday, they called in a surgeon to remove the broken triple port and place a new one on her other side. They were worried as her white blood counts were low for operating. But we didn't have a choice. She was stable after the procedure and on Tuesday her counts miraculously moved up to 1000! Still feeling very ill and hurting from this procedure, we thought she was probably going to have to stay another month, very depressing. Then Wednesday came and we had all this good news.

Now that her white blood cells are coming up , her body will start to repair itself. She has not eaten and has been sleeping most of the time. They will not release her until she eats and can move around better. So we have some more recovery time to spend here.

When she is released, she has to come back to the hospital frequently for her transfusions and I.V. medicines. So please continue to give blood and platelets. We couldn't have done this without you!

Thank you for your continued prayers.

Fondly,

Lindsey, Barbara & David

September 10, 2006

2006-09-10T11:26:00.000-04:00

Lindsey is back in the hospital, and needs blood and platelets immediately. If you live in the New York City area, you can make a directed donation for Lindsey, regardless of your blood type.

If you donate whole blood, Lindsey will get your red blood cells, and your plasma will be given to someone who matches your blood type. You can donate whole blood every 56 days.

Because platelets are not type-specific, Lindsey will get your platelets no matter your blood type. You can donate platelets twice within a 7-day period if there is at least 72 hours between donations. You may donate up to 24 times a year.

Nothing will be wasted; anything Lindsey doesn't use will be given to another patient in need. Donations must be made at Sloan Kettering Cancer Center in Manhattan. To make an appointment, please call Mary Thomas at 212-639-3335. When you leave a message for Mary speak clearly and make sure you say you are calling to donate for Lindsey Brass. For more information visit the Support section.

thank you so much for meeting this critical need,
The Brasses

September 8, 2006

2006-09-08T11:27:00.000-04:00

Hi Everyone,

We are back in the hospital since Wednesday for a transplant. Unfortunately, the doctors said we won't find an unrelated donor because of my genetic coding. There were too many mismatches.

Luckily, we found a good match in the umbilical cord bank. We are part of the double cord blood transplant trial. The doctor that wrote the protocol is now with Sloan and is head of the department. We started Chemo on Thursday which will finish Saturday, then four days of radiation. My transplant will be on Thursday.

We are in isolation, we have to be very cautious, so we are not having visitors.

We want to thank everyone for helping with and singing up for the donor drive.

We want to thank you all for your kindness, caring and support.

The Brasses

August 16, 2006

2006-08-16T11:24:00.000-04:00

Thank to everyone for making our Long Island Bone Marrow drive an incredible success - with only 5 days to plan, promote, and prepare, 288 donors registered in 4 hours! The test kits are winging their way back to the Gift of Life Bone Marrow Foundation where they will be processed and entered into the database to be matched against Lindsey and the hundreds of others who are searching for a donor. Special thanks to Congregation Beth Torah, Newsday, and all of the volunteers who worked so efficiently and professionally!

The Bar Night after the drive was a huge success as well, raising over $6,000 for the Gift of Life Foundation, earmarked for testing on Lindsey's behalf.

Many, many thanks to everyone for your help and support,
The Brass Family

July 28, 2006

2006-07-28T11:22:00.000-04:00

So my Doc says that barring anything crazy happening - I'm going home tomorrow! He wants to take me off antibiotics today and make sure my blood counts are OK tomorrow. I probably won't get out of here until after 5pm - it always takes a while - but I'll take it!

I'll have to come in Tuesday for a check up and as soon as my platelets are up high enough I'll be scheduled for an OMAYA implant, which is like the port in my chest but it will be on the top of my head. Gross - I know, but my hair will grow over it and it should be small enough where you won't see it (which is good since they don't take it out...ever). Once the port heals, I'll be getting chemo to the brain to treat the leukemia in the spinal fluid. They do it to the brain because that's where the spinal fluid is made. My Doc said the chemo will be done as an outpatient - but I'm not sure how often. Anyway, point is - I'M GOIN' HOME!

July 21, 2006

2006-07-21T11:23:00.000-04:00

So my doc just left and said that he hasn't seen a good enough match yet, but he hasn't seen all the 9 - maybe only 4 or 5. So i'm gonna try to step up the fundraising... he said we might just be counting on the drive... but i also know that the gift of life is doing drives all over the place so I feel a little better. I can't tell you how much it means to me that everyone got on this so fast. the doctors don't like to waste time. At this point we really don't know how long I can stay in remission (if at all). The other good news is he likes to do about 4 weeks of building up strength before the transplant. AND I will have a break between this chemo and when they go back to the spinal fluid. mixed emotions right now.

July 18, 2006

2006-07-18T11:23:00.000-04:00

There's no new update, but I'm feeling OK. Miserable with these side effects and don't feel much like chatting or being in a good mood. I'm saving all my strength. I'm walking so much better and it's getting better every day. We're playing the waiting game - not sure when we're leaving or what the very next step will be.

What we do know is that I will be having a stem cell transplant in the future... but we're looking for a match. My wonderful friend (some of you know her) Becca and her sister and husband have set up a website for me. www.matchlindsey.org

This website is to help with the Bone Marrow Drive that my fabulous friend Becca is coordinating with Gift of Life.

So if you check out the website you will see what is in the making. For the most part each link on the left has a small paragraph except the "donor education" which is long but interesting. My friends will be posting future updates there as well. If you have questions about the transplant and matches - please don't ask me. It's difficult to say over and over and it makes me anxious. There are great links on the website!

If anyone is interested in helping with fundraising, marketing ideas, with the actual drive (which looks like it will be Wednesday August 30 and Thursday August 31), or if you have any ideas or suggestions, email volunteer@matchlindsey.org

Anyway, I'll let you get to it. Thanks for all the emails and blood products and the friends with the blood products. The website will be updated when I have something to new to share!

Thanks for your support =)

Lindsey

July 2, 2006

2006-07-02T11:24:00.000-04:00

I'm sorry for being so distant but I have not been feeling well at all. I finished radiation to my brain, but they stopped the spinal tap treatments because they found the leukemia in my bone marrow again, which they need to treat immediately. I have been on such a high dose of steroids for the radiation that I can barely walk. I have a hard time moving anything from my abdomen down. It's so exhausting I can barely talk.

So I talked them into letting me out Friday afternoon for a very short weekend. We are returning on Monday to begin intense chemotherapy like I had last year. I'll probably be in for a month or so. The idea is to get me into remission again so I can have a stem cell transplant (which is the same as a bone marrow transplant) as soon as we find a match. They have started a search in the general database and my first cousins have been tested (but I won't know for another 2 weeks if they are a match).

I appreciate all the phone calls and emails and will let you know when I am up for visitors. I'm still not sure what to expect, but trying to keep my sense of humor =)

Lindsey

June 15, 2006

2006-06-15T11:21:00.000-04:00

Dear Family and Friends:

Well, I thought I was done writing these updates, but it's not over yet. I am back in the hospital this week. I hadn't been feeling well and I knew something was wrong. I was having muscle aches that kept me up all night and got worse and I also became increasingly off balanced which prompted me to go to urgent care at the hospital. I was pretty much walking like a drunk!

I've been in the hospital all week and have officially relapsed. It's leukemia again, but this time they found it in my spinal fluid (I had a spinal tap on tuesday) and the fluid around my brain (spinal fluid is made in the brain and travels down around the spine). This means I will need radiation to my brain to eradicate any leukemia in the brain tissue and chemotherapy to the area in the brain where the fluid is made and down the spine. I've already started chemo and radiation as an in-patient and luckily will be able to continue as an out-patient next week.

I have three tattoos on my head to make sure I get radiated in the correct areas (and of course one of the dots is in between my eyebrows! - but looks like a freckle and could be covered with make up if necessary). After radiation I will be getting a port on the top of my head in order to put chemo directly into the reservoir where the spinal fluid is created.

After this is taken care of, I will receive one dose of chemo like I was getting the first time around (the doctor hasn't decided what kind or when - it all depends on how this treatment goes) and then a few months after that I will be getting a stem cell transplant (which is the same as a bone marrow transplant, but the language used is stem cell). They recommend getting first cousins tested only. If family is going to be a match, it will most likely be a first cousin. We are also searching the national data-base of donors. Someone from the hospital should be coming to talk to us about this soon.

On the brighter side, my spinal fluid is clear, there are no masses - which means we caught this early. This treatment shouldn't take as long as my last leukemia treatment either. The worst side effect of radiation they said was fatigue - puh! been there, done that. And my blood counts are normal and they don't foresee needing any transfusions during this treatment.

So I have a long bunch of months ahead and I'll be putting off my law career AGAIN. That's the update for now and I'll be keeping you all in the loop.

Lindsey