Light the Night Walk - Saturday, October 2nd

Hi!

I don't really have a detailed update for this week in terms of my treatment. I'm still on a Monday, Wednesday, Friday schedule at Stanford with my next bone marrow biopsy scheduled for next Monday 10/4. Anyway, I wanted to include some details about the Light the Night walk coming up this Saturday for those of you interested in attending...

As you all know, my friend Abby has put together a team on my behalf called "Erika's Angel's." I think there's approximately 15-20 people on the team right now that will be walking, plus I've heard some others say they have signed up on their own so it looks like we will have a great turnout! The walk is this Saturday, Oct 2nd, at the El Camino Ballpark in Palo Alto. The El Camino Ballpark is located directly across from Stanford Shopping Center on El Camino Blvd. The event starts at 5pm, however the walk usually doesn't commence until around 6:30-7:00pm (they have to wait until it gets dark so the balloons light up). They usually have refreshments, music, registration, and some other things going on between 5-6:30pm. I have confirmed that this year they will also be having a bone marrow drive there on location from 4:30-6:30pm. This will allow people who are interested on getting tested to be a potential bone marrow donor (register into the bone marrow registry) a chance to get tested. The testing is free and is being administered by Stanford Blood Center. As for the walk, you can simply just come out and join us, no prior registration is needed (it's a $25 donation to walk with a lighted balloon). The walk is approximately 2 miles and from what I remember from last year, it was basically around the Stanford Shopping Center (very casual and leisurely pace) so there's no excuse about not being fit enough! I can't imagine that Chris and I would not make it to the event, however I'm not sure if I'll be able to participate in the walk as my body is not in that type of condition yet.

If you guys have any questions about the walk, please feel free to either reply to this post, email me, or you can click on the Light the Night link on the right hand side of this blog under "archives." Also, the following links are for the bone marrow registry website which gives information about the bone marrow registry and becoming a potential donor and Stanford's Blood Center site which gives the criteria needed to be eligible for bone marrow donation:

http://www.marrow.org/DONOR/donor_information_idx.html

http://bloodcenter.stanford.edu/donate/marrow.html

If you are planning to attend make sure to let me know so we can agree on a meeting place or I can keep an eye out for you. We had a great turnout last year and had so much fun, I think everyone that did it last year is returning once again this year! Hope to see some of you there!!

Erika's Treatment Update -- Week 14

Hi everyone!

Hope you all had a nice cooler week, it's been easier for me to stay out of the sun and trouble with the change in weather! In fact, those of you who saw me out at Midway Madness on Saturday noticed my ski jacket came back out for the season already.

Well I got the results of my skin biopsy this morning and it turns out that I don't have Graft vs Host disease, they believe it was just a drug reaction like originally thought. I still have the rash all over my body, although it has definitely improved with all the steroids I've been on. Since the biopsy came back negative I get to start tapering my steroids and one of my immunosupressant drugs today, yupee! My counts still remain stable, haven't needed a tranfussion in quite a while and the fevers kind of go and come as the days go by. My blood pressure is on the rise (which is typical when on cyclosporine), but not high enough yet to put me on medication for it. My next bone marrow biopsy will most likely be scheduled for next week which I'm not too excited about, but I'm keeping my fingers crossed that my attending doctor will be able to do the procedure again for me.

Other than that, nothing too exciting has been going on. My friend from Japan has been visiting me all week so I have been very excited to have company and I will be so sad when she leaves this Friday. As I'm sure all of you know the Light the Night walk is coming up on Oct 2nd (I have my Erika's Angel's team) and I'm hoping to be able to attend, however I'll just have to take it one day at a time and see. I'm keeping my fingers crossed though since I know most of you wil be there!!

Also thought I would mention that I've ordered a couple more of the Livestrong wristbands and might have a few extras for anyone interested. They're virtually impossible to get these days so please let me know ASAP!

Until next week...

Erika's Treatment Update -- Week 13

Hi again!

I've been receiving a lot of anxious emails regarding my biopsy results and how I've been since it's been over a week since I've last done an update. I apologize, there hasn't been much going on and my results did not come back as soon as they had expected. Here's the latest news...

I've been feeling relatively good, this weekend I actually was able to get out a little bit which was very nice for a change. Unfortunately, Sunday I spent a little too much time in the sun so when I went in for my visit on Monday I got the scolding of my life by my doctor. I guess my face was slightly sunburned and he noticed immediately and was very disappointed in me since I'm to stay AWAY from the sun at all times. Being exposed to the sun can cause Graft vs Host Disease of the skin, which is not something they want me to be dealing with at this point. It also caused my fevers to return (although not as high) so he wasn't very pleased about that. I've had a rash on my skin now for over 2 weeks which they thought was an allergic reaction to some antibiotics that I was on, however after Sunday's sun adventure they're concerned that it's now Graft vs Host Disease and so they're taking some precautionary measures. Today I had to have a skin biopsy done and I will have to start taking my favorite drug of all time - prednisone. Bloating and water retention here I come. The biopsy itself was not painful after they inserted some local anesthesia, however I could see the whole procedure and feel when they were stitching me up and that was not very pleasant at all. Other than that, my counts are remaining stable, still needing tons of magnesium every other day and having to maintain a high sodium diet.

Okay so I guess I've dragged on enough...I do know my chimerism results from the bone marrow biopsy. I have 95% donor cells (as of Day 28)! My doctor was very happy, he expected 30% and nothing higher than 60%. He said with my protocol they usually don't see that amount of donor cells present until Day 100+. I will have another biopsy done in about two weeks again to see how things are progressing and then we just wait and pray that the donor cells recognize my lymphoma as being bad and getting rid of it.

So that is it for this week, thank you to all who have been visiting and dropping off food, you can't imagine how much Chris and I appreciate it!!

Erika's Treatment Update -- Week 12

Hi!

I hope you're all managing to stay cool this holiday weekend, it's boiling out there! The nice thing about spending half of my days at Stanford is I'm in a nice air conditioned unit the entire time :P

Thankfully this week has been pretty uneventful. I did have to go back into the hospital Tuesday at 2am, however I was released around 8am so it wasn't a huge deal. I'm still having daily fevers, but they're letting me take Tylenol and keep an eye on them on my own rather than having me stay in the hospital. I can't wait for the fevers to finally stop, they're physically draining and wearing me out. My sodium has finally come up to a normal level, however I have to remain on a high sodium diet, which is causing a lot of uncomfortable bloating and weight gain. The good news is that in 10 days I'll be able to introduce dairy to my diet again, hurray! I'm dying to have cheese!!! My counts continue to do well, I did receive a unit of blood yesterday, but that is expected. I've actually been getting a day off here and there since things are starting to stabilize (can't have more than a day off though cause my magnesium drops too much).

I had my big bone marrow biopsy on Friday. As usual I was anxious the entire week before and had trouble sleeping the night before. I begged and even wrote my attending BMT doctor a poem in hopes that he would do the procedure for me (he's VERY good) and he agreed. It was actually the best experience I've had and the first time I didn't cry, cuss, or scream bloody murder throughout the whole procedure. I should be getting some preliminary results next week. According to my doctor the goal is to have at least 30% donor cells in my marrow at this stage, however I'm hoping for a much higher number than that (more like 90%).

Well I'll probably write my next update when I get the results of my biopsy, that will be a big determining factor on how my body is accepting the donor cells. Hope you're all having a great 3-day weekend!