Donation

I just received an amazing gift from the Christopher Steele Foundation. One of our TYR athletes, Kevin Zakrzewski, is the co-founder and events director for the foundation. To make a long story short, they sent me some money to help with all the medical bills. I never thought something like this would happen to me and by no means was I financially prepared. It's been great to know what kind of people are out there to just reach out their hands to help. If you are interested in learning more or donating to the foundation, the website is:

http://www.christophersteelefoundation.org/

Thanks!!

Radiation appointment

So I met with my radiation Doctor today, Dr. Woodhouse. He has a great personality and we hit it off right away - always a good sign. Hopefully this will all make sense as I type it....we are estimating 3-4 weeks of radiation. I will go in everyday, M-F, for about 20-30 minutes. I will go to the Cancer center in Fountain Valley, which is about a 10 minute drive from my house.

Over the next few weeks, we are going to monitor my blood counts and get some preliminary testing done. I have a CT scan next week. They will compare this scan to my original PET scan (with all the tumors) and put them together to have a computerized image of where they will radiate. I will be radiated on both my neck and my center chest. I will also be getting a tattoo on my chest (and no it's not one that will wash off) to allow for accuracy in the radiation placement. He says it will be small, a blue dot, but still, I'm not happy with the idea of more body changes. The tattoo is because when I breathe, my chest naturally rises and falls. The tattoo will keep the reference point - I wonder if insurance will pay to get that off when I am done?!?

The side effects are small to large....small being, minor skin discoloration (will go away), sore throat, trouble swallowing and fatigue. The larger side effects being that I may be more prone to breast cancer (because I am getting radiated in that area), thyroid issues, difficulty breathing (lungs will be effected), possible heart issues (also getting part of my heart) and weight loss. Of course the larger side effects are things he has to say, but aren't 100% likely. He is going to keep an eye on my lungs, especially because I am already having issues. He is also going to keep an eye on my heart - which is under stress and showing some abnormalities. I am getting a low dose of radiation, about 1/2 the amount a normal person would get. I am getting that, because I have no cancer cells in my body right now. If my body still had active tumors, then a higher radiation dose would be necessary. So, because of that, I think the larger side effects are less likely.

Dr. Woodhouse also suggested not having radiation. He had a patient come in who was against having it. But he and I felt the same....the PET scan shows no cancer cells, but the cancer cells have to be large enough to show up on the scan, it doesn't mean there aren't any there. The radiation will just kill the rest of whatever else is left. Plus, if I didn't have radiation I would have a lot more stress and anxiety going into follow up scans wondering if the cancer is back. I want to finish and close this chapter in my life. If I do everything right, there is something like a 95 % remission rate where the cancer never returns. That's what I want.

Final Chemo is DONE!

So I went to my final chemo this morning, # 8. It went smooth, got home before noon - it goes faster when I have one less drug. I got home, felt good for a little bit but then it hit. It definitely comes in waves and a lot has to do with the temperature of the apartment. It got a little warmer and I almost lost it. I was over heating and feeling like garbage, mom got me cold cloths etc. Always helps to have a nurse sitting next to you! I didn't get too much food in me until about 6 pm tonight....so it was good that I finally got some calories in me. I will take something to help me sleep tonight, sleep always makes me feel better.

On Thursday, I am meeting with the radiation DR. So I will know more about my next step at that point. I have been told a lot of things about what may happen during radiation and the big one being my esophagus. It may get burned during the treatments and could have a really hard time swallowing - thus lose weight. So I won't get too alarmed until I talk to the DR and make sure I have all my facts straight.

The great thing is today was the last day of them accessing my port. It does bother me a lot. It will still have to stay in my chest until next summer or fall (2009)....so hopefully I don't scare too many people at the pool when I go swimming! I am sure it will cause a lot of stares and questions, but no more then I have had to deal with now.

I thought about taking a picture in the oncologists office, to capture my last moments, but then I thought about the other people sitting there. One lady was there my last treatment, it was her first treatment and she just broke down crying. It was a horrible thing to watch and brought back a lot of memories and feelings. Another man came in to the office to donate his drugs. He was stopping all treatment, nothing was killing all his cancer and he has been fighting for over 50 years. He wants to live the rest of his life without all the drugs in his system...it's just a waiting game for him now.
I will celebrate in my own way, but not at the expense of others who have their own challenges. Yes, we are all going through the same things and I know that I can be an example of it working, but that's not me either. I have never been a "look at me" kind of person and I especially didn't want it to come across at look how lucky I am and too bad for you. I will celebrate when I am truly done. I still have some hurdles to get over and have a long way to go to get back to where I want to be. Each day is a celebration in it's own way. I am surrounded by such great people, why is this day any different then tomorrow or yesterday, really?? I am still here, I am still breathing and I am still cancer free!

So, I am just trying to take it easy.....more to come on Thursday after my appointment.

Annoying!

There are some many side effects that come along with Chemotherapy, I couldn't possibly name all of them....but the most recent one is driving me CRAZY! My eye lashes are falling out. I have roughly 10 a day floating around my eyeball. Most of the time they are the really small ones you can't see so well....so I keep rubbing my eye to figure out what's bothering it and this little lash is what I find, ugh!

So yes, even though my body is clean, I am still having Chemo. With each Chemo cycle comes more side effects, fatigue, and more hair loss etc. I keep getting this question a lot - why are you still getting chemo if you are clear? Let's look at it this way, would you want to have to go through this again? I would rather go a little longer to MAKE SURE it's gone, rather then having to go back into treatment in 6 mo-1 year. It's one last final zap.

Other then the lashes, pretty much the same side effects as before - the hardest one to deal with is not being able to sleep. I know there are sleeping aids out there, but who wants to take a pill every night for that, especially with all the toxins already in my body. Truthfully, I sat around all day long reading an entire book and started another one. How can my body really be that tired from reading books? I can't take walks or exercise, I am sure that would help?? But I am still having trouble breathing, so when I am here by myself, it's not a good idea.....plus, I don't know what's going on. I don't want to push it if I am causing permanent damage. I have to wait a few more weeks to get into the lung doctor.

Don't take "normality" for granted!

Update

So not too much is new on the health front. I had blood taken today and will be going in for my final chemo treatment on Tuesday. Overall, my energy level is back up, feeling good - just trying to hold back doing too much so that I am strong going into the final treatment. I just scheduled my appointment with my Radiation Doctor, Dr. Woodhouse. We will be meeting on Thursday of next week. I really wanted to get in as soon as I could to come up with a game plan. I know I will have to wait a few weeks before radiation starts - to get my counts normal, but the Dr. will be able to tell me how many weeks of radiation I will be having. Plus, to be honest, I know very little about the process; side effects, what is it, how long each treatment takes, where I will go for each treatment. I know I will be going daily, but that's about all I know.

The weekend so far -

This weekend has been pretty slow. To be honest, I haven't been feeling well. I have been really weak, having trouble getting food in....the usually stuff. I know I have one more chemo treatment left, which I am so excited about, but I still have to take this disease one day at a time. I can't get ahead of myself dreaming about the vacations I will be on or what adventure I want to go on next. It will be baby steps to recovery. Seriously, I haven't left my apartment since my treatment on Tuesday, so forget running away on a camping trip...how about being able to take a walk every day.... or being able to take a shower standing up every day, that would be a great start (yes, you read that right, I have to sit in the tub and shower, because I get really light headed). To be honest, I think talking about those kinds of things are just discouraging me. Believe me it's not a matter of WANT, it's that I physically CAN'T, yet. I just start getting excited about the idea of being 'normal Erin' again and then practically faint trying to make my lunch. I get snapped right back into reality very quickly.

Every time I get excited about maybe doing things again, Brent reminds me that I will have to take it slow. Sometimes it's easier for him to see where I am really at. I know I am a strong person and will most likely hurt myself trying to throw myself back into things again....it's a good thing he's holding me back!

I know Cancer has changed me. It has changed how I look at life and what is important. I don't know why this happened to me and I won't kill myself trying to figure that out. I know it will come to me, in it's on time.

Treatment update.....

So we went to meet with Dr. Chen today and what I was hoping for what actually happened. Since I had my first treatment in cycle 4 yesterday, I assumed best case scenario would be one more chemo session....and that is what I was told. Tuesday, August 26th will mark my 8th and final chemo session. Mom was about to jump out of her chair. What Brent, Mom and I couldn't stop laughing about in the parking lot is we were back to the original information we thought we were given; 3-4 cycles, 6 - 8 treatments. Remember a few weeks back when I thought I misheard him and that I would really be going 6 - 8 cycles, 12-16 treatments....boy oh boy, it's so hard to keep everything straight sometimes! I also know that they weren't sure how well my body would react, so everything was up in the air.

So I will have my last chemo in less then two weeks. We will wait a few weeks to get my counts up and to make sure they level off there before beginning radiation. My radiation will be very localized to the left side of my neck and center chest. I will be meeting with my radiation doctor as soon as I can set up an appointment - need it approved by my insurance company first. All I know right now is that he/she will determine the longevity of the treatment and it will be either 4 or 5 weeks of daily radiation (M-F). I have roughly 3 more blood tests, so the poking is going to slow down by a lot - my veins are VERY happy with that news!

I will have a follow up PET scan at the completion of radiation and will have those every 3 months for the first year and then be spread them out a little more as time goes on. If it were to come back, which it will not, would be within the first year.

I am still scheduled to see a lung doctor in about a month, it's the earliest I was able to get an appointment. It will be good to talk to someone specifically about what is going on with my lungs. I am planning on trying to call the office in a few days to see if I can get in any sooner then a month.

Other then that, I can see the end. It will all be more final after I meet with the radiation doctor, but it looks like I will be able to get back to the east coast for sure for Christmas, YEAH!

Chemo # 7

I have to start off by saying Congratulations to Matt Grevers - the TYR athlete who won a an Olympic Silver in last nights 100 back. Amazing swim on his part, especially when this isn't even an event he was training for all year!

I went into my treatment this morning and my results were there....I just had to sit and wait over an hour for Dr. Chen to come into the office. I guess when you are a DR you can come in really late in the morning ;0 So it turns out that my heart is fine. We still don't know what's going on, but no major problems are showing up on my lung or heart tests. We went ahead and removed the lung drug, because that did show a decrease in my capacity. So, I was happy with the decision.

I am still waiting for my pre-approval to see a lung doctor, I just got one for a heart Doctor, but not sure why I needed that?? I can hopefully talk with the lung Doctor about what's going on and get some answers. I am going in to see Dr. Chen tomorrow to ask a LOT of questions about my plan from here. Mom will be joining Brent and I, which is a VERY good thing, because I am quite out of it the few days after each treatment...and I am not sure how good my questions would have been.

I am feeling alright today. Not completely in a fetal position or anything, been able to eat, so that's good. Just a little out of it and tired. I will let you know how tomorrow goes....

Chemo # 7 tomorrow??

I don't know much more then I did on Friday. I took my echo and my oncologist still doesn't have the results. They have been trying hard to get them released, but the hospital is being difficult. So I am going into my treatment tomorrow, just hoping they have the results...if not, no treatment. I don't want to get the chemo medication that is causing my breathing problem and won't know that until I have the results...

A lot has been going on in my family. My Mom has made it to California, permanently. She is starting as a professor at University of San Diego this fall and my brother Matt has gone back east to start his PhD at Columbia.

So much is going on in my family, it's sometimes hard to keep up. They are all very big things and things that will change our lives forever - teaching, school, and cancer. What has always amazed me is how a family is able to pull together in good times and in bad. I wouldn't change my family for anything!

Testing

So I was told to push back my chemo treatment. I went in to the hospital this morning for my cardio echo this morning instead. Once I get those results, I would have my next chemo treatment, number #7. We want to make sure we know what is going on and remove the right drug. We figured that having the test this morning that I would have the results Monday, so treatment will be on Tuesday.
I still have a follow up appointment with Dr. Chen on Wednesday to go over a plan. I will have to rework all my appointments to get my treatments back to Fridays and not sure if I need blood work on Wednesday if I had chemo on Wednesday? I will keep you updated as I learn about results etc.

Cancer Free??

Let me start at the beginning. As you know, I have been having trouble with my lungs. I started somewhat stalking Dr. Chen. I wanted to make sure we talked about what we were going to do in terms of my protocol on Friday - were we going to remove the drug causing the problem? So he called me today. We were able to talk a little about how I was feeling etc and we decided we would remove the drug (Bleomycin). Then he proceeded to tell me that he had my results from my PFT yesterday. He said that my test showed NO activity and that he saw no tumors. I was shocked. I asked him "are you sure, both my neck and chest are clear?" He said yes. I hung up the phone and just started making calls....Mom, Dad, Matt, Jon etc. They were like, are you sure the tumors are gone? Don't get your hopes up. I started to wonder if I heard what I wanted to hear and not what was said (Chemo brain). I was actually on the phone with Monica when another private call came in, which is usually my doctor. It was Dr. Chen again. He started thinking that maybe it wasn't my lungs, but maybe my heart. I am out of breath just laying here, not just walking around. Adriamycin is the drug that affects my heart, so he wants to make sure he removes the correct drug and can't do that until he knows for sure what is going on. So he ordered a stat cardio echo and wants that done before my next chemo treatment. So, hopefully I will have the echo tomorrow or I will move my chemo to next week. I then asked him to repeat what he said in the first call, asking '"so I really don't have any more tumors?" He said "I see no more cancer cells in your body on this PET". I just started laughing, out of shock, didn't know what else to do. He said he is also surprised with how well my body responded to treatment.


I am not 100% sure what the means in terms of treatment longevity, but regardless each treatment I have is a preventative to make sure it NEVER comes back. I no longer have to sit here wondering if I will be done by Thanksgiving/Christmas. I know it is gone! I will continue on with my next chemo. I am meeting with Dr. Chen on Wednesday of next week. I will ask him all my questions and hopefully come up with a plan of attack from here on out. I just can't decide if I want to sit here and laugh or cry? I am just so happy that this may be over soon and I am ready to move on with my life! I will keep you posted as I know more, just wanted to share the news :)

Lung update

I really wish I had some hard findings to report, but that's not the case. I don't know much more then I did when I left the hospital last Monday. My lung capacity has been depleted as a result of Bleomycin (a antitumor antibiotic). It is one of the 4 chemo drugs part of my protocal (ABVD). Meg Brown was telling me this was a drug that Lance Armstrong was told he could NOT be on if he ever wanted to race again. Not that I want to race again, but I liked the lung capacity I had. So, for right now I know my lungs were operating at a 140% - much higher them normal, but let's be honest I am a non-smoking swimmer, what would you expect?!? I am not at about 120%. Yes, higher then 100%, but my 100% is 140. Jennifer (Dr. Chen's assistant) had been bugging the hospital all last week for my results, they won't release them, yadda-yadda. When they finally faxed them over there was not an interpretation of them. So we have to wait until Monday or Tuesday. In the meantime, Dr. Chen put in a pre-approval for me to see a lung doctor. That really made me happy. I have a lot of questions going through my head - what are the long terms effects with staying on Bleomycin? I know there is a really high success rate of people who have my cancer and the ABVD protocol, so by taking me off that, what are the success rates? What are my options?

On Tuesday, I have my PET scan, another assessment to determine when I am. I am meeting with Dr. Chen on the 13th to go over those results.

Today, Bethany is flying in from VA. She will be here all week and will be around for my treatment on Friday. It will be great to see her - last time I saw her was at her wedding :)