When last we left off, I had just had my radiation planning session and was waiting to be called for radiation to start. Turns out, that took a lot longer than expected - 4 weeks to be exact! When I finally went in to start radiation, Dr. Evans said that my planning was a little "complicated" because of the radiation I had already had to my spine, which caused a delay. I guess they had one plan set and then revised it. Well, I guess I'd rather have it right than rushed!
I started by going in after work the day before treatment would start, so they could take some scans. This was pretty quick and I was in and out in about 30 minutes. However, they weren't able to get all the scans they needed because one of the machines was being a little wonky, so they told me they'd get the rest of the scans the next morning when I came in for my first treatment.
My first actual treatment day was Tuesday, May 17th. I went in for the first of my daily appointments at 8:45am (originally they wanted to schedule me for a daily 7:15am appointment - eeks! Luckily that idea was squashed because there was no way I'd be able to wake up in the 5's every day and then make it through a whole day of work without turning into a zombie).
I knew it would be a little bit of a longer appointment because of the scans they couldn't get the day before, but I figured that the first set of scans were pretty quick and I knew treatment itself wouldn't take long, so I didn't think it would take long enough to start bothering me.
Um, I was very wrong on that account. I ended up having to be on the table - in the same position with my right arm over my head and strict instructions not to move - for about an hour and 15 minutes. I didn't really have any sense of time since there was not a clock in my sightline but I can say that at least midway through it started to get pretty torturous.
It doesn't sound like it would be so bad - after all, you are lying down the whole time. But you try lying down with your arm over your head and see how long you can stay in the same exact position without moving before your arm falls asleep, then becomes really sore, and then you start thinking that you are never going to be allowed to move again - ever. Basically, it sucks. I'm not ashamed to admit that there may have been a couple tears by the end of it.
The radiation techs kept apologizing and saying they they knew I'd been there for a long time, that the first day is always the longest and it wouldn't be like this every day, and they kept me informed on how things were going. After they took my scans, the doctor had to review them. After he reviewed my scans, there was one thing he wanted Physics to double-check, so we had to wait for them to review my scans. Once that happened, THEN I had to be treated. So all of this took a lot longer then I think anyone expected.
Once the radiation techs get you into position, they don't want you to move because if you do then they have to reposition you. So while I don't blame anyone for the unpleasantness, I do think it would have been the lesser of two evils (for me at least) if they'd allowed me to relax (and move!) while we were waiting for the doctor and physics to review my scans, and then reposition me before treatment. But that is just my two cents.
I had flashbacks to my first spine radiation treatment, which was also over an hour and pretty unpleasant after awhile. After that treatment, the nurse practitioner gave me a prescription for Ativan (kind of like a Xanax) to relax me before treatment, which helped a LOT for my second spine radiation treatment. If I had known how long the scans + treatment would have taken, I'd have taken one! Of course, hindsight is always 20/20. And going to work afterwards would have been pretty interesting.
Luckily the techs were right when they kept telling me that the first day would be the longest, and it wouldn't always be like that. My treatments are now much more routine. I arrive at 8:45am (or usually a little early - very surprising for a non-morning person like myself). I say hello to the nurses who check me in, then I head to one of the changing rooms to put on a gown (luckily I only have to change from the waist up). Then I wait to be called - usually I don't have to wait long, which is good. I head into the radiation room and climb up on to the table, and lay back into the mold they made during my planning session in April. The techs take a few minutes to get me into position, and then treatment starts. Once it starts it takes only about 10 minutes or so. The machines move around me and when the radiation is actually flowing (I'm not sure if radiation really "flows" but I don't know how else to describe it) a light goes on and there is a buzzing sound, usually for no more than 10 seconds or so. Once I'm done I head back to the changing rooms, change out of my gown and then I am on my way to work!
On my first day the nurses talked to me about what to expect. Of course, I was already well aware of the side effects since my Mom just completed radiation treatment. The main side effects are fatigue, which the nurse told me usually starts after the second week, and skin irritation (redness, etc.). She told me to buy some Aquaphor and put it on the area being treated at least once a day to keep it moist. I am only allowed to use Dove unscented soap on the area, and I'm not supposed to apply any other lotions or creams except for the Aquaphor, since they can irritate the area.
When my Mom was in treatment, her nurses were very adamant that she could only use Tom's of Maine deoderant since it did not contain aluminum, like most traditional deoderants do. The nurse didn't tell me this, so I asked - she said that a study just came out saying this might not be really necessary but just to be safe it's probably a good idea just to go with the Tom's on that side. I've been following this advice. Let's just say that I will be glad when I can switch back to my regular deoderant and if you happen to be hanging out with me on a hot day you may want to stay on my left side (I am sticking to my Lady Speed Stick on my non-treated side!). :)
I've been following all the advice - dutifully applying my Aquaphor (which is kind of like Vaseline) every night and washing with Dove unscented soap every morning before treatment. So far, I have no side effects to speak of.
I do have to wake up 45 minutes earlier than I usually do every day for treatment, and yes, as expected I do get tired earlier at night. But I think this is more due to my earlier wake-up time, and not really from treatment itself - I guess it would be hard to tell!
I see Dr. Evans every Monday, and so far he said I'm doing very well and things all look good. Every so often the techs take scans just to make sure everything is still lining up, and luckily those have not taken too long and everything has turned out just as they expected.
I will have a total of 28 treatments - about 6 weeks (I don't go on weekends or holidays like Memorial Day). Tomorrow (Monday) marks my 14th treatment and therefore my halfway point. As long as everything goes according to plan, my last treatment will be on June 24th. Of course, if I can't be treated for one reason or another (most likely because the machine could go down - which happened to both my parents twice when they were going through radiation), then that could be extended a couple days.
I am still getting my Herceptin treatments every three weeks, and I had a MUGA scan a couple weeks ago just to make sure my heart is still looking good. I passed with flying colors!
In other news, back on April 29th, I attended the Helping Hand Fund Comedy Night charity fundraiser as the "Guest of Honor" in my hometown. I've mentioned the Helping Hand Fund before - it it an organization that provides wigs to cancer patients who either do not have insurance or whose insurance does not cover wigs for hair loss. It was started by Victor Migliarese, a friend of my Dad's who also gave me an "emergency" haircut when my hair started rapidly falling out last year due to my chemo treatments, and my regular stylist was out of town.
The night was a great success with a sellout crowd of over 300 people attending. My family had a big table right in the front, since we had a total of 27 people in our group! I was so touched to see so many people come out to support me and see me speak. Yes, you heard that right - Victor gave me the option of speaking - only if I wanted to - and since I don't usually get TOO nervous about public speaking, I agreed.
Of course, I didn't know there were 300 people in the audience until just before I arrived, but it was fine. I just said a few words about how important all the support I've recieved since my diagnosis has been to me, and what a great organization the Helping Hand Fund is.
Here's a picture of me with the program:
After my "speech" it was on to the fun stuff - a nice Italian dinner and then three (hilarious) comedy acts. Several people - many of them survivors themselves - came up to me to say hello and introduce themselves, which was really great.
All in all it was a wonderful night for a great cause!
And finally, my sister and several of her friends did the Race for the Cure yesterday in Washington, DC, as part of the Emily's Entourage+ team. The "+" is for my Mom and everyone else who has also had to battle this disease.
Here's a picture of my niece Claire at the race (she learned to walk just in time!):
Check out what her T-shirt says (in case it's too small to read, it says "Find a Cure Before I Grow Boobs") - too cute!