Getting Radiated

Uh oh.  It's been 4 weeks since my last post and I said I wasn't going to that, didn't I?  (Actually 4 weeks minus one day, if you want to get technical about it.)  Oops.  Well, this time I won't promise not to go more than a couple weeks without blogging - I'll just say that I'll TRY not to go too long between posts.  Sound good?  OK, I feel better now that that's out of the way.

Since my last post I've had: two Herceptin treatments, one appointment with a neurosurgeon, two MRIs,  one radiation "plan check", and two actual radiation treatments.  Whew!  That is a lot to catch up on, so let's get started...

When we last left off (I know, it was so long ago you don't remember...), I was waiting to hear from Radiation Oncology about when the radiation to my spine would start.  It turns out that a few things needed to happen before treatment could begin.

First, I had to go see a neurosurgeon, Dr. Cohen.  My radiation oncologist Dr. Evans just wanted me to meet Dr. Cohen and have him evaluate me before starting treatment just in case I ever needed a neurosurgeon (which freaked me out only a little).  The appointment was very easy - I didn't even have to change into a gown (one of the few doctor's appointments I've had recently that didn't involve at least one boob flash).  Dr. Cohen just asked me to do simple stuff like touch my toes, walk on my heels, etc.  He asked if I've had any pain in my back or any numbness or tingling (I haven't).

After this quick exam I went into his office where he told me that from a neurological standpoint I was perfectly healthy.  He said he considered the two spots on my spine "benign" - which doesn't mean that they were not cancer, just that they do not currently pose a threat to my spinal cord.  So that was good to hear.  He said he didn't even feel the need to order an MRI, but that if Dr. Evans did, which he expected (and he turned out to be right about that), he would take a look.  But all in all, it was a very easy appointment and I was in and out of there pretty quickly.

The following week I got a call from Dr. Evans' office that radiation would start on Tuesday, Sept. 7th.  But first, I needed to have an MRI, just as Dr. Cohen predicted.  So on the Friday before Labor Day weekend, I went to the imaging place for the MRI to my spine.  Isn't that how everyone kicks off a holiday weekend - with a medical test?  Oh, it's just me? :)

After waiting AN HOUR (at least they warned me and at least I had a book!) they finally called me.  This MRI was just like the others.  I had to lie still while the magnets clanged above me, though I had earplugs as usual, and then halfway through they gave me an injection of contrast through an IV before I had the second set of "pictures" taken.  Ever since my 6-needle-stick day I've been a little nervous about getting IVs since I know my veins are shot and I only have one arm available.  But luckily the technician got it on the first try.  Whew!

So the following Tuesday I was all ready to start radiation, when Dr. Evans' office called me again to tell me my appointment would be changed to Thursday.  OK, no problem.  Tuesday was a busy day at work anyway and so I was glad to have the extra time.  Then, on Wednesday I got another call from Dr. Evans' office.  Turns out the MRI I had wasn't "refined" enough, so I had to have another one.  Dr. Evans even got on the phone himself to explain it to me and assure me that it wasn't because the MRI turned up something we didn't know about - it was just that they needed it to be super-refined because they wanted to have the clearest picture possible of the spots in relation to my spinal cord, so that they could be 100% sure to avoid it with the radiation.  Fine by me!  Dr. Evans said that the CT scan I'd had during my tattoo session showed the spots really well, but not the spinal cord and so that was why an MRI - and this "super-refined" MRI - was needed.

So on Thursday of that week, instead of going to radiation, I headed back to the imaging place for another MRI.  This time they sent me to a different MRI machine (must have been the "super-refined" one).  One tedious thing about the imaging place is that EVERY time I go (and trust me, I have been there LOTS) I have to fill out all the same forms again.  I guess it's necessary, since I have to sign things that say I agree to the contrast injection, etc.  There is also a form that I have to fill out which asks if I have a variety of foreign objects (mostly metal things) in my body.  I have to check that no, I don't have any shrapnel or bullets in me, and no, I do not have a penile implant, thank you very much.  However, I do have a tissue expander in my breast, which I noted, and under "recent tattoos" I hand-wrote "radiation tattoos".  Not sure if that counts but I figured better mention it.

Now, I filled out this very same form less than a week earlier when I had the first MRI, and no one said boo to me.  This time, they called me up to the desk to tell me I could not have an MRI with a tissue expander in.  Huh?  Of course I told them that they didn't seem to have a problem with it a week ago and they said it was OK.  Then, while I was waiting in my gown for the machine I could overhear the technicians talking about it, and then one of them came over to ask me a few questions about my expander.  He seemed very uncertain.  I told him who my plastic surgeon was and that I'd never been told NOT to have an MRI with an expander in.  I said I didn't have any problems last time, but he could call Dr. Samson if he wanted to double-check.  I'm not sure if he did or not but they went ahead and did the MRI anyway.

I know that there is a small amount of metal in the expander - where the "port" is that they do the injections through.  Since an MRI uses powerful magnets, that's what the hesitation was about.  So of course I was lying there imagining the expander moving around in my body or the magnets suddenly pulling me by my right breast up to stick to the machine!  But I felt nothing, just as I hadn't with the first one.  The technician kept asking me if I was OK - I think he was a little nervous - but I was fine.

The day after the second MRI, I had to go to Radiation Oncology so they could do a "plan check".  My first treatment was now scheduled for the following Monday, so they wanted to have me lie in the mold, check the alignment with my tattoos and go through the "plan" to make sure everything was in order.  It was kind of like a "dry run."

This appointment was at 7pm on Friday night - woohoo, way to kick off the weekend!  I had to change into a gown from the waist up and then go into the radiation room where the mold they had made during my tattoo session was lying on the table.  I had to ditch the gown and lie in the mold.  The radiation therapists then marked my tattoos with marker so they could see them easily, which tickled just as it did last time.

I honestly didn't understand a lot of what they were talking about most of the time, but I just let them do their job.  The machine would move around me and the table I was on would shift from time to time, and the therapists just kept checking my tattoos.  A couple times they made more markings on me.  When they did that I started to get nervous that I was going to need more tattoos, because these new markings were in the solar plexus area, which HURT the first time I had tattoos there.

But luckily, when they'd gone through the whole plan they put two stickers on these new markings and told me not to remove them.  I could shower and everything - they would stay on.  The radiation therapist said she wasn't sure they would even need them, but to leave them just in case.

On Monday afternoon, I headed back to Radiation Oncology for my first actual treatment.  I had to wait a while again, but I've learned to always bring a book or magazine to appointments because you never know how long you might need to wait.  While I was waiting, the head Radiation Therapist came over to talk to me and tell me what to expect.  She said I wouldn't see or feel anything while the radiation was happening, that the machine would move all around me (which I knew from the dry run), and that my job was just to lie there as still as possible.  She said that the session would be long - an hour to an hour and a half - and asked me if I would be comfortable in the same position for that long or if I needed a pain pill.  I was fine during the dry run, so I said I didn't think I needed anything.

The reason why this session would be so long is because it was the first time going through this plan.  So, first they would take "films" to make sure I was in the right position.  Then, they would do about half the treatment, take films again to make sure I was still in the right position, then finish the treatment and take films one last time.  This would only need to be done the first time going through the plan - which was a moot point because this plan only treated spot #1, which only needed one treatment anyway.

My next appointment, set for Wednesday, would also be long because it was the first time going through the second plan (to treat spot #2), but the three subsequent treatments planned for the second spot would be quicker because they wouldn't need to take films.

OK, back to the first treatment.  After they called me, I went into the radiation room and there were about 5 or 6 Radiation Therapists standing around there.  I knew a couple of them from my tattoo session and dry run, and the rest introduced themselves to me.  I got up on the table into my mold and once again, they marked my tattoos with marker so they would be easy to see.  They moved me around a little here and there to get me in position and once they were satisfied I was set, they put the gown over me so I wasn't lying there exposed, which was nice.  Then, they attached this metal horseshoe thing over my chest, which was attached to an arm on the side of the table.  I'm not exactly sure what that was about, but I think it was a device to measure any movement I made.

Over the next hour and a half, I had to lay in the same exact position - on my back with my arms over my head.  Most of the time, I was in the room by myself.  The machine would move around me, sometimes the table I was on would move, and from time to time I heard a clicking or buzzing sound.  I am not totally sure, but I think the clicking was films being taken and I think the buzzing was when the radiation was happening.  Every now and then, the therapists and Dr. Evans would come in to check stuff.  Me - I just laid there staring at the ceiling.  At least they had a nice mural painted on the ceiling of the sky and trees, because that's all I could really see for an hour and a half, except when one of the machines was directly over me.

About halfway through, my arms started to hurt from being in the same position.  I mentioned it to one of the therapists the next time they came in, and she sypathized and told me we were about halfway there.  I had no sense of time since I couldn't see a clock, but that was probably 45 minutes in.

The second half basically sucked. My arms just kept on hurting and it was very frustrating to not be able to move. I began to feel agitated, and I began to understand why the Radiation Therapist had offered me a pain pill. In addition, the whole time - even before my arms started hurting - I was paranoid about moving. I didn't want to mess anything up, especially since I was afraid if I moved I would risk radiation going to my spinal cord. I even wiggled my fingers and toes every now and then just to make sure I still could!

As the treatment went on, my mental state began to weaken... I just kept telling myself I had to get through it, just a little while longer. I kept wishing someone would come in and tell me we were done. I tried to think of things like the book I was reading or something going on at work to distract myself. In retrospect, it was a lot like getting near the end of a long run, when your legs hurt and you are tired and you just want to stop, but you have to keep telling yourself to keep going, just a little further. At least with a run you usually have a sense of 'how much longer' - with no clock and no control over the time I had no idea.

Just when I thought I was going to crack and couldn't keep still any longer - I was very close to starting to cry - they finally came in and told me I was done. WHEW! Dr. Evans said I did good and everything went well. It felt SO GOOD to move my arms down below my shoulders again.

After I changed back into my clothes to head back to the office - yes, I went back to work after this - Dr. Evans' nurse practitioner Jennifer stopped me and asked how I did on the table for so long. I told her that my arms started to hurt and it got rough near the end, but it was mind over matter. She gave me a prescription for Ativan - a mild tranquilizer - to relax me for next time. I was glad for it because I was pretty sure I was going to need it, especially since I had four more treatments to get through.

My next treatment was two days later. I'd had a Herceptin treatment in the morning, then headed to Radiation Oncology in the afternoon. When I arrived they told me I needed to have another blood test because one they had done that morning hadn't worked right. I was a little nervous because this was the same team that I'd had the 6-needle-stick day with, and I'd already been stuck once that day for my Herceptin, but luckily they got it on the first try this time.

While I was having my blood drawn, Dr. Evans came in to talk to me. Originally, the plan for treating spot #2 was to have four sessions, instead of just one like the first spot. However, he told me that he'd been going over my plan and had consulted with other doctors and that everyone agreed that because of my age and otherwise healthy state, that it would be better and more effective to treat the second spot with just one treatment. Hurrah! That meant I just had to get through ONE more treatment, instead of four. He said that was my reward for having to go through two MRIs and having the schedule change on me so much, haha.

This treatment went much like the one before, except this time I took my trusty Ativan first. It definitely helped as I felt much more relaxed this time. Once again I got into my mold, had the therapists get me in the right position, and then they placed that horseshoe thing over me again. The only difference is that this time for some reason they couldn't put the gown over me, so I had to lie there exposed (just from the waist up) the whole time. But it didn't really bother me too much - I've been used to the boob flashes for quite a while now.

The treatment started just as it had last time, with everyone leaving the room, the machine moving and the periodic clicking and buzzing noises. My arms did start to hurt again, but it didn't bother me as much as the first time - I'm assuming that was due to the Ativan. Then, nothing happened for awhile, which wasn't that unusual, but the therapists all came in and started checking different things on the machine. I soon gathered that something had happened with the machine and it had stopped working properly. At first, Dr. Evans said that I was in the perfect position so he wanted to keep me as is while they figured it out. Then, he told me that they had to bring a technician in and asked me if that was OK. I figured my current boob flash count was already well over the 60s so why not add another one! So I continued to lie on the table with my arms over my head while the technician came in.

After a little while longer, Dr. Evans said that they would probably have to reposition me again anyway, so I was allowed to move my arms and relax a little. Yay! They put my gown over me and one of the therapists also gave me a blanket to put over me since I was a little chilly. It was nice to have a break.

Shortly after that, Dr. Evans came in again and I think he was about to give me the choice of either waiting around until the machine got fixed or coming back another time. But he didn't even have a chance to get it all out when the machine suddenly came back to life! He asked me if I was OK to continue and I said sure, bring it on!  One of the therapists called me a trooper and Dr. Evans said he was sure I just wanted to get it over with at that point. 

So they got me back in position and finished up the treatment. And now I am officially done with radiation to my spine - WOOHOO! I will see Dr. Evans in two weeks for a follow-up, but other than that, my spine can officially consider itself radiated.

So what is next? Well, as I mentioned, since my last post I've also had two Herceptin treatments with Dr. Sara, where I learned that the plan for the rest of my treatment has changed a bit. But since my fingers are a little tired from all this typing (I know, I know, my own fault for waiting so long between posts!), and because this is meant to be a blog post and not a novel, I will explain the next step in this long journey of mine in my next post. Which I promise will be coming tomorrow. I think. Well, that's what I'm aiming for at least... :)