Sunday, August 22, 2010

The Girl With Seven Tattoos

Now that surgery is behind me (whew!) it's time to turn our attention to the next step in my treatment - radiation.

A couple weeks ago I added yet another doctor to my repertoire when I met my radiation oncologist - Dr. Evans - for the first time.

After doing a physical exam, Dr. Evans sat down to talk to my parents and me.  He said he was already very familiar with my case, as he was present at the "tumor board" meeting where Dr. Sara had presented my situation after the two spots on my spine were discovered.  He told me that in the meeting Dr. Sara said that I was young, strong and motivated, and that he felt very strongly that these two spots to the spine should receive treatment, despite the fact that typically, a case like mine would not call for treatment to the bone.

The thing is, even though my bone scan came back negative, meaning it did not show evidence of active cancer cells, these tests are not foolproof and it doesn't mean that there are not still microscopic cells remaining even after the chemo.  Just as my PET scan before surgery did not detect any active cancer in my liver, but the pathology report following surgery did find microscopic cells, the same could very well be true with these two spots on my spine.  So we are not taking any chances and are going to blast those suckers with radiation to try to kill any cells that may possibly have survived chemo.

Of course, I will also need radiation to the breast, for the same reason.  I have always known I would need radiation, because radiation treatment is indicated in cases where the tumor is larger than 5 cm, which mine was.  And especially since my post-surgery pathology report found a fair amount of cancer still remaining along with positive lymph nodes, well it is all the more reason to blast the area with radiation too in order to kill any pesky cells that may have remained.

However, Dr. Evans said that the priority is to treat the spine first.  Unlike the breast radiation, in which I will have to go for treatment for about a half hour every day for 6-7 weeks, the radiation to the spine will take place in a total of 2-5 sessions, each of which will be about an hour or so in length.

The first spot will likely be treated in just one session, since it is not located near the spinal cord and therefore is safe to blast all at once.  However, the second spot is located much closer to the spinal cord, and so to be safe, treatment of this spot will probably take place in 2-4 sessions.

As far as side effects are concerned, Dr. Evans said that I will not feel anything during treatment - it is like getting an x-ray.  However, I may feel some fatigue as treatment goes on, and I may notice some scratchiness in my throat or lungs for a day or two after treatment.  Since one of the spots is located close to my spinal cord, there is also a very low risk (Dr. Evan said less than 1%) of paralysis.  But I am not really worried about this because the risk is so low.

I asked Dr. Evans what the "measurement of success" will be, i.e. how will we know if the radiation worked.  He said that I will have a PET scan following treatment, but because of the radiation itself can skew test results, we have to wait at least 3 months after treatment is complete before we can get an accurate reading.  Since my last PET scan did not show "active" cells, but rather two areas that appeared to have already been treated, between you and me I think we will know if the treatment worked when the cancer either doesn't come back or it does.

The first step in the treatment is to have a "treatment planning CT scan," which was scheduled for the day after my appointment with Dr. Evans.

So, the next day I went back up to the hospital for the planning session.  The first order of business was to give me an IV since I would need contrast for the CT scan.  This was easier said than done.  Since I was having a scan, I was told not to eat for 4 hours before the appointment, so I don't know if I was a little dehydrated or what, but it has never been so hard for the nurses to get a vein.  Granted, chemo is hard on the veins and I only have one arm available.  Since I had lymph nodes removed during my surgery, I have a risk of developing lymphedema in my right arm, which is a condition that causes swelling of the arm due to improper fluid drainage or something like that.  Although it's not a life-threatening condition, there is no cure.  So once you get it, you have it forever.  I guess infections can help cause the condition, so in order to reduce my risk, I am not supposed to have any neede sticks or blood pressure cuffs on my right arm.  In fact, when I was in the hospital for my surgeries, I wore a pink "limb alert" wristband on that arm to notify the nurses and aides to avoid it.

So anyway, the first nurse to try thought she got a vein, but it "blew".  I had never heard this term before but apparently it's just a general term for when you don't get a vein, i.e. no blood comes out and nothing can go in.  So, she asked another nurse to try.  He tried and the one he tried "blew" too.  So they brought in the big guns, the nurse practitioner who is in charge of the nursing staff at Radiation Oncology.  He was pretty confident and went for the same vein they used for my last surgery (in the crook of my elbow), but wouldn't you know it, that one blew too.

Now, I am pretty easygoing when it comes to needle sticks, and believe me, after everything I've been through, I'm pretty used to them.  But even I was starting to get a little uneasy at all the failed attempts.  After the third try, the nurses said they had to go talk to Dr. Evans about it.  Perhaps the contrast wasn't totally necessary, or if it was, maybe they would have me come back in a few days once my veins recovered.

But, Dr. Evans said that since the spots on my spine were so small, he needed all the help he could get to see them, so the contrast was unfortunately necessary.  He apologized that the nursing staff had to "torture" me, but it was really important that they find a way to get the contrast in there.

So, a fourth nurse came by to give it a try.  She had kind of been hovering and at one point she put the rubber tubing around my RIGHT arm (the one that is not supposed to be used) and said "I'm not going to do anything, I'm just going to look".  I wasn't really sure what she was doing but since she was adamant that she was "just looking" I figured maybe she knew about the "no right arm" thing and was just looking to see where the veins on my right arm were to find a corresponding one on my left or something?  But I was a little uneasy because I figured if I wasn't supposed to have blood pressure cuffs on that arm, then surely rubber tubing wasn't allowed either, right?

She pointed to a big juicy vein in my hand (of course they are all juicy on the "bad" arm) and said if it were her, that's where she would go.  At which point I told her the right arm could not be used because of the surgery, and she said "oh" and took the rubber tubing off.  Of course now I was watching my right arm like a hawk waiting to see if the few minutes the tubing had been wrapped around my arm had given me lymphedema - as if I would see it start to swell before my very eyes!  Another thing to worry about.  Luckily, it never happened (whew).

But this nurse did attempt to get my IV in (on the left arm, of course) twice.  First, she had me run my hand under hot water for a few minutes to help the veins plump up.  She studied my hand and wrist for awhile. She asked me if I'd ever had an IV on the inside of my wrist, the part right below the palm of the hand.  I said I thought I'd had, because I remember that it hurt going in, but it was OK once it was in.  I told her if she wanted to try it, that was fine with me.  Never again.  She tried it and I don't even know if she got a vein or not because it hurt so bad that she took it out before she could test it! 

Then she tried another vein that ran down from my finger to the side of my knuckle, but that one "blew."  That was five total failed attempts and I was very much "over it" by then.

I wasn't sure what was going to happen next - would they send me home?  But they had a better idea - they called the nurse's station at Oncology on the 11th floor and sent me up there.  Of course, all the nurses there know me from my chemo and Herceptin treatments, and Gina, once of the nurses who treated me before, took care of me.  She had me run my hand under warm water too, and then she got a vein in the back of my hand on the first try.  FINALLY!  It took six attempts, but I finally had a working IV.

I headed back down to Radiation Oncology and they brought me into the CT room.  First, they had me lie down on the table on top of a bean-bag chair type pillow which ran from my waist to above my head and they positioned my arms over my head.  Then, they sucked the air out of the bean bag pillow which in effect made a mold of my body.  I will need to lie in this mold for each of my treatments because it's very important that I am in the same position and my body is very still while I am getting radiation so that the beams can be extremely targeted.

The mold took 2 or 3 tries before it was just right - which I was glad about because after a while holding my right arm above my head started to get very uncomfortable, since it was still recovering from surgery.  Luckily on the last mold I was able to lower it a bit so it won't need to be so high every time I go (although I suspect my arm is a lot stronger now than it was during the planning session just two weeks ago - time heals).

There was a lot of repositioning going on throughout the planning session, and a few different points the technicians had to draw on me with marker.  I couldn't entirely follow everything they were doing since I was lying there in the mold the whole time and couldn't look anywhere but at the ceiling or the inside of the CT machine.

They eventually gave me the CT contrast through the IV and I felt the familiar warmth of the contrast in my body.  During the scan I was in the room by myself for awhile, just lying there trying not to move. 

Afterwards, Dr. Evans came in and said everything went great - they got exactly what they needed and I was a good patient in that I didn't move at all.  Whew!

But I wasn't done yet... they still had to give me several tiny tattoos on my body.  When I come for treatment, lasers will be lined up with the tattoos to ensure that I am in the right position and everything is in the right place before they start blasting me with radiation.

The technician said it would sting a bit and then he started - he is right, it did sting, but since the tattoos are tiny dots, it only hurts for a second and then it's done.  It didn't bother me too much until they did one on my solar plexus... as you can imagine there is no fleshy cushion there and it HURT!  It felt like the needle touched my bone.  At that point the stress of the whole day - from the 6 needle sticks, to not eating or drinking anything, to lying on my back for a couple hours while people drew on my body, all caught up to me and I started to cry.  I felt silly for doing so since it was the end of the day and I was just about finally done, but I couldn't help it.  The technicians were all really nice and one of them held my hands through the tattoo session and that made me feel better.

It wasn't until I got home that I even looked down to see my new tattoos.  There was green and black marker all over - boxes, circles and little dots.  There was a series of green dots down one side of my liver surgery scar, and at first I was terrified that they were tattoos, since they were pretty large and noticable!  Luckily, once I showered I realized they were just marker - whew!

All in all, I ended up with seven tiny blue tattoos.  Five run from the center of my chest down to the side of my belly button, and there is one each on either side of my ribs.  They aren't too noticeable unless you really look, so that is good.

Now, I have to wait 3-4 weeks while Dr. Evans does the "planning" and once they are ready for me, they will call me to come in for my first treatment.

In the meantime, I have to see a neurosurgeon before treatment starts, just to evaluate me and meet me in case I ever need one (um, let's hope I don't!). 

I have enjoyed the last two weeks of no doctor's appointments, spending my last week of recovery at the beach with my family, and then going back to work this past week.  But of course it won't be long before I'm back at the hospital - I have a Herceptin treatment on Wednesday and then the appointment with the neurosurgeon on Friday...


  1. Wow that was a long crazy day! You are a trooper. Good luck at your appointment on Friday.

  2. You need to post a picture of your look amazing and need to show it off!!!

  3. I just want you to know how proud we are of your courage. You have handled these hurtles with such grace. Praying for you & missing you, Love Aunt Patti & Uncle Bruce

  4. you are so strong! you are an inspiration! hope everything went well yesterday! ♥♥

  5. You totally should have gotten them to give you a tattoo that said "F*U Cancer". That would be hard core=)