37 E-mail: beginning of radiation

8/3/2006

This week marks the beginning of radiation for me. I can’t understand why I’m so depressed about it.

Monday was fine. That’s the date of my “sim,” the simulation of my body created in the CT scan machine. I laid on the table with my right arm holding a grip above my head. Lasers created cross marks on my abdomen and a technician marked my skin with a red marker to show the cross marks of the laser beams. These marks in three places around my mid-section help them calibrate the equipment to the same position each time which in turn helps control exactly where the radiation goes. Clear adhesive tape was placed over the marks so that they wouldn’t wash off in the shower. I am strictly forbidden to soap or scrub them in any way. Monday’s session involved the marks, lying down on the CT scan table, and going through one pass in the CT machine with it whirring at full speed. Then we were done.

I asked to look at my CT scan on the computer before I left. The technicians indulged me. As a result I got to see my lungs, heart, stomach, kidneys, spleen, and aorta. It was pretty neat. It reminded me of the long ultrasound session at twenty-something weeks when we got our first good look at Kelric and his internal organs. We got to see the four chambers of his heart that day and it really impressed us. Guy asked if I could see the site where the lumpectomy had been but I could not. The display went by quickly.

So Tuesday I showed up for my first dose of radiation. I asked Guy to come with me for moral support and so he would know what the equipment looked like. The technicians let him stand with them next to the computers that run the million dollar radiation machine called a gantry. He could see me the whole time thanks to a closed circuit video feed. Nothing like lying on a table with half my torso exposed knowing strangers can see me on a camera when I can’t see them.

The first treatment of radiation is the longest, I’m told. It started by returning to the original CT scan machine where the technicians used the lasers once again to check the measurements and add purple marks to my body, this time above the breast. Then I went into the radiation room and laid on a similar long, thin table on rails with the gantry at the head. Here’s a link to see what one looks like. http://www1.va.gov/ntxradoncology/page.cfm?pg=2 One technician moved a green foam thing to support my neck as I lay down. The other technician put a strap around my feet to keep them together then she adjusted my position under the lasers by pulling the paper I’m lying on. Also a cushiony thing shaped like a triangle is placed under my knees for support. I understand now that this is part of the daily setup process for radiation.

They used the gantry to take chest x-rays first. I’m not sure why. The gantry machine rotates around me while I lie on the table with my right arm over my head and my left arm at my side. It was interesting to watch the thing take on different shapes. According to the article on the web site this is new technology that shields organs from radiation damage and what I called a “thing” is actually “a newly developed field shaping system called multileaf collimation.”

During the first blast of radiation with a buzzer letting me know when it starts and stops, I had a strong impulse to leap off the table and run away. What kept me in place was fear that organs would get damaged if I moved. I had similar impulses Wednesday and today, too, though the intensity was less.

The radiation treatments don’t take very long. There is a long blast that’s between 30 seconds and a minute, then a short one of maybe 4 seconds. The gantry rotates what I believe must be 180 degrees and I get another long blast that’s about 30 seconds long followed by another short one. Then we’re done. The strap is removed from my feet, the pillow thing removed from under my knees, and a technician or two helps me sit up. Then I’m allowed to put my arm back in the sleeve so the hospital “johnny” covers my torso again and I’m free to return to the dressing room to get dressed and leave.

For my first treatment on Tuesday we were asked to stay a little longer to meet with the radiologist. He’ll see me every Tuesday to keep an eye on possible skin reactions. It will probably be a few week into treatment before the first reactions start to appear, if I have any.

Radiation is surreal to me. I lie on this table and listen to a buzzer while expensive equipment rotates and adjusts. The room is darkened with the main lights turned off and small fluorescent lights in recessed canisters creating enough glow that you can see around the room. The temperature is moderate so I’m not freezing while I’m half naked. That’s a relief.

So far I hate radiation more than chemotherapy. Maybe it’s because I got to keep my clothes on during chemo. Oddly enough chemo felt less invasive. It hurt more since my skin got pierced with a needle every time they drew blood or accessed my port, but that hurt usually stopped or eased up after just a few minutes. Radiation doesn’t hurt at all yet I find myself longing for the days of infusions. I don’t understand.

I’m not sure why I feel so prudish about this. During the days after Kelric’s birth when we were still in the hospital, I would nurse Kelric with my breasts fully exposed and it didn’t bother me a bit to have the nurses come and go. They would see the lumpectomy scar and offer condolences. Other than that I didn’t feel self-conscious. I don’t exactly feel self-conscious with the radiation routine. I just feel emotionally tired. Tired of having to do something uncomfortable around people I don’t know for the sake of killing the cancer cells. Tired of thinking about cancer. Tired of adjusting my work schedule to accommodate cancer treatments. Earlier this week I found myself crying and apologizing to Guy for getting sick. Naturally he reminded me that I had no control over getting sick and he would prefer that I go through cancer treatments than risk it coming back by having no treatments. Just being held in his strong arms while he assured me “It’s okay” was enough to calm me down.

It was so nice once the side effects wore off from the last round of Taxol and before I started radiation. It was so nice to have a normal life again. Even with the surgery and having to be careful not to mess with the steri-strips or put pressure on the site where the port used to be, I still felt more normal than I do now.

And oddly enough, I’ve taken this week to grieve my diagnosis all over again. I’m actually starting to feel well and truly sorry for myself for what I believe is the first time. Maybe the shock has worn off and I’m past the initial phase of processing that I had cancer. I’ve accepted my diagnosis but now it scares the willies out of me. It disturbed me to learn that my tumor was 3.5 cm instead of 2.5 cm. That should be just a little thing but it’s not to me. That extra centimeter puts me in a lower survival category and I don’t like it.

I met with my breast surgeon Monday afternoon for a follow-up exam after the port removal surgery. I prepared a list of questions and finally got to ask her why certain things were done the way they were done.

Why, for example, was it so freaking important to induce Kelric to come early? He was only a few weeks away from term. Why couldn’t we wait it out?

I asked this question knowing from Dr. Susan Love’s book that it is common practice to deliver the babies early when the mothers have breast cancer. On the other hand I’ve met women who delayed the start of their treatments by four weeks or so. I know that every case is different but why did we have to deliver Kelric early? It wasn’t that Kelric was harmed in any way by an early delivery. It’s that we had several less weeks to prepare for his arrival than we were expecting to have and that threw our household into chaos and made our son’s arrival a mixture of joy and great sadness.

Her answer was that the baby was far enough along to be safely delivered early and she needed him out before she could perform the sentinel node biopsy surgery because that required general anesthesia. The surgery to check for cancer in my lymph nodes was important for staging the cancer, and learning what stage I was in affected the treatment I was given. Frankly, she said to me, she was surprised that my lymph nodes were negative for cancer. Given the large size of my tumor (and the fact that the pathology report showed signs of invasion of cancer into my bloodstream and my lymphatic system), it was almost certain that the cancer had spread to my lymph nodes. She was shocked and happy to see that it hadn’t spread yet. In retrospect I’m happy that I had a surgeon who was skilled enough to use the sentinel lymph nodes as a statistical sample of cancer invasion. It’s a much more difficult surgery than taking all the lymph nodes and checking to see which ones had cancer and which ones didn’t.

Putting the port in my arm is a more difficult procedure as well, per the book by Dr. Love. I seem to be the only one with a port in my arm in the growing number of survivors in the Pink Ribbon Cowgirls group. All these women who have or had ports in their chests ask me why mine is in my arm and I didn’t know why until this week.

My surgeon has a personal preference to put ports in the arm. She said most doctors around Austin prefer the chest but she prefers the arm. It’s one less scar on the chest, for one thing. I know other women have told me with young children they get bumped by their little ones and it hurts. Kelric only bonked his head on my port when I’d be foolish enough to put his head on that arm.

I mentioned that I had problems with blood clots with the port in my arm. She said that’s a risk of ports in the chest, too. Clots and infections are the common risks of ports. Guess I’m lucky I didn’t get an infection there.

So what color was the tumor? I asked. Guy told me the surgeon could tell by looking at the tumor that it was cancerous. What color is cancer? It’s tan, she told me. She could tell it was cancer by the color, the size, and the way it was intruding on the tissue around it.

I asked what happens during the follow-up visits once my treatments are over. She said I’ll alternate between her and my oncologist Dr. Kampe, seeing one then the other every four months for the next three years. If my cancer has not come back in the next three years, then I will have reached an important milestone and the odds will be that it will never come back. After that, I’ll see one then the other every six months for the rest of my life. That way, between the office visits and regular mammograms they’ll keep a close eye out for recurrence.

What about scans? I asked. She said scans are used to diagnose symptoms. If I have no symptoms, then there’s no need for a scan. Scans cost money, so I’m relieved not to have them on a regular basis.

I finally got a copy of the final pathology report and I asked questions about what different terms meant. It felt good to understand things a little better. She put the 21 copies of Pink Ribbon Cowgirl flyers I had brought with me in one of the flyer dispenser containers on a wall of brochures and flyers. Maybe we’ll get new members from that. I hope so because the group is helpful to me.

I learned that my breast surgeon specializes in breast cancer. That’s all she does. I think my obstetrician sent me to her to rule out cancer as a cause for my lump. The preliminary ultrasound scans showed only fluid at the time, not a mass of any kind. Everyone was surprised on the day of the surgery when we learned it was cancer. As scary and awful as it was, I am grateful that the diagnosis didn’t get delayed for several months.

I keep telling Guy I want him to take a picture of my face very soon. When I first told him this I had 8 eyelashes on an upper eyelid and one eyelash on the lower one. The other eye had something like 12 lashes on the upper lid and 1 on the lower lid. Now I have no “adult” eyelashes on my lower lids. I have only “baby” lashes growing in. I’m down to one lash each on the upper lids. The “baby” lashes are short and pale, but they are slowly growing in and replacing what I’ve lost. Wish they’d hurry up. Guy says my faces looks “wrong” in a subtle way. The lack of eyelashes and the shadows they create mark me as surely as the short fuzzy hair that I’m a chemotherapy survivor. Only my wig doesn’t hid the eyelash business.

Well, enough about that, eh? So it’s been a tough week. I’m getting through it. I’ll get a break Saturday and Sunday. No radiation on weekends. And I’m having fun with my work lately, finally getting to dig into interesting projects with exciting potential for improving the way people work at our company. This week marks my first week back to full time hours, though radiation cuts into my schedule enough that I’m having to work an hour a day from home to make a 40-hour week. Still, I have normal amounts of energy finally and that’s a nice change. Last weekend I started reading articles on www.quackwatch.org and they were very interesting. My oncologist told me that’s one of his favorite web sites. I learned lots of interesting things there but this e-mail is long enough already.

I’m trying to think of a theme for a party to be held sometime in October to celebrate the end of cancer treatments. I would love to rent a hall and have dancing and live music, but we can’t afford that so I think I’ll host some kind of open house on a Sunday afternoon instead.

Guess I’ll have to think on it in my sleep. I’m going to bed now.

Cheers,
Angela

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