35 E-mail: after chemo - before radiation

7/20/2006

Today is Thursday. It is the second Thursday after my last round of chemo, and the first time in months that I haven’t had chemo on the second Thursday after the last round. I think it’s also the first time in months that my body has been able to fight the latest infection threatening to make me sick. I’ve got a cough that came from a sore throat two days ago, but other than that I feel pretty good.

The neuropathy in my fingers is almost gone. It’s taking longer to fade from my toes and my face is breaking out one last time, but I’m not nauseated anymore. That means I don’t need to take the anti-nausea medication and that means my continual battle with feeling light headed is over. I think it’s funny that it took me all 8 rounds of chemotherapy before I figured out that my precious Zofran pills were making me light headed. Now my private pharmaceutical collection can be reduced. The bathroom countertop is going to look empty pretty soon.

The hair on the back of my head has gotten just long enough for the fuzz to become soft. It’s still sparse at the top of my head and the hairs are so pale that I can only see them if I turn my head just so. During the times when I see them, though, I feel waves of happiness. Then I look at my thin, thin eyebrows (and more eyebrow hairs fall out every day) and my missing eyelashes and I wonder when those will grow back. I have one eyelash apiece on the lower part of each eye. I’ve got more than one lash on the upper part but there are obvious gaps. Soon the stripes in my fingernails will start growing out and the outward signs of cancer treatment will be hidden.

Some days I feel comfortable going bald in public. I’ve picked up Kelric from the Montessori school bald. The children stared but the adults didn’t. I’ve shopped at Central Market bald. People looked at me maybe a second longer than usual but nobody gawked or made me feel self-conscious. I always feel a little weird, though, whenever I’m out in anything but my wig. I’m part of a certain population now and I would rather chose who knows about it than have my head broadcast it for me.

I think back on all the messages I’ve sent out where I remark on my hair or absence of hair. I know that it bothers Guy constantly that his hair has thinned out and he’s mostly bald on the top of his head. It never stops bothering him no matter how many times I tell him that I don’t care (I really don’t) or how many times I tell him I think he looks handsome (I really do). Now that I’m bald he challenges me, “Now do you understand?” Sadly, I do. I think our hair is part of our personal identity. I remember feeling beautiful when I had good hair days. I don’t feel as pretty without hair. I miss that “good hair day” pick-me-up. My chief excitement now is that I get to use shampoo and conditioner again for my new fuzz, even though the amount of shampoo I need is less than a pea-sized dollop on my finger.

Last week I finally got angry about having cancer. I went through several days of depression after my last chemo. It was disorienting at first to be released from the routine of chemo every other week yet still feel the nasty side effects from my last treatment. Taxol interfered with my ability to feel when I was hungry or full, so I ate too much and gained weight. The weight gain added to my depression, and I got mad at myself for feeling depressed. Then I felt impatient to get radiation over with and I felt especially impatient to get the last chemo’s side effects over with. I get hot flashes nearly every day now and each one is a reminder that I’m a cancer patient and I’ve just gone through chemo and my reproductive system has shut down. It’s a grim pleasure seeing the shock on a nurse’s face when I am asked, like I was yesterday, for the date of my last menstrual period and I quote a date from a year ago. Oh yeah… There was a baby followed by chemotherapy. The shock is always followed by chagrin. Inside, I quietly snicker. If I have to live it, at least I can be allowed a snicker at someone else’s discomfort, right? I’ve always hated that question at doctor visits anyway.

So last week I was depressed, angry, and impatient. In short, I went through a normal phase most people go through after chemo. You’ve been surrounded by this team of compassionate medical people who are very concerned about your battle with cancer and how you’re feeling and coping, and then you don’t see these people anymore and they don’t have much reason to continue asking how you’re doing. What’s I’ve read is that the most common thing people feel after chemo is a sense of, “Now what?” Is the cancer really gone? How will I know if it comes back if the medical people aren’t paying such close attention anymore?

I didn’t think I would go through that, but last week got me seriously thinking about going to a therapist. This week I’m much better.

Last Saturday Guy and I celebrated our wedding anniversary. We stayed at the Baines House, a bed and breakfast in Salado, Texas. I rented the Seaberry Cottage which gave us a private building apart from the main house and a private garden in front of the cottage. It was quiet, dark, and peaceful out there. We went without a plan other than where we would sleep, and we found a very good restaurant for a special anniversary dinner and we entertained ourselves in the afternoon by visiting local art galleries. I’ve had my fill of bluebonnet-filled landscape paintings for a while, that’s for sure. We relaxed. We napped. We read books. We talked. We reconnected as a couple and enjoyed our time away from home. My mom stayed at our house and looked after Kelric and we quietly celebrated our five years of marriage and didn’t worry about our son. I called, once, and was happy to hear that Kelric loved his bath and went to sleep at the regular time. In the morning we enjoyed a fabulous breakfast at the B&B and enjoyed the strawberry shortcake they served as dessert.

The night before at our fancy dinner I had a dessert which was absolutely phenomenal. It was a chocolate pudding cake with banana ice cream. I almost always gravitate towards vanilla-flavored desserts instead of chocolate, so it was a departure from the norm for me to try a dessert like that but I’m so glad I did. I started crafting a poem about dessert while I was eating mine, and I wrote it down before I went to bed that night. Since the B&B owners advertise that they always serve dessert with breakfast, and since they left a little book in our room with blank pages where people who have stayed there have written about how nice the room was and how good the breakfast food was, I decided I write how nice the room was on one page and my poem “Dessert” on the next page. That was fun. Then we returned home and somehow life became more bearable. That short time away from all the stress was just what I needed to find my center again. Feeling carefree and special with my husband in an unfamiliar town was a good thing for both of us. It felt like a brief second honeymoon.

Now it’s Thursday, July 20th and life and cancer treatments go on. That brings me to yesterday’s initial consultation with my radiologist, a Dr. Timothy Dziuk (pronounced “Juke” with a “Z” sound instead of a hard “J”). He asked who my surgeon was. I told him Dr. Kelly Martinez. He responded that she is very good. Dr. Dziuk is not the first person to tell me that I got a good breast surgeon, so I’m glad that my obstetrician recommended her and I’m glad I went with that recommendation. Dr. Dziuk confirmed that my oncologist Dr. Carsten Kampe referred me to him. I got very lucky when I randomly picked Dr. Kampe to be my oncologist. Not only is he a nice person who is dedicated to his field of medicine, but he is also a meticulous note taker who has compiled a very thick, very useful file on me. Dr. Kampe never made me feel rushed during our visits before each chemo, even when I had a lot of questions. He seemed to like it that I did my own reading and research and then came back prepared with notes and questions, and he seemed to like it that I wanted to understand why he selected the treatment he selected and how it would help me.

I believe I wrote last time that I hoped I qualified for a new kind of radiation treatment but I didn’t want to give details for fear of jinxing myself. Well I needn’t have worried. I failed to qualify for the new kind of treatment and it was never an option for me.

The new treatment is called Mammosite. This type of radiation involves a catheter inserted into the breast through the cavity left by the lumpectomy. A balloon is inflated from the catheter to fill the cavity and then a radioactive pellet is inserted through the catheter tube and into the balloon. The pellet remains there for about 20 minutes and then it is removed and the balloon is deflated. You do this in the morning and afternoon for five days of treatment and you’re done with radiation. You don’t have to worry about the fatigue or skin reaction that’s similar to sunburn that are common side effects of radiation. The catheter remains in the body for 7 to 10 days and then is removed with local or no anesthesia. I really, really wanted this treatment because I want my non-cancer life back. Now.

No, that would be too easy. I get to look forward to 33 treatments of radiation once a day, Monday through Friday, beginning August 1st and ending September 15th.

I don’t qualify for Mammosite for many reasons. First of all I’m too young. They prefer to treat women who are 45 years old or older. I’m 35. Also, the size of my tumor was too big. Tumors should be 2 cm or less for Mammosite. Mine was at least 3.5 cm according to the report the radiologist had. I was sure that my tumor was 2.5 cm according to the report my oncologist had, so now I’m very curious as to which office has the typo. Tomorrow I’ll meet with my breast surgeon to plan Monday’s surgery to remove the port. I’ll ask her what size it was and see if I get an answer that makes sense.

The location of my tumor is in the wrong place for Mammosite radiation. The balloon stretches the skin. To avoid radiation burns there has to be a minimum distance between the balloon while inflated and the skin and my tumor was close to the skin and on the upper part of the breast, so my skin would be stretched too thin with the balloon inflated if I had the Mammosite treatment. Oh, and I’m forgetting that my cancer was too aggressive and we’ve waited too long to begin radiation for the Mammosite program. Aggressive cancer cells replicate faster and travel distances faster throughout the body. Because my cancer was of the aggressive variety, (it was a 9 of 9 on the Bloom Richardson scale) it is possible that microscopic cells left behind from the lumpectomy have traveled to other parts of the breast. That gives me a higher chance of recurrence elsewhere in my breast and not just at the site of the lumpectomy.

I suppose I should mention here that chemotherapy, for reasons that baffle oncologists, does not seem to kill all the cancer cells in the breast that held the original tumor. Chemo does a great job at killing cancer cells everywhere else in the body, but not in the breast tissue. Chemo can shrink the size of tumors that are in the breasts. In fact chemotherapy is sometimes used as a pre-surgery tumor shrinking strategy when tumors are too large to remove. In my case that wasn’t an option since my lumpectomy was unplanned and the cancer wasn’t discovered until the surgeon was removing what she thought was a mass brought on my pregnancy hormones.

A Mammosite treatment of radiation would not travel far enough in my breast to kill cancer cells that could have spread to the parts farthest away from the tumor. Also, since I’ve had chemotherapy first and not radiation first, the cancer cells have had more time to travel and would therefore be farther away than if I had had radiation first. They don’t wait longer than 3-4 weeks after a lumpectomy before beginning Mammosite treatments and my lumpectomy was several months ago.

The good news is that my chest seems built for traditional radiation treatments. I don’t have any curves or swells in my torso that would cause them to have to irradiate more than a small portion of my lung while they position the radiation to get my entire breast for 25 treatments. 8 treatments will not penetrate through my body and they will be aimed only at the site of the lumpectomy. The 25 entire breast treatments of radiation, however, will pass through my body and they will get the upper 10 percent of my right lung. I can expect that part of my lung to stop functioning. I can also expect my ribs to become brittle over the years, so I will be more likely to get a rib fracture on the right side of my chest than my left side. That’s the bad news. The good news is that there is a 30% chance of recurrence if I skipped radiation and I’m drastically reducing that risk by enduring the 33 treatments. I think it’s a fair trade.

On July 31st I will go in for a CT scan but I won’t have to drink the barium sulfate nasty stuff and I won’t have to have the IV for the iodine contrast agent. Instead, I’ll just lay in the CT machine and the manual process which used to take an hour with technicians taking measurements and marking up my body will only take about 10 minutes. The machine will create slides of my breast and the radiologist will compile those slides into a plan that will show where to position the radiation machine. I’ll get marked with dots which I will have to re-mark every day with a special marker if they wash off in the shower. I’m allergic to tape now. I laughed when my chart showed it. Dr. Kampe is very thorough with his notations and that little detail made it to the chart passed along to my radiologist. It’s unfortunate but true; a bandage with traditional adhesive will cause a red mark on my skin that takes over two weeks to heal. So while they would normally use tape somehow to show where the dots go, they won’t use tape on me. That puts me at risk of possibly having to get the dots tattooed onto my chest – an older procedure that I wish to escape. I plan to be real good about keeping the dots visible with my special marker.

Everything I’ve read says that in radiation you have to avoid using scented soaps or deodorant because the metals will interfere with radiation. My radiologist told me that’s the way it used to be and I don’t have to change a thing about my routine. I am so relieved.

I’m also tired. It’s 10:35 p.m. and I should have gone to bed half an hour ago!

Good night,
Angela

P.S. Kelric has discovered that he has feet. His new favorite pastime is holding his feet, which is incredibly cute but makes changing his diapers challenging. This evening after his bath he managed to put his own arm into his sleeve while I struggled to get his foot into his little bear-covered pajama footie. What an amazing baby! Okay, I know it was just blind luck, but it was cool nevertheless!

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