Trepidation

Photo courtesy of morgueFile

December 9, 2010
“This is not normal. I’ll need to do a biopsy.”
A fear washes over me. Is it more cancer?

The doctor makes no promises.

I make my next appointment and leave the doctor’s office numb. The biopsy is Monday. The weekend looms before me.

On Friday the numbness gradually turns to fury. I try to contain it, but it slips out occasionally. I look for a distraction, but everyone is busy.  I take a sleeping pill and go to bed early. I just want the days to pass quickly. I need to know.

On Saturday I work. Depression sets in. I don’t call anyone. I don’t want to see anyone or talk to anyone. I stare at Netflix all night, then go to bed.

Today is Sunday. The rage returns. I want to throw something, hit something, break something, whip my body around in a frenzy until I drop exhausted. I want to roar my pain.

Instead I stare mutely, looking for distraction.

Tomorrow is the biopsy.

 

 

©2010 frayedges and http://www.frayedges.wordpress.com

Part IV: Little Hiroshima

Today, I got all my test results back, and they were all good. I do not have the gene mutation for breast cancer, so I won’t need any more surgery. My oncologist, whose last name is Calvo (I tell him in Spanish that it is ironic that he has the last name of Calvo, meaning bald in Spanish, and he regularly administers treatments that make patients bald. He laughs at my comment and tells the nurse what I said in English.), does not believe that the risks of chemotherapy outweigh the benefits. In my case, radiation treatment plus tamoxifen for five years will give me the same results. That is good news, of course.

So this week I start my radiation treatments. I go every morning at the same time and get zapped for about one minute total. It is painless, but there are, of course side effects, both physical and emotional. The technicians measure and mark me as I lie on the table, and go about their business like any other day. I lie there and mentally hum in the dark. This is no big deal.

A subconscious part of me thinks about what might happen in the future as a result of these treatments. How bad will the skin reaction be? Will I suffer from fatigue? Will I have lung damage? Will my bones be weakened? How badly will my white blood cell counts be affected? Will I get sick because of a compromised immune system (kinda have a bit of a sore throat today)? Will I have future cancers from the radiation I am exposed to? I read that the reason so many Japanese women got breast cancer after the bomb was dropped was because they experienced whole body radiation, so my chances are greatly reduced since this is a very targeted dose, but still…

The subconscious finally wins out. After my first treatment on Monday, I am ill. I am short of breath, weak, and nauseous. I ask the technicians if this is normal. They say no. Then one suggests that I had a nervous reaction. I realize when she says it that it is true. I am having a panic attack. Ok, I resolve to keep that under control. I hum in the dark.

By Thursday, I am feeling horrible and hiding it well. I have not been sleeping even though I am tired. I ask the technician if I can please see the nurse after my treatment. She looks at me and I can see that she is concerned. I can see the questions in her eyes as she asks me if I am ok. I tell her I am fine, but I want to see the nurse. My shoulders are tight, my smile is tight. She hesitates a moment, and I pray that she will not ask me another question. She says “ok,” and leaves it at that. She knows I will see the nurse, but I can see the doubt in her face. I guess I am not hiding it so well at that moment. After they nuke me, I meet with the nurse. I tell her I haven’t been sleeping, but that I am afraid to take anything because I don’t know if there will be any interactions with the radiation treatment.

I struggle as I feel my throat tighten and my face get hot. I bite my tongue, but the tears come, and I am embarrassed, ashamed at being weak. The nurse tells me it’s ok. She brings me tissues and sits near me. She tells me it happens to all the patients, sometimes early on, sometimes later. All the cancer patients reach their threshold. She asks me what’s going on, and I think, it is everything. I cannot sleep, I have no money, I can’t find a full-time job, I feel useless, worthless. I am worried about the effects of the radiation. Will I ever be able to date again? Will anyone want me? I do not feel attractive at all. Will I ever have children? Do I want them? Will my life ever get better?

I am afraid of dying.

But I don’t tell her these things. I am ashamed. So I tell her only that I am tired, can’t sleep, that I am broke. She addresses the areas she can fix. She tells me to take the melatonin I have at home to help me sleep, and if that doesn’t help, she will get me a prescription for sleeping pills. She tells me about a program that the American Cancer Society has. They give cancer patients $75 gas cards to get to and from their treatments. The only requirements are that you are undergoing cancer treatment and that the doctor or nurse sign the form. The cards are only while supplies last since it is funded completely through donations. She gives me the form, signs it, and I mail it when I get home later. I wipe my eyes as I exit the room. I plaster a smile on my face and do not look anyone in the eye as I escape the clinic with my head tucked low. I do not want anyone to know I have been crying. Fortunately, I work from home on this day, so I do not need to see anyone. That night I take the melatonin and finally sleep. I feel better, not great, on Friday. I am able to finally realize what has happened.

All this time I have been telling myself that it’s no big deal. If you look at me, you would never know there was anything wrong. I haven’t lost my hair/didn’t need a mastectomy/haven’t become sick and emaciated/am not dying; therefore, I don’t have a right to be worried/feel scared/feel sorry for myself/need special treatment.

I was wrong. It is a big deal. I am weakened by the whole ordeal. My whole life and everything I do has changed. I have to find my new normal.

I have lymphedema (fluid build up) as a result of trying to shovel snow. It begins at my sternum, runs across my ribcage all the way up to my armpit, and reaches down to the base of my ribcage. It is uncomfortable and painful. Four weeks after my surgery, I thought I was alright, recovered, so I stepped outside and dug a path around the house so I could open the back door that had been snowed shut. Shoveling snow was easy for me before, I didn’t think it would be a problem. But now I am physically unable to do it. In December, I could walk three miles. Now, in March, I cannot even walk one mile. When I try, the lymphedema becomes worse, and I am tired and in pain. The radiation treatments also make the fluid build-up increase.

I see an occupational therapist now who is working on alleviating the swelling. Instead of walking, I have taken up swimming. The compression of the water keeps the fluid from building, and the activity is helping me to get back into shape. The therapy and swimming are working, and the swelling is now only under my arm. But I feel so much older simply because I cannot do the things I could do before. I swim and I wonder what the other people think of me moving so slowly back and forth in the pool, like an old woman. I want to tell them that I am not out of shape, that I am stronger, that I can swim, that this is physical therapy, but that is too much information. And they probably don’t even think about me. I am just self conscious.

The past year and a half has been one big negative ordeal after another, and I have not wanted to really acknowledge that any of it has affected me to any significant degree. But it has. The violence I was exposed to during a year in Culiacan, Mexico has made me nervous about safety. I was afraid for a long time to leave the house, but I forced myself so I wouldn’t become a basket case. I am always sure to check that the the doors are locked. I don’t like the locks on our doors. They are so flimsy, but the dog makes me feel safer. I feel a little bit of fear every time I am in a restaurant, and I like to be able to see the door, just in case. This is a result of being in a restaurant hold-up in Culiacan. The fear has diminished over time, but not disappeared.

The lack of a home and a job for nearly a year when I returned to the United States has made me fret about my future. Cancer has made me face my own mortality. Ironically, my mortality may just prevent me from suffering financially if I die before I have any real financial trouble (A bit of rather dark humor.).

I write and it offers me relief. The demons are freed.

I try to see the funny side of every situation. It makes it all manageable. I use any local resources I can find to help me. I was upfront with all my doctors about my financial situation. As a result, the hospital gave me a discount on all out-of-pocket expenses (including insurance deductible) since I earned so little over the past year while I was mostly unemployed. The breast evaluation center wrote off the balance I owed them. They used the donations that they got from the Making Strides Breast Cancer Walk. I feel better knowing that I contributed a bit since I did the walk with co-workers the previous October. I decide to continue to support them in the future.

So my mood today is somber, but I think it can’t hurt to occasionally take life seriously. I won’t do this too often, though, because then I may forget to see the good stuff and the funny stuff. Life is so much better when you are laughing.

©2010 frayedges and http://www.frayedges.wordpress.com

abeam

Part III: Taking Control

The surgery was successful. There was no cancer in the surrounding tissues or in the lymph nodes. I rest on Saturday and Sunday, then get up on Monday to go to work. I get up on Tuesday and Wednesday and go to work. On Thursday, I cannot get up. I am sick in every corner of my body. I call my boss, who tells me that she was about to tell me to stay home, but she knew I needed to come to that conclusion myself. I call the nurse who tells me in a firm, angry voice that I should not have been going to work, that I could cause all kinds of complications. The sharp tone of her words cuts through me like a knife and I struggle not to cry. She is just doing her job, but if I don’t work, I don’t get paid.

A week passes, an entire week in bed. I don’t have too much pain, and I am not as tired as I was the first week. I begin to resume normal activities. I go to the doctor for follow-up after surgery. I am surprised when another doctor- male and cute- enters the room. He is the resident that will be assisting my doctor today on her rounds.

No, no, no! Not again! I mean what is this? Did the powers that be have a conference and decide that this semester, since I would be having breast cancer treatment, all of the cute, male residents would be doing their rounds in the world of boobs? Where are all the female residents?

The resident has a look of confusion on his face. He looks at me, then looks at his chart. He comments that they don’t usually see patients as young as me. He seems to have difficulty looking me in the eye as he interviews me on my progress since the surgery. I watch in amusement as he talks to me. His eyes are glued to my chest until they flit away to look at some other part of the room before coming to rest on my breasts again. For now, at least, they are still covered. He finishes with his routine questions, then leaves to get the doctor. He returns a few minutes later, shadowing my doctor. As the doctor pulls back my gown, the resident eagerly looks at my incision and my breast but still does not look me in the eye.

Awkward.

Two guys have seen the goods, and I haven’t even gotten dinner or a movie. I have a feeling that my future holds a lot more of this. I am about ready to just take a picture of myself and paste it on a local billboard. Get it over with and out of the way.

It turns out cancer is not as cut and dried as I thought. The next step is to send the tumor to pathology so that they can map the genes in the tumor. This will take about two weeks. Based on which genes are switched on and which are switched off, the pathologist can determine my risk of recurrence. If it is very likely that the cancer will return, I will need chemotherapy. Meanwhile, I am being referred to a radiation oncologist and a general oncologist for more treatment. I am waiting to hear from them to set up appointments. I think of those who have money and can get everything done at once. They have answers right away. I have to wait. It does not seem fair that I have to deal with the cancer and the months of waiting too, but I have no other options.

While I wait, I decide to make some changes. I decide to limit myself to an average of two drinks per week since, according to the latest studies, women who drink more than that have a higher recurrence of breast cancer. Since my diet, weight, and level of exercise are all fine, I do research to try and see what other factors might have contributed to me getting cancer. I suspect that even though I cook at home, food processing may be a factor. I am now very skeptical of the hormones and antibiotics they feed cows, pigs, and chickens to make them produce more milk and meat in a shorter period of time.

I am trying to go organic as much as possible to limit my exposure to toxins. Of course, this is more expensive. But my health is worth it. You literally are what you eat. I have nothing to lose if I am wrong here. I am eating healthier. When I bring this up to my doctors, they all say the same thing: “I think that’s a very good idea. It’s a shame that people have to pay more money to eat healthy.” My doctor also tells me to drink more green tea. I tell her that I am already drinking it because I like it and it’s free at work.

To try to limit the expense of the food, I look for some alternatives. I join a CSA (Community Shared Agriculture). For $20 a week, a local, organic farm delivers to my door a half bushel of fresh produce from their fields. I buy fresh eggs at Hallmark! Ha ha! The owner of the Hallmark up the street has a local hobby farm with some chickens (one who is named Mabel). He brings in eggs from the farm every day to sell. You pay cash, since it isn’t part of Hallmark, and they are absolutely delicious. They remind me of the eggs we used to get from the chickens I raised as a kid- hard shells, rich, brightly colored yolks, flavorful.

I need to feel some control.

©2010 frayedges and http://www.frayedges.wordpress.com