10/1/2006
Lots of things have happened that I haven’t made the time to write about. This entry plays “catch-up” with those events.
DOCTOR APPOINTMENTSIt’s been a little over two weeks since radiation treatments ended. I have a follow-up appointment with my radiation oncologist this coming Friday.
I neglected to report how things went a few weeks on a follow-up back with my oncologist. That appointment was on a Thursday. Guy went with me and we were both in good moods for the rest of the day. My oncologist said that things were looking good. I could discontinue taking the dreaded Coumadin pills and that meant I could discontinue the weekly INR tests. Hooray! No more regular blood work!
ALLERGY TESTINGI also failed to report that I got tested for allergies not long ago. Since my cancer treatments have gotten me over my fear of needles, I figured why not go for the allergy testing thing which has lots of needles. I joked with people that I loved needles so much that I needed to get a fix from another source since my cancer treatments were drying up.
Really the last thing I want is a continuation of shots or blood draws, but I’m tough and I can take it. As it turns out, allergy shots are nothing compared to what I’ve already experienced.
I endured the whole series of outdoor, indoor, and food allergy tests. First, from fear that chemo may have suppressed my immune system enough to block histamine production, they put a drop of something on my arm and scratched the skin lightly with a needle. I got a big red welt that itched like mad. That was a good thing because it meant my body was reacting normally to things that triggered allergies. I thought so.
Then a grid was drawn on my back and over a hundred different potential allergens were put on my skin, one drop at a time. A needle lightly scratched the skin in each drop of liquid and we waited to see where the welts would form.
Cedar pollen gave a huge, obvious reaction that left no doubt. No wonder I’m so miserably sick during cedar fever season here in Austin!
For the allergens that had some reaction but not the spectacular result of cedar, they injected something under the skin of my left arm and made a new grid with 16 different things.
In the end I learned I’m allergic to all the tree and grass pollens in the area as well as dogs and a few foods. The pollens come and go throughout the year but I’m allergic to so many of them that I’m reacting to something or another all year ‘round. That explains my embarrassing dependence on facial tissues.
Last Friday I went for my first allergy shot. I can expect to receive allergy shots for the next three years, with the frequency the most intense in the beginning. It’ll taper off to once a month eventually.
The needles are so fine that they don’t even hurt. I’m all for needles that don’t hurt. Several people have told me they’ve gone through allergy shots and the improvement to their quality of life was well worth the trouble. Good! It’s time for improvement.
GRIEVINGI had a conversation recently that helped give me unexpected clarity.
It started when the co-worker who had lost her husband visited with me for a little while and we talked about her grief. I cannot imagine how difficult it must be to lose a spouse. She cannot imagine what it must have been like to go through cancer treatments with a newborn in the house. As we talked we learned that we had more in common than we imagined.
Both of us were out of the office for two months. It felt strange coming back after the extended absence. Staff had turned over. People had moved to new locations within the office. Workloads had been redistributed so we didn’t exactly pick up where we left off. It was wild to hear her express how surreal it felt to be back and have so many things not be the same, and I heard myself say, “I know how you feel.” And I did.
We also learned that we have in common a mixture of reactions from people who don’t know us well. Some folks really want to know how we’re feeling and what’s going on and they ask and really listen to the answers. Some folks may want to know but they don’t want to upset us by asking so they don’t. It reminds me that people often don’t know how to act around people who are grieving. I’m one of them.
The more we talked the more I realized something very important. I’m in mourning.
Since the day of my diagnosis, I have been grieving.
I had breast cancer. It’s a big deal. My life will never be the same and I’m trying to figure out what that means now.
I’m also trying to define exactly what it is that I’m mourning. My husband thinks part of it is a loss of innocence. My body tried to kill me. I never thought it would do that. Now that I know it can do that I can never trust it the same way I did before. Everything takes on a “before cancer” or “after cancer” demarcation in the timeline of my personal history. I will spend the rest of my life wondering if my cancer has come back, and the only way I will know if I’m cured is if I die from some other cause.
FEARDealing with the fear of recurrence and the fear of metastasis is a hard thing for me these days. That fear was the most intense in the first weeks immediately following chemo. That was when I read that it doesn’t much matter if metastasis is caught early. Once breast cancer metastasizes it is treated as a chronic illness to be “managed” because it is so very difficult to cure. That’s not to say that it is impossible to cure, but metastasis generally kills you. I feel unlucky to have had cancer to begin with so I worry that I will not escape the low odds should my cancer metastasize.
A recurrence, on the other hand, is not such a bad thing because it can be treated with more chemo and possibly more radiation and catching it in the early stages can make a big, big difference. That is why I will remain diligent about going to all of my appointments with my breast surgeon and my awesome oncologist, Dr. Carsten Kampe of South Austin Cancer Center.
My husband likes to remind me that we caught my cancer fairly early. It was a stage II tumor and my lymph nodes weren’t affected. My early e-mails to loved ones show that I knew then that it was a 3.5 cm tumor. I don’t know at what point I began to think it was a 2.5 cm tumor. I guess wishful thinking tricked me for a while. But we got all of the tumor out during the lumpectomy. The re-excision did not show evidence of additional cancer so it seems that all the cancer was removed during the first surgery despite the dirty margins. I’ve gone through radiation which should have killed any microscopic cells remaining in the breast tissue after surgery. I’ve gone through chemotherapy which should have killed any breast cancer cells that traveled elsewhere in my body. Let’s hope all the treatments were effective and all the microscopic cells are gone, gone, gone.
Now I will get a follow-up mammogram before the end of the year and start getting my once-a-year mammograms every April. I will alternate appointments between my breast surgeon and oncologist for the rest of my life and I will pay attention to and report any unusual pain in my head, chest, or bones.
MAMMOGRAMSI have had two women tell me they have gotten mammograms recently because of me. I’m really proud of them for taking care of their health like that. Mammograms are important, especially as we get older. Self exams are also important, and I encourage all women to become familiar with the way their breasts feel so that they will be aware should something feel different.
DEATH AND COMPASSIONThe weeks between chemo and radiation surprised me with the strong emotions and the depth of sadness I felt at that time. Fear of recurrence and fear of metastasis lead of fear of dying sooner rather than later.
Fifteen years ago I lost a dear friend to a sudden car accident. Two years ago I was a passenger in an auto collision that claimed the life of the motorcyclist who hit us. I didn’t need cancer as a wake up call to get me to treat every day as something precious. I already learned that from losing my friend fifteen years ago. I didn’t need cancer to remind me that any of us can go suddenly at any time. I was reminded of that two years ago.
I do not share the gratitude I have heard others express about getting a “second chance” at life. I mean no disrespect to those survivors, but I don’t look at my cancer experience as a wake up call and it certainly wasn’t a gift to me of a second chance.
I’m angry that cancer threatened my life and I’m annoyed that it interrupted my life so dramatically, especially during a time that should have been only joyful with a new baby entering the household. I already lived each day as something to be treasured, so I didn’t need cancer to teach me to pay attention to what’s really important. I already knew I was strong, so I didn’t need cancer to show me what I’m made of.
There are so many life lessons I could have learned from cancer but I had already learned and applied them from past experiences. So I found myself asking what can I take from this cancer experience that is positive?
It’s important to me that I find something positive about all of this mess. More than one person reminded me of the quote probably every cancer survivor hears at some point: That which doesn’t kill us makes us stronger. I didn’t feel a need to be made stronger when I was on the verge of becoming a first-time parent. I knew I was strong and I was pissed that I would have to pull so hard on that reserve of strength to get through this.
What I
have taken as a positive lesson from my cancer experience is an increased depth of compassion.
My great uncle pointed out eloquently that the fuzzy thinking, light headedness, clumsiness, and need to move slowly that I experienced after one of the Taxol treatments is very much what he lives with every day as a man in his seventies.
My husband lives with neuropathy in his fingers every day compliments of injuries to his hand from Vietnam. He and another friend of ours deals with arthritis on a regular basis.
I would never have expected chemo to show me what it can be like to have arthritis, or numb fingertips, or the general effects of old age.
The last time I went to a movie, I found myself exiting the theatre behind a woman using a cane. Because she blocked one side of the aisle and the younger woman helping her blocked the other side, I could not get by them. I had to wait while they slowly made their way down the stairs, and I found myself remembering how slowly I was forced to move when I was struggling with chemo side effects. It gave me patience with waiting for the old woman with the cane, and I entertained myself with thoughts about other things rather than sighing with irritation about not being able to dash to the ladies room right away.
If I thought that somebody was pulling the strings and that cancer was a stop on my journey of life toward some greater purpose, then I would wonder and fear what in my future would need such great compassion that I would have learn it now from breast cancer.
I don’t wonder and fear that I will be called upon to exhibit compassion for some specific important trial up ahead, though. Sometimes bad things happen to good people, and there isn’t necessarily a reason. My friend didn’t die for a reason fifteen years ago from his car accident. It devastated me and his family and his other friends and loved ones. I realized I had a small talent for writing poetry because I wrote poems back then to help me cope with my loss, and those poems meant something to other people who had known my friend and grieved his loss with me. I had lost not only my friend, but my innocence that life (or death) had any sense of fair play. Poetry was one positive thing I could take from the death of a very good person.
I’ll take something positive from cancer because I’ve looked for it and I choose to take it. It’s all I can do. And I’m learning to do it while I wonder if this disease will eventually come back and kill me anyway.
A MID-LIFE CRISIS
That brings me nearly to the present. I’ve decided to seek professional counseling because I don’t wish to remain in the grip of my fears and depression. I’ve had three sessions with a therapist now and it’s helping.
I drove to my most recent session last week with the windows down and the moon roof open in my car. The weather cooperated that day because the temperature was pleasant. We’re moving from the primary season in Texas, hot, to the other season, not so hot. (Most places have four seasons. Austin, Texas really has only two.)
I felt more in touch with the world by rolling down the glass that usually insulates me. When my hair was longer I couldn’t bear to ride in a vehicle with the windows rolled down. My hair would whip into my eyes and sting my skin.
Now it’s so short that I’m lucky to feel the wind in my hair at all, so I’m making the most of it and enjoying some things that I otherwise would not.
As I drove with the wind in my face and my hair most definitely NOT in my eyes (think Mia Farrow and Rosemary’s Baby), I thought about how free it felt to do this and how I could understand middle-aged men buying convertible sports cars. I chuckled to myself as I contemplated how driving around town with the top down seemed like a perfectly sensible thing to do.
Then I told my therapist about questions I asked myself in the weeks between chemo and radiation. One night I had a tearful conversation with my husband and vocalized the questions that began haunting me at the time.
What if I die in the next five years? What goals have I left unfulfilled? Has my life made any difference? Have I done enough?
My therapist told me that most people think of these things when they are middle-aged. I laughed and realized I have been in a mid-life crisis! I’m not sure that she was as amused as I, but it sure felt like an important puzzle piece had just fallen into place.
I forgot to mention in my list of where I have become more compassionate that I sympathize now with women going through menopause. The hot flashes and other symptoms are worse than annoying. I really feel for women having to put up with that uncomfortable period of adjustment that takes years for the body to sort out.
I can remember wanting to cry every time I had a hot flash because I was 35 years old and experiencing menopause. My fertility returned during the radiation days, so my hot flashes have gone away. My cancer was ER and PR negative so I’m not a candidate for Tamoxifen, a drug that has been shown to reduce recurrence of breast cancer in survivors with hormone sensitive tumors. Tamoxifen can cause hot flashes, so I’m grateful to not have to take it for the next five years.
Between a chemo-induced menopause and concerns about mortality that hit most people in their 50s, it’s no small wonder that adjusting to my post-cancer situation has been stressful.
One of the challenges now is trying to balance how to live my life as though I will die in 50 years and at the same time living as though I may die much sooner, like in the next 5 years. If my cancer is going to recur or metastasize, it will probably do it within the next five years.
Really the next three years are the first big test. If I get through them and remain cancer free then it really means something. The five-year mark is the next big test. Then ten years. Then twenty. Breast cancer is sneaky and sometimes waits 20 years to come back. Most breast cancer patients are older than their 30s when first diagnosed so they don’t have good data about breast cancer survival thirty, forty, fifty years after treatment.
It’s not a bad thing, though, to ask myself what goals haven’t been met yet. I’ve thought of one or two and I’m beginning to look around for ways to fulfill those goals instead of counting on “someday” to come around and magically make the goals happen without any effort on my part.
Cancer has made me take a hard look at what is important to me and what is not. I am glad to look back at my life and speculate that if I died tomorrow, I wouldn’t have many regrets over not keeping in touch with friends or telling people how much they mean to me.
GRATITUDE
It has surprised me how strong my “village” is, with the friends and family who stepped forward to show encouragement and support as I went through treatment. My husband was a rock, showing unflagging support and shielding me from the worst of his stress.
It was only last week that it hit me how hard it must have been for him. He came with me to so many appointments, all the surgeries, and all but one of the infusions. I shared all of my thoughts and fear and he held me more than once as I sobbed and wept.
We got through it with our marriage intact and stronger than before. And we learned a new level of team work as we coped with my inability to do as much as I wanted to do to take care of our son. I’m so proud now to be a full part of the baby-caring team and not the mommy who needs as much care as she gives.
I can begin to imagine but not fully appreciate how difficult it must have been for Guy to watch me go through treatment. After all, he could accompany me to everything and hold my hand, but he couldn’t take away my pain. It was my skin that got pierced with the needle every two weeks for chemo. It was my body that was poisoned and developed the long list of side effects that made living miserable.
He could listen to me complain and he could sympathize, but he couldn’t endure the nausea for me. He could encourage me to hang in there, but he couldn’t gather courage for me to get my breast zapped with radiation yet another time when the skin was peeling and stinging.
I had to do all that myself and I know it just killed him to watch. I am so grateful that he remained steadfast as the loving, accepting man he’s always been with me. I’m glad we’re best friends and I could tell him anything all along. I think at times I told him more than he wanted to know, but even then he took it well. I could not have asked for a more wonderful spouse.
We both agree that we have the baby of our dreams. Kelric is beautiful, healthy, and our daily injection of laughter. He smiles and we melt. At six and a half months he is crawling all over the place and beginning to pull himself up.
It is impossible for me to think for long that life is awful when I have this wonderful little cherub at home. Only parts of life have been awful this year. Other parts have been incredible. What an amazing journey…
Angela
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