Diagnosis: Breast Cancer -- Part V

For background, please read previous portions of my breast cancer journal:

Part I
Part II
Part III
Part IV

October is Breast Cancer Awareness Month

May 25, 2010 - Tuesday

Today I had another MUGA (multigated acquisition) scan. Either I don't remember the first one I had or the one they gave me today was totally different from the one I received earlier in my treatment. (In Part I I discuss MUGA scans, and I had to read the excerpt again to remind myself that what I had previously experienced was the same then as it was today.)

September 23, 2010 - Thursday

The results of the MUGA scan were good. One valve was operating at 60%; the other at 68%, so Herceptin infusions were not adversely affecting my heart and treatment could continue as planned.

When radiation ended several months ago, I continued to receive Herceptin therapy every three weeks. Today I sit in the infusion room, celebrating (if you consider receiving a treatment and being stuck with a needle celebrating) my last day of chemotherapy.

My breast cancer journey began over a year ago when I first discovered a lump that turned out to be cancerous.

Several articles (links are provided at the beginning of this article) detail how I first discovered the lump, what a breast cancer diagnosis entailed, and how surgery, chemotherapy, and radiation affected my life. The support, encouragement, prayers, and comments I have received throughout my breast cancer journey have been overwhelming and they have touched me deeply.

Though readers tell me they consider my breast cancer articles to be helpful, some readers have expressed a desire to read a more emotional account about what it feels like to have breast cancer.

So for them and for anybody else who has been given a breast cancer diagnosis, I will confront my feelings about having breast cancer.

Often, throughout my life, I've asked myself, "What would you do if...", to decide how I would or would not respond to certain situations if they ever arose.

I decided I could handle having cancer, for instance, but I could not handle losing a child or a grandchild to cancer or any other disease or mishap. I could handle losing my home to a tornado or my car to auto theft, but in terms of property, I didn't have much to lose - losing a mobile home or an old car that is in desperate need of repair is not really losing much.

So using the, "when you don't have much, you don't have much to lose," concept, when I found out I had breast cancer, I couldn't help but wonder - if I had to lose a breast, would anybody notice?

Maybe I don't handle crises the way others handle them. I'm not one who "takes charge" when a trauma occurs. When something shocks my system, my brain misfires in a million directions and I am incapable of gathering my thoughts together to form a cohesive sentence, let alone a thought.

My initial reaction to hearing anything disturbing is to first, freeze - my body's way of dealing with shock, I guess - and then to joke about it. Maybe I comes off as being irreverent, but my natural inclination is to find humor in situations that feel uncomfortable to me. So it was no wonder to anybody who knew me and talked to me during the initial stages of breast cancer that I resorted to humor.

A song by Dusty Springfield, who ironically died from breast cancer, popped into my mind. "Left alone with just a memory," became "Left alone with just one mammary," along with dozens of other thoughts that collided at the same time.

The word cancer itself can be frightening, but I honestly wasn't afraid about having cancer. I had found a lump and I convinced myself it was like every other cyst I'd ever had, though I had to admit, even to myself, that it was quite a bit larger than my other cysts.

My May 2009, mammogram was clear. Now it was September 2009, and the lump was the size of a marble. How could something go from nothing to that size in a matter of four months? And if it was cancer, how would I be able to afford to take care of it? I had no money.

All of my daycare kids, with the exception of one, left for various reasons (to go to school, mom decided to stay home, mom got a new job, etc.) so I was left with only $650 a month, nowhere near what I needed to support myself.

Just prior to finding the lump, my son, his wife, and their kids, who at that time, were stationed in San Diego, California, sent me tickets to visit them. Instead of thinking about the lump and what it might represent, I went ahead with my plans. In the two weeks I was with them, the lump had grown to 4 cm wide. I hid my concern. But for something to grow so significantly in such a short period of time was alarming for me.

I sincerely was not afraid for myself, but I was terrified of telling my family and friends. The stress of harboring that kind of secret is difficult to describe. How should I tell them? When should I tell them? Should I tell them at all? Should I wait until I know what the lump is?

Those questions haunted me. I couldn't keep them out of my head. It was just a lump, I kept telling myself. Try not to think about it.

But I had to think about it. My son lived so far away, that because I wouldn't have it checked out until my return, I didn't want my first mention of the word cancer to be told to him over the phone it it turned out that I had breast cancer. I mustered the courage to tell him and his wife about the lump on that visit in September. And because I told them, I had to tell my daughters, too.

But I didn't tell my parents or my sisters. If it turned out I had breast cancer, only then would I tell them. Everybody handles things differently and a couple of my family members would have been unnecessarily traumatized (though relieved) if it turned out I didn't have cancer after I told them I might. I didn't want anybody to worry unnecessarily.

Waiting for the results was like waiting for a baby to be born who was overdue. But when the diagnosis came, my oncologist told me in a very straight-forward manner, over the phone, that I had breast cancer. I was grateful she didn't require me to wait for an appointment to tell me.

I don't remember much about what happened after I heard those words. I do know, though, that when I hung up, I just sat there and thought about what my next step should be.

Everything in the world but my mind stopped spinning, and my mind spun out of control.

Though I hate to admit it now, confronting this part of the journey is the most uncomfortable for me to relate - I actually considered allowing the cancer to run its course, because I had no money and I didn't want to ask my family or friends for financial help. Unaware of just how aggressive my cancer was, I thought I could live the rest of my life without telling anybody about the cancer and without getting treatment for it.

Unlike Jimmy Stewart's character in, "It's a Wonderful Life," I wasn't worth more dead than alive. My financial worth was nothing either way. I couldn't afford to live; I couldn't afford to die. I didn't want to burden my children with expenses related to my death. And I had a difficult time trying to figure out how I would prepare my family for a life without me.

Strange as it sounds, I actually imagined a world without me in it. I felt the sadness my children and grandchildren would feel. I saw my parents, my sisters, and my friends grieving. But I still couldn't bring myself to ask them for money, so I prepared myself for the consequences, concentrating on how I would act. I am not one who hides her feelings well, however. Somebody would have known something was amiss.

My thoughts were consumed with what to do, what to do, what to do. I knew my family and friends would want to help with the finances, but I didn't want to be responsible for all of them losing their homes because of me. The stress of knowing that one decision will impact so many loved ones was too much pressure. I walked around in a fog.

But somewhere through the mist, I decided I wanted to live, and I prayed that some agency somewhere was available to help people like me, people who lived below the poverty level. I called every imaginable organization that came to mind, asking for referrals or suggestions, hoping one of them would offer me hope.

As one who believes in miracles, I shouldn't have been surprised when one appeared. Somebody from the Illinois Breast and Cervical Cancer Program called me to tell me that because of my financial situation, I was eligible to receive financial aid for my medical care. I had gone through them for my initial mammogram.

I can't begin to tell you how relieved I was to know that I wouldn't have to die from this disease just because I couldn't afford to live. But I also couldn't help but wonder how many women (and men) die only from lack of funds.

I had already prepared my kids for the possibility of my having breast cancer. Now it was time to call them. I wanted to present as positive a picture as I possibly could, because I didn't want them to be afraid. And to be honest, I wasn't afraid. I wasn't even a little afraid of having breast cancer. Because I was so completely ignorant about what a breast cancer diagnosis entailed, I wasn't afraid of the treatment I would receive, nor was I afraid of losing a breast. And I never once thought, after I made the decision to get treatment, that I could die from breast cancer.

As a matter of fact, I couldn't understand how anybody could die from breast cancer with all the new treatments available. I thought about Dusty Springfield and Linda McCartney. It had been a decade since they had died from breast cancer. Surely things were better now.

But then Lyn Redgrave died from breast cancer on May 2, 2010, and for the first time since I was diagnosed, I became a little afraid, because I knew the type of cancer I had was aggressive and had a high recurrence rate.

Lyn Redgrave was still alive though, when I met my parents, sisters, and brother-in-law at a restaurant for lunch a year ago. We had been planning the get-together for several months. I waited until the end of the meal to tell them that I had something important to tell them. I asked them to remain positive, I reminded them that it wasn't a death sentence, and I insured them that I intended on beating it. We hugged. I left. And I thought.

I later found out that my family took the information much harder than I did, and, after talking about cancer with other cancer patients, I am convinced that cancer is far more difficult on loved ones than it is on the person who has cancer.

A woman who accompanied her mother to her radiation treatments while I was receiving radiation, told me that nobody in her family knew about her mother's cancer, and that even her own mother, the cancer patient herself, didn't know she had cancer.

We discussed the trauma of knowing about cancer and not knowing what to do with that information. She had kept her secret from her family, because she didn't know how family members would react if they knew her mother was dying from cancer.

I could see the stress on her face. Do you tell or do you keep it a secret? That quandary is probably the hardest question cancer patients or their relatives have to answer.

Telling people I had cancer was one of the hardest parts about having cancer for me too. I didn't want people pitying me, and I didn't want my relationships with them to change. I did, however, want their prayers, because I firmly believed (and believe) that if anything was to put me in remission it would be prayer.

The first six chemotherapy treatments were grueling. The struggle just to get out of bed was so overwhelming that every step I took was difficult. Every time I had a treatment, I was exhausted for a couple of weeks after each one. I felt as if the chemo had put an elephant on my back - even a walk to the bathroom was exhausting.

The surgery itself, the lumpectomy, was tolerable. The lymph node removal, however, was excruciating. I still can't feel anything under my arm. Painkillers helped, but I will probably never again have feeling under my breast or under my arm. I can live with that.

Lymphedema could occur if I forget to wear my compression sleeve on a flight, and another potential problem I can foresee is getting harmed and not being able to feel it. A bee sting, for instance, would endanger me without me ever knowing I had been stung.

Ever since I first found out I had cancer, I have been telling myself that this part of my life is temporary, and yet in the back of my mind, because of the high recurrence rate for this type of cancer, I can't help but wonder if I'll have to go through this all over again.

When the radiation started, 36 treatments in a row, I felt as if I were on autopilot. Every day I drove to the hospital and little by little, I felt my energy deplete again, not nearly as bad as it was during the initial phases of chemo, but enough to send me to bed again and again.

My appointment book is filled with dates and times and doctor's names. Only twice did I miss doctor appointments. The first was because the appointment was made after the hospital had already given me a printout. The second was because when I stress about money, my mind flits about in my head with worry and I forget sometimes, I think, to breathe. I completely forgot to go to one of my chemo treatments.

Thankfully the Mills Breast Cancer Institute, which has been holding my hand throughout this whole ordeal, calls me when I miss an appointment. You won't find a better group of people than the nurses, doctors, and other employees at the Mills Breast Cancer Institute. They made my appointments, explained the procedures, handed me printouts, and made the journey more tolerable.

As far as physical problems are concerned, I have to accept the fact that one of my breasts is permanently deformed, and the scar tissue under my breast and all the way back to an area under my arm is void of feeling. The lump I once had has been replaced with scar tissue - a rock-like consistency of the same size. I can no longer wear a bra, because it cuts into the hard tissue.

Maybe because of my age, I'm not concerned about dying from breast cancer. I sometimes feel as if I've lived a hundred lifetimes in this one life already. I would miss terribly all of the people I love, but I also understand that one day I, like every other person on this planet, will die.

I have been blessed with four children, ten grandchildren, two great-grandchildren, and one great-grandchild on the way.

I feel as if I've been able to cope well with breast cancer because of my age and because of everybody who has helped me get through this part of my life.

Sometimes I wonder if I seem weird to people, because I'm not as concerned about the cancer as others appear to be. I'd like to say that nothing scares me, but that's not true. One thing does. Perhaps, if I didn't have asthma, cancer would have frightened me. But I'm convinced that the reason my cancer doesn't bother me is because my asthma has always terrified me. I'm more afraid of being unable to breathe than I am of anything else.

Even dying doesn't scare me as much as does the process of dying.

To be honest, I am concerned about getting breast cancer again. Because of the aggressive nature of this particular form of breast cancer, and because of its high recurrence rate, I can not consider myself to be in remission until five years from now.

I have already begun to take a drug, Anastrozole (generic form of Arimidex), that has proven to be effective for people with my type of cancer. I will take this medication every day for five years. After five years, if I have no more recurrence of breast cancer, I can consider myself to be in remission. Five years seems like a long time, but I welcome each day because every day I am one day closer to being in remission.

Before I went through this process, I was completely ignorant about what a breast cancer diagnosis entailed. Now that I know what I had to go through, if I ever get this disease again, I will probably opt for a double mastectomy. The process has been long and slow and difficult for my family and friends. I wouldn't want to put them or me through that all over again.

Thank you for accompanying me on my journey through invasive ductal carcinoma (breast cancer). I hope my experience has helped you or a loved one understand some of the terminology and some of the feelings associated with a diagnosis of and treatment for breast cancer. My next update will appear in October, 2015, when I will be (hopefully) in remission.

If you would like to learn more about breast cancer, please visit breastcancer. org, the National Cancer Institute, or the web site of the hospital where I am currently receiving treatment, the Mills Breast Cancer Institute, in Urbana, Illinois.

In memory of all women who have died from breast cancer, including the following, please give yourself monthly breast exams:

Linda McCartney on April 17, 1998
Dusty Springfield on March 2, 1999
Lyn Redgrave on May 2, 2010