Friday, June 12, 2009

72 My Grandfather Died from Breast Cancer

April 2009

GRANDFATHER LOST

On April 30th my maternal grandfather died. This was my grandfather who was diagnosed with breast cancer in 2006. This was the man who, after having a tumor for 20 years and then receiving a diagnosis of cancer, chose to do nothing for two more years. He chose to believe what the ignorant VA doctor had told him years ago -- that men don't get breast cancer.

In 2008 he finally had the tumor removed. The pathology reports indicated that the cancer had spread - a sharp contrast to the biopsy's pathology report from 2006 which indicated the tumor had not spread yet - and then he opted out of further treatment. He felt that quality of life was more important than quantity. The family respected that decision and didn't give him a hard time about it.

The shame of it was that Grandpa's cancer was mucinous carcinoma, a rare form of breast cancer that grows so slowly that it almost never kills anyone.

We know the cancer metastasized to his lungs. I suspect it was in his liver, too, given his lack of appetite and the way his body wasted away. Since he had no private health insurance and no curiosity about the extent of his disease, he opted out of any kind of scans that would have given us more information about where or how much the cancer had spead.

When his health went downhill in April, the symptoms quickly snowballed. He went from frail but stable health to dependecy upon an oxygen mask within mere weeks. Once in the hospital and on oxygen he remained mentally alert and lucid, though continually exhausted from breathing.

I entered his hospital room on a Wednesday afternoon, not knowing he would be gone in less than 24 hours. I cheerfully said, "Hi!" as I came in, happy to see that my mother and my uncle were there with Grandpa. Grandpa answered, "Hi for the last time." His response shocked me and he smiled.

I was there for several hours. I got to hold his hand and tell him that I loved him. I got to give him one last hug. It was a gift to see him just before he died. I treasure the memories even though it was difficult to see him like that. His feet were horribly swollen, with toenails turning black. His dentures kept falling from the top of his mouth to the bottom, making it difficult to understand him when he talked. But he was the same old Grandpa, bluntly asking, "What do you want?" when hospital personnel entered his room.

My mom and her brother and sister took turns staying with him around the clock, gently adjusting his oxygen mask back in place when it slipped off. My mom ended up caring for him overnight two nights in a row, so she was exhausted when she made The Call to me at 8:30 in the morning just minutes after he passed.

He died on a Thursday. A few days later on Saturday I delivered the eulogy at his funeral - something I'd never done before. I struggled with what to write. I interviewed my mom and took notes. Then I wrote a eulogy that I think honored him without making him sound unrealistically angelic. I think it went well. People smiled in the right places. Nobody said I was weird for calculating exactly how many days he had lived - 30,991.

I retold a story of Grandpa and a group of baby ducks. One of the ducklings ran up to him. He picked it up, then tossed it into the air. The duckling fell. Then it ran to him again. He picked it up again and tossed it into the air. This time it began to fly. Then all the ducklings in the group took turns running to him and he tossed each one into the air. It became a great game that they all enjoyed. That was my favorite memory to recount, even though the memory wasn't my own.

We brought 3-year-old Kelric with us to the funeral. I carried him up to the flag-draped coffin. (Grandpa was a World War II veteran and the flag was a fulfillment of his wishes.) My intention was to help Kelric understand why we would not be visiting his great-grandfather anymore. I thought he might want to say good-bye. Kelric seemed completely disinterested in the body and just wriggled to get down.

Weeks later in a private moment with Daddy, Kelric confessed, "I don't want Mommy to lie down in a box with a flag over it." It broke Guy's heart to hear this, and later broke my heart when Guy told me. There was more to the discussion which I've forgotten, but in essence Kelric realized that I had once been sick, that his great-grandfather had been sick, and since his great-grandfather had just died the little boy was terrified that I would soon die as well.

Kelric is still struggling with the loss of our family dog Wendy from last December. I keep trying to gently explain that Wendy died because she was very old for a dog; that death is part of the circle of life and all living things die one day. Kelric randomly tells us he's very sad and he doesn't want to miss Wendy. Where did Wendy go? Why did she die? Why did her body quit working? And so on... Now he's asking questions about why Grandpa Behne died. I'm worried that the next time I get a cold he'll be terrified for my life because he'll associate "getting sick" with dying.

Kelric noticed my lumpectomy scar recently and asked, "What's this?" I've already forgotten exactly what I told him, but I know it was short yet truthful and didn't lead to more uncomfortable questions. Now that he's three it's time to begin introducing him to this little part of our family history so that he won't learn it one day as a Big Secret Revealed. We need help learning the vocabulary to explain things to him.

I know that Wonders and Worries can help us learn to talk to our young son about serious illnesses and death.

My cancer is long gone. My family has moved on. But it seems that part of moving on means going back and revisiting the past in a language that soothes the fears of a young child. We will do this for his sake, even though it has an emotional cost for us.



FARE THEE WELL
I'm going to close with a reprint of the last two paragraphs from Grandpa's eulogy.

I sat next to his hospital bed three days ago, and adjusted the oxygen mask for him. I held his hand. I looked at him with worry and concern, and he happened to look up in time to see that expression. He was frail and weak. He was struggling to breathe. But when he was awake he was lucid and aware. He saw the look on my face and did something that surprised and delighted me. He tenderly reached up, and brushed my cheek. That single touch conveyed with absolute clarity his message of, “Have peace, child. I love you, too.” He never could have said it. Too many words remained unsaid. But I saw his eyes as he touched my face, and I knew.

Grandpa John Behne, you went softly into that good night just as you wished to go, on your own terms, in your own time. We wish you peace. Accept our honor and respect today, and fly with your little ducks now that sickness and frailty are behind you. Thirty thousand, nine hundred and ninety-one days… I loved you, too.




Next - 73 Public Speaking, Friends Diagnosed
Previous - 71 Yearly Mammogram

Tuesday, June 09, 2009

71 Yearly Mammogram

April 2009


MAMMOGRAM
When it came time for my yearly mammogram I was a mess. My confidence and excitement from becoming a 3-year survivor had dimmed. I could hardly eat anything the morning before the mammogram.

What if my cancer had come back but the tumor was too small to feel yet? What if I only thought I was fine but I was really in trouble? What if I had to go through treatment all over again?

This happens every year. I know that it's normal to experience these doubts and fears, but that doesn't stop me from going through the roller coaster of emotions. To me, a mammogram is a test you can't study for but you could die if you fail it.

The phone call to my husband went something like this:
Me: "Everyone looks fine! There's no cause for concern."
Husband: "Of course. I told you that."
Me: "I know, but I feel better hearing it from the technician. She said the radiologist saw nothing that needed further investigation."
Husband: "Good for you, honey."
Me: "Yeah. Good for me."


I went back to work relieved and all smiles.

The control freak in me came out as I insisted upon taking my films with me when I left the hospital. I proudly carried them to my breast surgeon's office a week later and proudly carried them back home again after that uneventful checkup.

INSURANCE
Part of my fear revolved around money. There are no easy answers for most people when it comes to health insurance and cancer.

Once you've had any form of cancer, your only realistic option is to stick with some kind of group coverage through your employer. What happens if you are a small business owner or a self-employed person with no group plan? That means you end up with no coverage, coverage that excludes anything related to cancer, or high premiums for major medical insurance that almost isn't worth having. When I dealt with cancer-related surgeries and treatments in 2006, the medical expenses were significant even with insurance, not to mention the lost wages for me and my husband from time away from work and my reduced work schedule during chemo.

When I was job hunting earlier this year, the availability and level of health insurance coverage was a potential deal maker/breaker for me. You can't exactly grill most potential employers, however, on the details of their health insurance plan before the first interview - or before an offer.

One decision that cancer survivors face when looking for a job is whether or not to bring up the fact that they have or had cancer. I found it to be better not to say anything during the interview process.

I've been fortunate to have been able to hold onto health insurance in one form or another through my unemployment and subsequent contract employment.


Next - 72 My Grandfather Died From Breast Cancer
Previous - 70 Three-Year Survivor - Whoo-hoo!

Saturday, June 06, 2009

70 Three-Year Survivor - Whoo-hoo!

March 2009

I hit my 3-year anniversary as a survivor in March 2009. It was an exciting day. I thought at first that it would be bittersweet like the 2-year anniversary was. I grew more anxious about it as the day approached. Once it arrived, however, I felt like shouting my joy from the rooftops.

Three years and still counting!!!

As mentioned in earlier posts, my tumor was triple negative. That means it wouldn't respond to a whole range of hormone-based treatments if it recurred, since my tumor wasn't fed by estrogen or progesterone. Also, my tumor was did not show an overabundance of Her-2/neu receptors. That's a good thing, but it also means I don't have Herceptin as a drug that help me in the event of a recurrence.

Being triple negative means I don't have to take Tamoxifen for 5 years after chemo and radiation. It wouldn't do me any good. I'm happy not to have to deal with the unpleasant side effects that can accompany Taxomifen, but sometimes it's unsettling knowing that my only defense is "watchful waiting" and that's not a defense at all. That's a call to arms if something resurfaces.

So imagine my distress when a study was published last year showing that triple negative breast cancer survivors tend to have more aggressive tumors, and recurrences tend to happen within the first three years. (My tumor was as aggressive as you can get, scoring an unfortunate 9 of 9 on the Blooms-Richards scale.) Triple negative breast cancer people tend to have a higher mortality rate than our hormone positive counterparts. Younger women tend to be more likely to get triple negative breast cancer.

Women with hormone positive tumors tend to get recurrences within the first five years. That I made it three years without a recurrence is a really, really big deal. It doesn't necessarily mean that I'll never get a recurrence, but the odds of one happening now are considerably less likely than they were a year ago. Hooray!

So enough for now about the cancer talk.

Another momentous event occured for our family in March 2009. Kelric turned three! We had a birthday party, complete with a cupcake cake made to look like "Frank" from the movie Cars. (Way to go, Central Market!)



We had a red car pinata for the celebration, filled with toys rather than candy. Unfortunately, the weather had turned cold and wet so the planned outing at the park was scrapped and the party was held at home. That didn't bother the birthday boy, but it did pose a problem for Mom and Dad. Where to hang the pinata?

We opted for the old "pinata on a stick" option. That is to say, Dad held put it on the business end of a broom and the kids took turns whacking it.


Unfortunately, the silly thing wouldn't break! The kid-sized broom handle Kelric and Julian were using to hit the pinata started getting all kinds of kinks in it while the pinata itself remained undamaged. Now what? After some deliberation, we decided to encourage jumping. That worked!



The party for the three-year-old was great fun. Later in the month Daddy turned...another year older. Kelric announced that Daddy should have a firetruck birthday cake, so that's what I got. (Thanks again, Central Market!)







Hooray, March 2009!


Next - 71 Yearly Mammogram
Previous - 69 Kay's Memorial Service and Uncle Kenneth's Passing