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Friday, February 27, 2009

Who Am I?

More good news. I have not been nauseated from the new chemotherapy drug I received yesterday. What a relief! I was so hoping that this would be the case. I could not fathom the idea of being sick for 12 weeks with no break in between treatments. Thank you, God!

This evening, I have been reflecting on the last few months. As I looked at my body in the mirror, I thought "my body is a carved up mess now". Two surgeries and three incision scars, two of which are quite prominent, hardly any hair on my body. But I am not my breasts. I am not my hair. I am not cancer. I am ME.

I am not the same "ME" that I was before the evening of November 8, 2008. That was the night that I felt the lump in my breast and I KNEW. The next hours, days, and weeks were filled with sheer terror. How does a Mom tell her daughters that she has breast cancer? Two of those precious girls are away at college and had to hear the news over the telephone. What wrenching calls to make, and, I am sure, even more wrenching to receive. Telling our third daughter, only 12 at the time, was just as difficult. Only instead of just hearing the tears, she had to watch them. After explaining to her the diagnosis, Don asked "Ellie, do you know what cancer is?" "Yes. It's the virus that kills people." Oh my goodness. Moms are supposed to protect their babies, not scare them.

The old "ME" had things under control. Life was planned. Had to be -- lots of responsibilities and not enough time in each day. No more control apparently. But there is more time in each day because circumstances require more "no" answers to requests.

As I have journeyed through the trials and tribulations of breast cancer, I have thought more about death than ever before. I have re-examined my faith in the true and everlasting God. I have questioned HIm beyond what I could have imagined. I have experienced triumphs and failures over panic attacks and illness. I have known such true love and support from my amazing family and my dear friends.

No, I am not the same. I am weaker. I am stronger. I am more fearful. I am more courageous. I am scared. I am bold.

But I am not my body. And I am not cancer.

Thursday, February 26, 2009

Chemo on track again...how odd to be excited for poison.

The call came this morning. I had been randomized. Into the third arm of the clinical trial. Good news, because the third arm uses both the proven drug (Herceptin) and the trial drug, lapatanib --Tykerb) in conjunction with Taxol (which is the chemo drug). I'll have 12 weeks of Taxol and Herceptin. Both of these drugs are administered through my port -- another good thing. The fewer injections the better. After the twelve week cycle, there will be a six week "wash out" period with no drugs. After those six weeks, I'll start the daily lapatanib pill and will take that for the remainder of a year. Radiation treatment will be after the 12 weeks of chemo. If all goes "well", I should be done with chemo and radiation by early July. Oh, that seems so very far away.

I was surprised to learn that the nurse from Legacy Oncology Research will come to each of my chemo appointments. Today, she had me fill out the initial "Quality of Life" survey. Some of the questions were difficult to answer, some not so difficult, and some of the questions I refused to answer. There is still personal privacy, and I am not interested in sharing some aspects of my life with cancer with the research team, or with you, for that matter, thank you very much. Now, I realize that you may be reading this and thinking "what??? She is worried about privacy? Has she read her own notes on facebook? She already shares too much information!" Surprise! I am NOT telling you everything. Nor will I begin to. And I am not sorry about keeping some things to myself. I know you're all in a twitter with curiousity. You'll always wonder....

Interesting interaction with Dr. Segal today. He called me before my appointment to tell me about the randomization. When I answered my phone "Drenda Howatt", he said, "Hi, Drenda, this is Jerry". Ok. So we're on a first-name basis now. No more Mrs. Howatt or Dr. Segal. I knew we'd get to be great friends.

Wednesday, February 25, 2009

Perhaps more waiting...

I heard late this afternoon that I am still not "randomized" (is that even a word?) in the clinical trial. FRUSTRATING! I have been assured that the randomization will be done tomorrow morning. That is important because I am scheduled to begin (after two delays) the second phase of chemotherapy tomorrow at noon.

As it stands currently, I have a 50% chance of being able to go ahead with treatment tomorrow. And 50% chance of having to wait, yet again. If I have to wait, it would be for the trial drug to be delivered, and that takes two days. Waiting means that treatment would start on Monday or Tuesday, or so I've been assured. I don't know if participating in the trial is the best thing, the right thing to do. It's a risk. A guess. A gamble, either way. And a lot of stress.

Waiting. Wondering. Questioning.

Sunday, February 22, 2009

Screaming

I still have hair. Some. White. And it was long. 1/4 inch or so. But no more. As I progress through this "cancer thing", I find myself growing stronger, and even more courageous. For I am beginning to not care about convention. As in having hair, or having my bald-ish head covered in public. As a result, I just finished completely "buzzing" my head. Not shaved with a razor, but as close to that as possible. I was more self-conscious with 1/4 inch long hair than I think I will be with hair so short it cannot be measured.

I have pretty much stopped wearing my "hair" (as in wig). And, while having a bald-ish head is COLD, I am beginning to cut back on wearing hats as well. I need to be comfortable enough with my body to be able to take the hat off at any time -- especially during a hot flash. Because hot flashes are HOT. And sweaty. Hmmm. What would be worse, being a bald woman in public, or being a bald woman who has fainted in public?

Friday morning, I had the second echo-cardiogram. And I went without a hat. It was freeing. Even the second glances and stares from strangers -- while a bit difficult at first -- did not bother me enough to put my hat on. I still always travel with an emergency head-covering. Friday, I grew stronger.

Being bald in public is hard. Not the bald part. But the part that screams, without anyone saying a word, to passersby "I have CANCER". THAT is the hard part.

But I do have cancer. And I am bald. So, I'll just continue to live while my body screams. My new normal.

Friday, February 6, 2009

x + 32 = 50

What does "x" equal? The number of days out of the last 50 that I have felt functional, o.k., or close to "normal". As in not terribly nauseated and/or receiving treatment.

For those of you who may struggle with math, the answer is that "x" = 18. 18 out of the last 50 days. I was beginning to feel like a baby - always complaining and crying about how awful I felt. No matter how hard I tried to control them, the tears were (and are) so often present. But when I did the math, I felt better. Because 18 is not very many. Add in to the mix that within those 50 days, we had college girls come and go, prepared for and celebrated Christmas, got through big snow storms, I continued to work two jobs (semi), and lived normal life. In retrospect, I did pretty good, I think.

End of math lesson for today.