Tuesday, June 9, 2009

June 8, 2009

Shoyei and I have just come from seeing Dr. Corn. Yes, we decided she was the best choice to determine if this "lump" is anything. We learned a lot.First of all, she had a hard time finding it and it does seem as if it has shrunk. She explained that the radiation has done a lot of damage to the tissue and even a fat cell would constrict and harden. She thinks that's what I was feeling. She said it would be really hard to punch biopsy it. So we will wait a couple of months and revisit with her to note any changes.It makes sense and is why I have to wait 6 to 9 months before they will do my reconstruction. I am told my muscles will slowly relax and this tightness will become looser. Sounds good to me. I am relieved.

Friday, May 22, 2009

May 22, 2009

Shoyei and I drove to San Diego, a six and a half hour trip, for a few days of R 'n R.
The first time I heard the term R 'n R my college roommate, Hillary, was flying to Hawaii to meet up with her high school sweetheart who was on a government sponsored break from the war in Vietnam. I remember wondering at the time how he would ever be able to go back into the jungle, into the horror. They wrote to each other every day of our freshman year. Once, a week passed with no letter from Michael. Then finally a letter arrived in a Red Cross envelope. Hillary tore into it, and sighed with relief - his wound was not serious. I later met her friend. He had become a heroine addict, a little habit he picked up on the job. I had become a war protester, something I picked up on campus. But I divert.
We begin our trip with a stop at Dr. Kato's office for my monthly blood check. I tell Dr. Kato I have researched Zometa and decided not to take it for now. I had been scheduled for an infusion of Zometa today. It has so many serious side affects and there are questions about the wisdom of "building" bone artificially. If I continue to tolerate the Femara, which I'm scheduled to be on for five years, we will keep an eye on my bones with an annual density test. In the meantime I am studying the best calcium foods and natural supplements. I am learning to eat for healthy cell defense.
The lab tech draws my blood after several minutes of fumbling with a big needle in the wrong vein before switching to a smaller needle in the better vein. It is the most painful blood draw I have had. I whisper to Dr. Kato's nurse on the way out to make a note on my file that she, Carla, will personally draw my blood. I've come to know her touch to be deft and painless. I whisper so as not to hurt the kind, but bumbling technician. I've been grumbling to myself about my port scar which still itches and irritates but now I think back gratefully that I was spared this pain by having it. I take two Ibuprofen and massage my aching arm.
We continue on our journey. Rest and Relaxation. To be refreshed to return to the battles of life. A few days to do what we want or nothing at all is indeed refreshing. We have both been through the battle. I am praying I won't have to return to the jungle and horror of Cancer. My "punch" biopsy is scheduled for June 8th.
The still waters of the marina remind me to "be still and know" that He is God. I once had a vision of myself laying on my belly high on a bluff overlooking a marina. And there I saw a small moored skiff. There was a girl lying on her back on the floor of the boat feeling the gentle rocking of the water. It was me. Aptly named we are sheltered here for a few days from the maelstrom of life.

Saturday, May 16, 2009

May 16, 2009. R 'n R
Shoyei and I drove to San Diego, a six and a half hour trip, for a few days of R 'n R.

The first time I heard the term R 'n R my college roommate, Hillary, was flying to Hawaii to meet up with her high school sweetheart who was on a government sponsored break from the war in Vietnam. I remember wondering at the time how he would ever be able to go back into the jungle, into the horror. They wrote to each other every day of our freshman year. Once, a week passed with no letter from Michael. Then finally a letter arrived in a Red Cross envelope. Hillary tore into it, and sighed with relief - his wound was not serious. I later met her friend. He had become a heroine addict, a little habit he picked up on the job. I had become a war protester, something I picked up on campus. But I divert.

We begin our trip with a stop at Dr. Kato's office for my monthly blood check. I tell Dr. Kato I have researched Zometa and decided not to take it for now. I had been scheduled for an infusion of Zometa today. It has so many serious side affects and there are questions about the wisdom of "building" bone artificially. If I continue to tolerate the Femara, which I'm scheduled to be on for five years, we will keep an eye on my bones with an annual density test. In the meantime I am studying the best calcium foods and natural supplements. I am learning to eat for healthy cell defense.

The lab tech draws my blood after several minutes of fumbling with a big needle in the wrong vein before switching to a smaller needle in the better vein. It is the most painful blood draw I have had. I whisper to Dr. Kato's nurse on the way out to make a note on my file that she, Carla, will personally draw my blood. I've come to know her touch to be deft and painless. I whisper so as not to hurt the kind, but bumbling technician. I've been grumbling to myself about my port scar which still itches and irritates but now I think back gratefully that I was spared this pain by having it. I take two Ibuprofen
and massage my aching arm.

We continue on our journey. Rest and Relaxation. To be refreshed to return to the battles of life. A few days to do what we want or nothing at all is indeed refreshing. We have both been through the battle. I am praying I won't have to return to the jungle and horror of Cancer. My "punch" biopsy is scheduled for June 8th.

The still waters of the marina remind me to "be still and know" that He is God. I once had a vision of myself laying on my belly high on a bluff overlooking a marina. And there I saw a small moored skiff. There was a girl lying on her back on the floor of the boat feeling the gentle rocking of the water. It was me. Aptly named we are sheltered here for a few days from the maelstrom of life:

Monday, May 11, 2009

May 7, 2009 The Exam
I called Dr. Kato's office first thing Monday morning and they told me to come on down - the doctor would want to check out my lump. We jumped in the car and drove the familiar 100 mile trip to his office and were quickly ushered in. I lay on the examining table while Dr. Kato probed the spot in a bouncing-end-of-the-fingers motion. My "lump" is the size of a grain of rice so his examining method seems strange. Can he feel it? He face is unreadable as he says "I'm going to have Dr. Kuske look at this. He's right down the hall." And off he goes to fetch him.
As soon as the door is closed my husband attempts to duplicate Dr. Kato's trampoline style examination and determines he must've missed it. He has me sit up, I humor him by complying. His finger goes to the ballpoint "X". "It's easier to feel when you're sitting up," he says.
"I'd hoped he would say, 'oh that's nothing, just a little fatty necrosis'," I say to my husband. I read about such things in my effort to diagnose myself. Just a little bit of fat that died due to a lack of blood supply.
Dr. Kuske enters with Dr. Kato and I realize this is the first time I have seen them together. My team. I have formed a deep affection for them despite their prior missteps. They're human, I've come to understand. My life is literally in their hands. "She's marked it for us," Dr. Kato tells Dr. Kuske proudly. "Very good," says Dr. Kuske drawing out "very" as he feels for the lump. "Is this new?" He asks me in a tone to suggest it shouldn't be there after seven weeks of radiation. I don't say what I'm thinking, that it lies just outside the remaining "tan" line. Did his beams miss it? I know he can see that for himself. "I don't know," I answer, "I haven't really started examining my self yet." He seems stymied. What is it, he's asking himself, his face far more readable than his partner. "We could do a punch biopsy," he says, directing his comment to Dr. Kato. "I've got everything here to do it," he adds a bit proudly. Dr. Kato nods, clearly deferring to Dr. Kuske on this one. I'm certainly not going back to Dr. Corn. "But I'd want to wait a month until you're completely healed from the radiation," he says to us all."I'm not sure I can wait a month," I say, "You don't think I'm healed enough to do it now," I ask? "I'd rather wait," he repeats, "you know there's a one in a thousand chance this is anything," he says looking directly into my eyes. That is what I came to hear I think to myself so I take a deep breath and agree to wait.
"Let's see what happens in a month," he concludes, "and if you still want the biopsy we'll do it then." If I still want the biopsy I wonder to myself. I'm pretty sick of being cut into. But I will research "punch biopsies" on the trusty Google search where I get all my medical information.
As we drive away the words "one in one thousand" comfort me and I determine this is nothing at all. In a month I will be sure of that hope.
May 2, 2009 Chapter 2


There's a new sense of freedom post treatment. I expected to feel paranoia waiting for the cancer to rear its ugly head again. So far I've only felt impatient - waiting to regain my strength. I get dizzy whenever I bend over and I still tire more than I used to. I haven't really thought about cancer since I walked out of the door of the radiation center the last night. I've been back to work full steam and it's felt normal and it's felt wonderful. Until yesterday.I found a new lump. It is tiny like the little lumps I felt before. It is just beneath my skin on the same "breast". I guide my husband's finger to the site. He can feel it too. He made a comment last week which, at the moment, seemed like an omen and sent a shiver through me. He said, "Anyone can make it through a bout of cancer with some sense of grace. The real test comes when the cancer returns." My brother is proof of that. And my friend Cindy. And Gerri. And me? Am I to be re tested? So soon?I will call Dr. Kato on Monday to schedule an appointment. Is it scar tissue? I was going to wait for my scheduled visit to him at the end of the month but we need to know. It's odd that I have no sense of fear this time. I've been here before. It's still fresh. Still familiar. I just didn't expect to be back so soon. Perhaps it's nothing. Isn't that what I told myself last time? Shoyei talked to his doctor about it yesterday who told him he seriously doubted this would be anything so soon(less than two weeks) after treatment. I pray he is right.

Tuesday, April 21, 2009

April 20, 2009, Beginning the End

Monday.I walk back into the oncology waiting room beaming at my husband. "I'm done!" After 10 months, it seems somehow strange to have reached the end of treatment. This long hard journey has come to an end. How different the world looks on this side of the mountain. No doubt I will spend the next 10 months recalling the ups and downs of this path, what I have learned about life, what I have learned about God.

The skin across my chest is bright red and feels sore and tight like the Jamaican sunburn I was promised. We had a lovely week-end, staying once again at a friend's home where our daughter and son-in-law joined us. It was a great time to begin to put this year behind us and look to the future and the myriad of wonderful possibilities of life.

Last Thursday.
I see Dr. Kato for blood work and find out the next step - which little daily pill I will spend the next five years on. He prescribes Femara, an 'aromatase inhibitor' used to prevent the absorption of estrogen by cancer cells. He gives me a one month supply, $300 worth. He has seemed overworked and distracted the last few visits. He says my blood work is perfect and dismissively tells me to come back in a month. I don't leave so easily. I have a question. I ask if he recommends anything to deal with the bone loss caused by Femara such as an infusion like Boniva(the one Sally Fields advertises). He nods his head and says "Yes, that's a good idea." When I see him next month he'll give me Zometa by IV.

"Sure glad I came up with that idea," I say to Shoyei as we drive away. I've heard I have to be my "own advocate" but my own doctor too? It depresses me to lose confidence in Dr. Kato. On the way home I wonder aloud why he hasn't recommended a bone density test before I get started. I determine to find out tomorrow.

Friday

I call Dr. Kato's office. "I was just wondering if Dr. Kato thinks I should have a bone density test before I start on the Femara?" I ask his receptionist. She checks and calls me back, he said: Yes, I should have a bone density test, he'll have someone call me to schedule it. Wow! I'm full of good ideas and I barely got Cs in science! I am feeling very unprotected by my doctor.

Later that day I see Dr. Kuske for my last weekly check-up to see how I am faring with the burn and fatigue and all. My husband joins us. Dr. Kuske spends our entire visit on his Blackberry. He says he's waiting for a call from a doctor but then gets a text from a different doctor. Dr. Kato is "asking whether I can see a patient at 6:15! On Friday night! We have theater tickets!" he states in mock outrage. We nod our heads in sympathy at this unrealistic request. I glance at my husband's bemused expression watching the doctor as his thumbs fly over the keyboard in response. He absently asks how my skin is doing and as I answer he is staring at his vibrating PDA and reading another message. "Oh good. It can wait til Monday." He holds up the screen waiving it for my husband and me to read like show and tell in front of a class of grade school children. He then returns to his texting and, with eyes on his thumb work, tells me what I can expect as far as my skin healing. We leave feeling udderly neglected, pun intended. Totally let down by the experts.

We take the week-end to get over it and don't even speak of it until the next night when our collective shock is wearing off and the retelling of it solidifies our right to be outraged. Our mission is clear. We will become expert advocates. I wonder sadly about those who are too ill or too frail to be advocates for themselves.

So it is over. The biopsy- the port implant- the chemo - the burned hands - the mastectomy - more chemo - Neulasta - bone pain -expander rejection - port removal and radiation. It is all over. The calls of concern, the prayers for healing, the doting care of my husband, the meals, the cards, the flowers and gifts, the host of new friends - these are over too but they are the vestiges of cancer I will cherish. That is why, when asked about my journey, I get a wistful smile and think on how loved and cared for I have felt by my wealth of friends and family. I am glad I walked this path. Even when I was alone, I was never "alone". Even when it was hard, it was never more than I could bear for others bore it with me.

Now I face the trial of not fixating on every ache and pain and wondering if it's back. Yet I know that even if it comes back, it will be less frightening. So many women have touched my life over these many weeks. It's amazing what two women can share in ten minutes. We exchange emails, each of us a bit desperate for more time to share, making ten-minute friends as we sit knee to knee, braless and gowned. The last new friend I make is Gerri, a beautiful woman with clear blue eyes and thick white hair which she wears in a graceful pageboy. She is on her second bout of breast cancer. Her sweetness and peace inspire me. We speak fast and excitedly sharing our lives, knowing the time is brief between patients. We share our love for Jesus and rejoice for each other. We squeeze hands and hug as if we've known each other all our lives. It's a fitting end to my experience and I leave the same way I entered, smiling, with joy in my heart, with peace in my soul. A new beginning.

Friday, April 17, 2009

April 9, 2009 Only My Hairdresser knows

My hair is white. My post chemotherapy hair is white like snow. It is two inches long, soft and curly. I am shocked by its absolute whiteness, like the woolly head of God I think. It looks like I sudsed up a lather of shampoo and piled it on top of my head, a kid in a tub. I wonder how it would look grown to my preferred length. Should I leave it white?
A few years ago a friend of mine showed up with a great new haircut. When pressed, she admitted it was a wig. "No way," I said. "I want one!" She went with me to try on wigs. One looked too young. The other too old, the other too floozyish. I'd almost given up hope until I tried the "right" one. It was great! On the occasional bad hair day or vacationing at the beach, my wig was the perfect answer. I liked it so much I took it to my hairdresser to copy so eventually you couldn't tell whether I was wearing a wig or not. When chemo finally took my hair, I was ready and my public none-the-wiser.
There is a vast difference between wearing a wig to cover a bad hair day and wearing one to cover up baldness or strangely colored regrowth. The first being optional. Wig-wearing soon grows old and I like nothing better than arriving home at the end of the day and tossing my wig on the bed. My husband says he doesn't mind but sometimes I leave it on through dinner to let him see me as his old PRE-cancer girl.
He makes jokes but I can't help but wonder what it's really like for him to have this little flat mangle-chested woman running around imposing as his wife. He must miss the old girl. I do.
"I'm too young for white hair," I tell my daughter. "You're 58!" She replies as if to say "who-are-you-kidding"? I remember her favorite nursery poem by the slightly deranged Lewis Carrol:
You are old Father William, I said to the man, and have grown most incredibly fat. Yet you did a back somersault in at the door. Tell me what was the meaning of that?
I don't feel like a senior citizen quite yet. That clinches it! Redken, here I come.