Tracie Fights Back

Archive for October, 2010

Today I carved chemo pumpkin, complete with my old and ineffective “anti-nausea” meds.

I’ve had a few days to ponder my current state of breastlessness. It’s not nearly long enough.

I know it’s not the worst thing that ever happened to someone, but it is the worst thing that has happened to me.

I have stared at my wounds only once – the day I got home from having my tubes and corset removed. I stood in front of the full-length mirror in our bedroom and pondered the road that has led me to this having this gnarly, concaved chest. Not even breastless, but less than breastless.

I couldn’t sleep that night.

Now I try to catch only glimpses as I change clothes so that I can adjust to the new me more slowly.

Sometimes I feel a stab of pain and grab the place where I felt it coming from. The placed where my right breast had been. Phantom pain is real – and it hurts.

The bilateral mastectomy awakened me to the reality that until now, I have stumbled along in my chemo stupor thinking that I might wake up one day and my nightmare would be over. It was all a bad dream – all of the nausea and worry, the ER visits and hospital stays, and especially the breast cancer diagnosis.

The gaping wounds on my chest held together with steri-strips are now my harsh reality.

It wasn’t a dream. There is no going back.

We’re leaving Stanford so I’ll post this quickly. My tubes and corset are out; my new flat chest revealed. With shirt it’s not so bad. Without? Well, it will take some getting used to. More tomorrow.
But first… My surgeon said the news of the biopsy is good. Cancer dead in my breast! The lymphs are a little more iffy. Evidence it had moved to the first, which we knew. The other six he took were clear. Dr Carlson my oncologist will tell us what that means on Tuesday. What we do know for sure now is that the treatment worked.
Meanwhile I am so happy to be free of my four drainage tubes that I hardly even notice my chest.
Or as mom said after the visit, “Hallelulia.”

Yesterday I was walking with Michelle, the bulbs and tubes draining my wounds bouncing against my hips, when I said aloud the words so many of you have said to me.

“You know, I’ve been through a lot.”

It was one of those moments when you utter something so obvious, some deep-down truth you’ve never said aloud before, that you instantly become overwhelmed with emotion. Before the last word crossed my lips my heart seemed to seize up as a lump formed in my throat. I started crying.

Spoken aloud, my ordeal instantly became very real. Chemo was one phase, but having one’s breasts removed is a forever reminder that cancer is a killer and fighting it requires an arsenal.

When the radiologist who read my initial ultrasound told me in May my life was about to change completely, she wasn’t kidding.

Today nothing is the same. Not with me, and not with Michelle, who has been there every step. I think her job was harder. I would rather suffer myself than watch someone I love suffer.

We will never take good health for granted. We will never assume that expressions of love can wait until another day.

All we have for sure is this moment.

After walking in a chemo stupor through the valley of the shadow of death nothing will seem as bad as it might have seemed before.

Finding balance in life is about perspective.

Now I have some. And it is this: I’ve been through a lot.

And life for all of us will never be quite the same again.

I’m trying to type this with sausage-like fingers. Apparently swelling is a byproduct of a bilateral mastectomy. My arms and hands are fat, but not with lymphodemia. Just routine fluid retention.

We got home last night at about 8:30. When the folks at Stanford said I had progressed enough by 3 p.m. to be discharged, we were ready to go.

It’s weird how hospitals aren’t quite set up to deal with what ails me. From last time when I was in the throes of chemo and sensitive to smell yet housed with people with colon problems, to this time when moving caused excruciating pain and they couldn’t figure out how to turn off the bed that constantly adjusts its air mattress to prevent bed sores. I’m sure I was not a bed sore candidate in a 23-hour hospital stay. And yet, the damned bed kept inflating and deflating, forcing me to reach for the diladid button. The worst was the air cushion behind my back that, when it filled, caused my chest to thrust out. I demanded a different bed after that one inflated.

Last night I slept sitting up in my own bed, which was great, and was able to get by with just half a tablet of percocet. I haven’t taken anything since. I slept propped up with pillows and with one of those neck pillows one uses on airplanes supporting my head. I actually slept well.

My chest is bound with a mauve-colored corset holding my chest bandages in place. It also immobilizes the four drainage tubes that help reduce swelling.

I thought the bandages would make it more difficult to tell that something is missing. But I can tell. I’m definitely flat-chested where my breasts once were. I cry occasionally, but I think it’s in frustration. I’m frustrated that breast cancer somehow escaped me until it got to the point where I had to go through all of this. And I’m not done yet.

But for now I will wait for the physical pain to subside and the draining to stop. I go back on the 28th to find out the result of the tests on the six lymph nodes Dr. Dirbas took from my armpit and upper arm. Was the cancer there, too? How far had it traveled? What does it mean?

Until then I will focus on the positive. My cancerous breast is gone. The lymph nodes, too. Perhaps those are the only places the cancer had traveled.

So maybe, after all of this, today I am cancer free!

I had a long night trying to regulate my pain meds but today is better. I’m off the IV diladid and on oral percocet. Michelle just helped me put on my own jammies. I got out of bed for the first tine and shuffled down the hall. With each step the pain subsided a little bit. I just couldn’t go very far because of the lightheadedness.
They have me bound with an elastic corset. Underneath are the bandages. The corset helps ease pain too. I also have four drains.
This is what writing on percocet looks like.
Love to all of you. Thanks for the emails and posts.

Tracie will try to update this Thursday. She sends her love.

Today I’m saying goodbye to the girls with trepidation.

I want to forgive the right breast for trying to kill me and putting me through this hell on earth, but I can’t. And yet … it looks so normal now that my tumors have shrunk, harmless even.

But it’s a ruse, I know. I’m told by my surgeon that while the tumor is small, the field the tumor once occupied could still have stray cancer cells in it. So off with it. The other, too, for good measure.

Of course I’ve had many good cries over my pending loss. It would be odd not too. We’ve a lot of history together. The embarrassing first bra purchase with mom at K-Mart; the first trip to second base; the time I wanted cleavage and purchased a Wonder Bra; water skiing topless on the Catawba; all of the painful mammograms I’ve endured since age 40 trying to keep them….

I’ve known this time was coming since May 3, 2010, my diagnosis day. Yet then it seemed like a long way off, made even longer by the grueling chemo. Now it’s here.

Today we took photos. I’m not sure why. I doubt I’ll post them here. I can’t think of a reason to ever show them to anyone.

But maybe, just maybe, one day I’ll want to look back and see what I looked like before Frankenstein-like scars crossed my chest. What I looked like before cancer changed my life so completely.

Tomorrow Michelle and I head to Stanford. I’m due at the surgical center at 6 a.m. Wednesday. Surgery is scheduled for 7:30 a.m. It should take several hours.

When I feel up to it I’ll let you know how it went, physically and emotionally.

Meanwhile, thanks for checking in on me. Every week there are more and more of you wanting to understand what it’s like to go through breast cancer treatment. Last week you were from all over North America plus Slovakia, South Korea, Thailand, Germany, Australia, Chile, Mexico, Madagascar, Russia, Sri Lanka, and the UK.

Breast cancer knows no borders. It strikes despite family history. It can take hold even in those who have maintained healthy lifestyles.

It can afflict even those who once seemed invincible.

Get checked.

Less than a week from now I will be without my breasts – the one that tried to kill me, and the one that is guilty only by association.

How does that make me feel, people ask? More importantly, I ask myself, how will I feel when the time actually arrives next Wednesday morning? Because I don’t know for sure, Michelle and I want to be alone at the hospital to sort out our feelings.

So far I feel pretty matter-of-fact about the pending double. I’ve thought about it a lot and know it’s one more thing I need to do to live. I don’t want to minimize it or whatever feelings I might have, but neither do I want to make it a bigger ordeal than it needs to be.

One has to go. The other is my choice. I fear breast cancer, for sure. But there is also something comforting in symmetry and in not having a single breast left to worry about and subject to annual mammograms.

The operation will be painful. In addition to the breasts I’ll loose some lymph nodes in my right arm. They’ll go through the incision in my chest to reach them. My surgeon tells me that wound will hurt the most.

For two weeks I can’t do much, but in six I should be healed. Somewhere in between I’ll start radiation.

When I start to worry about my pending loss, something arises to grant me perspective.

This week when I was in pre-op waiting to have my port fixed, I was in a bed near a man who had only half a face. I was reminded again that cancer is hideous and indiscriminate.

Losing breasts seems easier by comparison. It’s a decision I can LIVE with.

Tuesday at Stanford was not what I expected, but in the end it all turned out good, and even better than good. A day that started with me fretting needlessly ended many hours later with me learning I have better odds than previously thought for my long-term survival!!

First I had my appointment to fix my port in Interventional Radiology, which you might recall was a disaster last May when doctors both misled me and botched what should have been a simple procedure.

But yesterday I met Dr. William Kuo and his team, who more than made up for my previous bad experience. The original plan was to fix the old port by threading a wire through a vein in my groin to my heart, then pulling the drug-delivering tube connected to my port to back into place. Dr. Kuo said he was afraid it could slip out of place again (leading me to believe the tube wasn’t long enough in the first place).

His solution was to cut me open again and install a new port and tube, which was the last thing I wanted to do. But with nurse Ryan holding my hand, he explained that they could thread the tube along the same route as the original one, up through a vein in my neck and down to my heart. I had no choice, really, since I need the port to have Herceptin, a drug that can cure me, infused every three weeks for the next year. I agreed.

I was wheeled into the operating room and given some cocktail of drugs that didn’t make me unconscious, but I did go to sleep. However I could answer if they asked me a question.

With the first port I suffered unbearable pain and, because of the tube in my neck, couldn’t turn my head for nearly 7 weeks. Today I feel fine. The incision doesn’t even really hurt very much and I can turn my head as if nothing happened. And the nurses in the infusion lab were able to use the port that day without incident to give me my first does of Herception, my key to long-term survival.

Until yesterday I thought it was my only key to survival (besides my lifestyle changes). But my visit with Dr. Mollick, aka Dr. Nice, brought more good news.

All of this time I had thought my type of HER2pos cancer was what is called “non-hormonal receptive,” which means that cancer-slowing drugs that can affect hormone levels would not work for me. The first oncologist with whom Michelle and I met in Fresno gave us that diagnosis and said it was bad news. We wrote it down and our hearts sank.

Well yesterday Dr. Mollick told me I’d be starting soon on Tamoxifen, a drug that interrupts the estrogen hormone. “You’ll take it for 5 years,” he said.

I was elated and confused. I’m a candidate for another drug that can stop my cancer from recurring, but why had I thought otherwise all of these months?

Dr. Mollick called today, after I was less dopy from the surgery, and explained. This is the reason Stanford researchers wanted to do their own tests on my biopsy and slides, which they had me bring from Fresno back in May at the time of my first appointment.

The Stanford tests showed I am 40 percent hormonal positive. It’s obviously not as high as 95 percent, which some women score, but not as bad as 5 percent, the cutoff for receiving Tamoxifen.

As Dr. Mollick explained: “Combined with Herceptin, you now have multiple lines of treatment and each give you a big survival kick. It reduces not only recurrences, but deaths. Your tumor has to figure out multiple ways” to multiply again. “The drug has been widely studied, it’s easy to take and it’s another piece of your armor.”

Thank you Stanford! And thank you researchers who invented Herceptin and Tamoxifen!

It’s overwhelming to think that people devote their lives to helping people like me live ours.