Saturday, November 21, 2009

It's finally time

I knew this day was coming, but on so many levels I have been able to ignore the inevitability.


If you saw pictures of my gaping flesh at its worst and compared them to today, you would be amazed. The human body is extraordinary. Mind you, I am still disfigured, but so much less so than I could have imagined. And there is more healing to do...scars will fade, indentations will fill out. One would hope in terms of my mastectomy reconstruction that the worst is over.

But this wound closing also means I can start chemo now. The week after Thanksgiving I will begin poisoning my body in order to make sure no stray cancer cells that may or may not be lurking can ever survive to set up housekeeping -- or at least that's the hope, anyway. Today I am a completely healthy woman with a full head of, yes, I'll say it -- pretty darned nice hair. Within about two weeks time that will all change dramatically. I do not know, nor can anyone predict, how physically devastating chemotherapy will be for me.

During the last few weeks there's been a flurry of doctor appointments to various oncologists that I haven't blogged about. There's been some choices to make between two different drug regimens, along with dosages and actual locations for treatment.

I will receive my treatment at the local hospital, the doctor there is as good if not better than any of the rest, trained at Sloan Kettering, etc -- plus it's only about 15 minutes from home (either home, btw).

I have reluctantly chosen the potentially stronger of two different drug regimens, meaning it will take longer and could possibly make me sicker, cause more side effects -- but it has a better proven track record. However there is one drug of the three that I may use the newer version of in hopes that it will leave me with a lessened risk of permanent side effects -- particularly my greatest fear, which is neuropathy.

It has also been suggested that I take the first phase of drugs in shorter rounds, as in every 2 weeks. Although that leaves my body less time to recover between rounds it might have a higher success rate. This is called "dose dense". I haven't decided that one yet. I think I might try it -- I can change my mind at any point and slow down the time between rounds if my understanding is correct. There is a slight chance of heart problems with one of the drugs and I need to know if dose density increases it. Although because I am young it is believed to be a very, very low risk.

The particular chemo regimen I've chosen will take anywhere between 4-6 months, depending on dose density and my individual tolerance. The other regimen would have taken only 3-4 months. In the scheme of life that's not a huge difference in time but in the midst of suffering...well, you get the idea. This was a tough choice.

I swing back and forth between calm, purpose driven multi-tasking and literally laying in bed with the covers pulled up over my head and hiding from even the simplest of requirements. I find my mind tracing mental pathways back to other times I have endured...from the emotionally devastating to the physically dangerous. While former evidence of my apparent ability to overcome adversity gives me comfort, it also terrifies me. Is there a limit? Where is the line between what strengthens or diminishes us?

What will this all look like on the other side, will I even recognize myself? Having come thru some major traumas before I know that I might not. I also know that change wrought by ordeal is a double edged sword that can transform our lives for the better or for the worse. It takes sheer strength of perspective to determine which it will be.

That is what I wish for, what I need now: an unending source of industrial strength perspective.


Brenda said...

Chemo is tough, no two ways about it. I did the dose dense and don't regret it even though I was pretty much ill for the entire 16 weeks, but then it was all over.

I did get neuropathy from the Taxol. I was told it usually only happens to people who have had it before, and I had suffered from it when visiting high in the Andes. It still has not gone away. Bummer for me.

There is a group that will clean house once a month for women undergoing chemo. If you don't know about it and are interested, I can send you the link.

Anonymous said...

Kayleigh - You have been through so much, and so much more to go through still. I think your attitude is amazing. I felt somewhat guilty after having read your latest post. Since I learned of my BRCA1+ status early enough to have preventative surgeries to avoid this thing that you are going through - the guilt I feel is just that I ever spend even a moment feeling sorry for myself for what I am going through... which is clearly so much less traumatizing than your battle. I wish I could do something to lessen the feelings you are dealing with now. :(


~Tessa~Scoffs said...

Thinking of you and thankful for our friendship. Just reading your words and poetry have given me a wider understanding of human life.

Mervat said...

My dear Kayleigh I wish you strength, health, love, positive thoughts and most of all maintenance of your sense of purpose throughout this difficult, emotionally and physically demanding period in your long and beautiful life. As you are going through the height of difficulty, when you want to stay under the covers or run away from everything, please remember that your family needs you, we need you and most importantly you need you. You will get through this and realise what a strong and courageous woman you are. And you will go on to finish that wonderful novel of yours, which will be followed by so many more. Please remember li'l ol' me when you are the next hot shot author to be featured on Oprah!

love, Mervat.

Jean said...

Kayleigh, I'm sending you my warmest wishes and hopes for the strength to see you through this next round of challenges.

And from what I've read about you so far, it'll take determination and resolve to get you through the chemo - and you have that in abundance.

Take care K, there are so many people wishing you well. x

Anonymous said...

Hi Kayleigh,
Sending healing and clarity of perspective vibes your way from the VB. You are thought of often. I hope all the best for you.
Lots of Love,
Jane (@asteadypace)

Ellie said...

Kayleigh, here's another VBoarder stopping by to wish you well. I was thinking about you yesterday morning when I woke up, and then found a thread about your blog. I hope you have a wonderful holiday that fills and sustains you as you start your regimen--and that it goes as well as possible for you, with great good health in the future!

Debby said...

How about this perspective? I did the dose dense. I was okay. It was not fun, and knocked me on my rear for a couple days, but then, I'd get up and get to putzing around and then each day, I'd feel just a little bit better. Everyone is different, so I hesitate to be too glowing, but understand that you may not get sick at all. I didn't. I don't know anyone personally who did. The hair? Oh. That's a hard one. You simply deal with it. There is no alternative.

La Belette Rouge said...

Dear Kayleigh: I am endlessly in awe of you. After reading this I have no words. I can offer no advice. I send love, hugs, prayers, and belief that you will get to the other side of this and that we will all celebrate that day. I hope your Thanksgiving is peaceful and family filled. Much love.xoxo

Anonymous said...

Debby has said all. Everyone is different. It is certainly not fact that you will be ill with the treatment. Yes maybe a day or so mid cycle between treatment.The hair - yes hard , but it does grow again.When I started chemo I expected to be wheeled out in chair to my car to go home. I actually wondered if they had actually given me anything, I felt so "normal". It was not until my hair feel out that I truly believed they had in fact given me something.
Surround yourself with positive people. Have your own hand towel as well as bath towel.Eat plenty fruit and veg. Laugh or cry where and when YOU feel like it.I used to do mine in the shower. Kids etc. don't hear or see it. Loads of things I could tell you. But it is best to deal with things as they happen. Connect with people who are at the same stage as you and then you often find you are experiencing the same things at the same time and can help eash other.Tho I have to say you sound as tho you are doing really well.

Yes life will not be quiet the same, but you will rant and rave at kids again, moan about terriable drivers.

Wishing you every positive and best thought. Off to read the clothes part of your blog which is how I found you. Clothes and what to wear. See somethings nevr change.