Tuesday, August 30, 2011

Phase III - Radiation

So I haven't told you about radiation. I don't like it. Before I started phase III of this adventure, I had the impression that radiation was a piece of cake by comparison to surgery and chemo because it didn't hurt, it didn't make you nauseous, it didn't make you bald, and it didn't mess up the nerves in your hands and feet. But, as it turns out, it's not that much fun.

My chemo experience includes sitting in a chair that looks like something you might test drive at a Brookstone store in the mall, complete with massage functions and heat. The minute I sit down, the staff gently covers me with a heated blanket. Volunteers come round to offer reading materials, snacks and drinks. While I sit enjoying the heated massage, I read an absorbing novel, like Ann Patchett's State of Wonder, for example, which takes me far away to a land without cancer, needles, chemicals, death (well, perhaps I could have picked a better example than a book about human subjects experimentation, but you get the point...).  From an upper floor of the hospital I have a million dollar view of the Boston skyline through clear, enormous windows. Now and then someone comes by to check on me, or to switch the bags of medicine (I no longer think of it as poison - how can I?) It's a little like flying first class. You don't really want to be spending all this time cooped up in an airplane, but if you have to do it, it's nice be treated like a VIP.

By contrast, my radiation appointments are in the basement of the hospital, which has me thinking that the stuff they do in that department is so dangerous they need to keep it underground.  The procedure requires that I strip down to my waist and put on one of those detestable hospital johnnies. I then sit in a waiting room, along with other ladies wearing ugly johnnies. This part of the ordeal brings back terrifying memories of mammograms. When my name is called, I walk into a dark room with a giant, spooky machine that looks like some kind of prehistoric monster. I lie down on a hard table that has a funny bump in it that my butt is supposed to rest against, but always seems to hit in just the wrong place. There are at least four technicians scurrying around the room officiously. One of them removes the johnny from the part of the body that is going to be radiated. They call out numbers to each other, they jerk my body around to line it up properly. They draw little blue marks all over my skin. They talk and move as if they are conducting a complex military maneuver. Then they all scatter from the room, leaving me to take the "heat" alone.

After the technicians are safe and sound in another room, I hear strange noises that alternate between those associated with the moving machine and those of the radiation beams shooting out, I guess. I'm too freaked out to watch what is going on. I lie there with my eyes closed knowing that parts of me are in the line of fire. I worry that the movement of my chest as I breath will result in collateral damage. I try not to breath. I am so oxygen deprived I feel the need to take a really deep breath but don't. I feel like passing out. And then it is over.

If I were to look on the bright side, however, I appreciate that the treatment itself takes only about 15 to 20 minutes most days. And, so far, I have no side effects, although I am told to expect burnt skin and fatigue.

Yesterday, my treatment was cancelled. The radiation machine was broken. Apparently getting your radiation machine fixed is about as easy as getting your refrigerator fixed. All day long the radiation technicians were calling me giving me updates on the repairs, the likelihood of getting replacement parts, the vagaries of the radiation machine repair people's schedule... In the end, they cancelled my appointment for that day.

The machine was still not fixed this morning. The radiation staff seemed stressed.  At 7:00 AM, I got a call from one of the technicians telling me that the machine was still not fixed. I got the impression that it would be super dangerous if I were to miss another day. I started to panic and began thinking that I should look around for another radiation machine that worked. Before I got too far with that strategy, I got a call that the machine was operational, and I should come in.  I sped into town, practically starved for my next dose of radiation. Shoot me up, monster machine.

Saturday, August 27, 2011

Post Chemo Milestones

I have reached a new milestone in my post-chemo recovery. I am back to running 3+ miles most mornings. I have been a "runner" since I was a sophomore in college (a very, very long time ago.) I use quotation marks for this word, "runner," since by an actual runner's standards, I am a walker. Before my diagnosis, I was "running" about 10 minute miles. I am now "running" something close to 12 minute miles. If you were driving by and saw me from the rear, you would see a short, lumpy woman shuffling like a duck in a hurry, while shifting the weight of her upper body in a sort of regular rhythm, thereby creating the illusion of a forward momentum that is faster than a walk, but it isn't.

My route includes one very long, very steep hill. Yesterday was the first day that I completed the "run," including the hill, without slowing to a walk (which might be closer to a crawl?) This feels like progress to me.  Another step back to my old self.

In other news, I shaved my legs! Yes, my friends, chemotherapy is like Nair for the whole body. But it's marching back in force. Even my head has a bit of fur on it.

Almost time to ditch the bandannas, hats, and wigs (which I never wore)...I can hardly wait.

Thursday, August 18, 2011

Rare and precious animals

So one reason that I have not been posting lately is that I've been struggling with computer challenges, and before that I had the privilege to be traveling. I want to share a little of our adventures with you.

In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.

For example, you can lie on the beach and cuddle up to a sea lion...





You can just about trip over a 150 year old, 1000 pound tortoise.



You can peer at the underside of an albatross and see its newborn.



You can hang out with the Christmas Iguanas...



You can eat lunch with sea lions and pelicans...



Please sir, may I have some more?

As a breast cancer patient you can amuse yourself with silly jokes about the blue-footed boobies.


Or the red-footed ones...





Or the multi-colored ones...

Or even the barefooted ones....


You can coo at a fluffy, baby albatross...
















Or take pride in completing a steep hike with your mom...



You can admire the scenery and figure out better ways of disguising your baldness.



You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.


You can boast to your friends about having snorkeled with penguins...if you did...



And occasionally, if you are really lucky, and quiet and savy about approaching the rarest and wildest of the earth's creatures, you can experience exceptional joy and beauty.



Thursday, August 11, 2011

Making it Look Easy

Man! It's been a month since my last post. I have lost all ability to manage my time. It's been a busy month, however, so I hope you'll cut me a little slack. Here is the first in a series of updates. This entry was started about three weeks ago.

On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.

My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I might feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.

The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.

As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle.  He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.

My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.

Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm,  "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.