Wednesday, January 18, 2006
Weight Watchers Report
Week two, and I lost 1.6 pounds. I'm now down 9 pounds from my start weight - hurrah!
Hope
Today Susan from Boston emailed me to say that radiation isn't a straight line in terms of fatigue - that I might have two tired days followed by a week of energetic ones. This is the best possible news! Thank you, Susan, for giving me back some hope.
Here's a tidbit to make you laugh: Last night, as I went to put on my prescription Biofine cream (which should help with the skin degradation caused by radiation - I use it 3x/day), I noticed a minty smell. Yes, that's right folks, I was rubbing Tom's of Maine spearmint toothpaste all over my radiated chest. ACK! I quickly washed it off and replaced it with the intended product. I'm guessing that Tom's of Maine will not help my skin, but I guess we'll find out.
Today my radiated skin is pink, and I can see the exact outline of the radiated area. I've been at it for a week, and I had heard that at this point in treatment a lot of people have real skin problems, so I feel good about where I'm at. (And I have no idea if it's pink because I rubbed toothpaste on it last night, or because of the radiation. Time will tell!)
Kristina
Here's a tidbit to make you laugh: Last night, as I went to put on my prescription Biofine cream (which should help with the skin degradation caused by radiation - I use it 3x/day), I noticed a minty smell. Yes, that's right folks, I was rubbing Tom's of Maine spearmint toothpaste all over my radiated chest. ACK! I quickly washed it off and replaced it with the intended product. I'm guessing that Tom's of Maine will not help my skin, but I guess we'll find out.
Today my radiated skin is pink, and I can see the exact outline of the radiated area. I've been at it for a week, and I had heard that at this point in treatment a lot of people have real skin problems, so I feel good about where I'm at. (And I have no idea if it's pink because I rubbed toothpaste on it last night, or because of the radiation. Time will tell!)
Kristina
Tuesday, January 17, 2006
Noooooooooooo........
I am tired. **** it. I can't tell if it's the radiation or stress about finances and jobs, but I'm tired. For the past two days I've been a wreck after radiation, and it's taken all the energy I can muster to keep going. There is a PAC meeting for preschool tonight and I can't go (I don't feel too bad about this because I told them I needed to figure out how radiation was going before I could commit) because I'm not up to it - it starts in a 1/2 hour and in a 1/2 hour I will be in bed.
**** it.
**** it.
Sunday, January 15, 2006
Radiation
I have hesitated to write much about radiation because, as I have mentioned, I don't really want to think about it. The radiation itself isn't so bad, but the fact that I am, once again, a Cancer Patient, truly stinks. When do I get to be Kristina, and not Cancer Patient?
But back to radiation:
The routine is very simple. I show up, and walk straight back to the change rooms, where I strip everything from the waist up and put on an oh-so-ugly gown that ties in the front. Then, I wait alongside other similarly clad people (although some people have to take off their pants and put on hospital-style pants instead of a gown, which leads me to speculate who has what type of cancer) for one of the technicians to come and get me.
I have a team of several people who do my radiation. Jude and Luz are there every day, and I like them both - Jude has a sparkle in his eyes and is quick to make a joke, but he's also incredibly kind and gentled; Luz exudes calm and patience and makes me immediately feel cared for - and then there is usually one, sometimes two, other people who work with them. I undo my gown and slip my left arm out of the sleeve, exposing my chest where the breast used to be, and I lie down on the thin "bed" of the radiation machine (I say "bed" in quotes because it's a thin, uncomfortable plank, really, not even as comfortable as a stretcher) with my left arm held above my head. My team surrounds me, and through a combination of moving the machine and moving me (it's my job to lay stone still, and not "help" by moving myself as they move me, because their movements are often only a couple of millimeters and I'm likely to over-correct if I "help") they line me up. I have two small tattoos - one on my breastbone and one under my left arm - that help them line me up, and I also have two stickers with marks on them in the middle of my chest (one of which is clearly visible when I wear a V or scoop neck - it's pretty high up) that they use to align me. Additionally, each day they draw on me with markers, outlining the radiation area. After I'm lined up, they place a sort of cover on the area to be radiated (it has an official name which I've already forgotten, but the techs refer to it as "the waffle" because of it's waffled appearance) that brings the radiation up higher on my skin (do I have this right?).
When I am suitably marked in ink and lined up under the machine, which takes a few minutes as precision is everything, the technicians throw me a kind word and then leave the room. They watch me on video camera, as there are 10 inch thick lead doors between me and them to protect them as I am radiated. (This does not make me feel confident or secure, let me tell you.) The machine begins to hum, and there is a red light mounted on the wall that flashes a warning while I am radiated. The red light seems like a dire warning, like an air raid siren with lights perhaps, and it makes me nervous. I lay there, exposed, red light flashing and radiation machine whirring. Then the techs come in, reposition the waffle and some parts of the machine, and repeat the process two more times, radiating slightly different areas each time. (My breastbone receives radation, but it's only superficial compared to the rest of my chest, for example, so the machine is positioned differently with a special attachment.)
After a few minutes, it's done, and I can lower my aching left arm, jump down off the machine (which I like to do because it's a way of saying "I'm not a sick person! I can get down without help!" but which makes the techs nervous, as if a six inch jump is somehow going to make me hurt myself), re-tie my gown, and walk back through the waiting room to get dressed in the dressing room. I throw my gown in the hamper, grab my purse, and walk back to my car. Done.
Except Fridays, when I also see the doctor (radiation oncologist) to talk about my progress.
As yet, I have no idea if I feel fatigue. If I DO feel fatigue, I fully intend to ignore it as long as possible, but right now I don't think that I do. (And I'm happy in denial, thank you very much.) I do not yet have any signs of redness or pain on my chest, though these are expected eventually. I have a prescription cream that I rub on my chest three times a day, and I am only wearing cotton next to my skin, and no more underwire bras or anything that might rub, in order to keep skin integrity. I've heard plenty of stories and seen some examples of radiated skin, and it's not pretty. Mostly, I don't let myself think about it.
While in radiation, I am not allowed to wear deoderant or shave under my left arm. (So that's what you smelled!) I am also not allowed to take hot baths, or allow particularly hot or cold water next to my skin, and I'm to avoid pools and sunshine (not hard at this time of year) until about a month after treatment (at which point my skin should have healed). The theory is that I'm lucky that I had a mastectomy, because I don't have much sensation (the nerves were all cut) on my left chest where I'm being radiatated, so the burns that will occur shouldn't hurt too much. I certainly hope that's true!
Three treatments down, thirty to go.
Love,
Kristina
But back to radiation:
The routine is very simple. I show up, and walk straight back to the change rooms, where I strip everything from the waist up and put on an oh-so-ugly gown that ties in the front. Then, I wait alongside other similarly clad people (although some people have to take off their pants and put on hospital-style pants instead of a gown, which leads me to speculate who has what type of cancer) for one of the technicians to come and get me.
I have a team of several people who do my radiation. Jude and Luz are there every day, and I like them both - Jude has a sparkle in his eyes and is quick to make a joke, but he's also incredibly kind and gentled; Luz exudes calm and patience and makes me immediately feel cared for - and then there is usually one, sometimes two, other people who work with them. I undo my gown and slip my left arm out of the sleeve, exposing my chest where the breast used to be, and I lie down on the thin "bed" of the radiation machine (I say "bed" in quotes because it's a thin, uncomfortable plank, really, not even as comfortable as a stretcher) with my left arm held above my head. My team surrounds me, and through a combination of moving the machine and moving me (it's my job to lay stone still, and not "help" by moving myself as they move me, because their movements are often only a couple of millimeters and I'm likely to over-correct if I "help") they line me up. I have two small tattoos - one on my breastbone and one under my left arm - that help them line me up, and I also have two stickers with marks on them in the middle of my chest (one of which is clearly visible when I wear a V or scoop neck - it's pretty high up) that they use to align me. Additionally, each day they draw on me with markers, outlining the radiation area. After I'm lined up, they place a sort of cover on the area to be radiated (it has an official name which I've already forgotten, but the techs refer to it as "the waffle" because of it's waffled appearance) that brings the radiation up higher on my skin (do I have this right?).
When I am suitably marked in ink and lined up under the machine, which takes a few minutes as precision is everything, the technicians throw me a kind word and then leave the room. They watch me on video camera, as there are 10 inch thick lead doors between me and them to protect them as I am radiated. (This does not make me feel confident or secure, let me tell you.) The machine begins to hum, and there is a red light mounted on the wall that flashes a warning while I am radiated. The red light seems like a dire warning, like an air raid siren with lights perhaps, and it makes me nervous. I lay there, exposed, red light flashing and radiation machine whirring. Then the techs come in, reposition the waffle and some parts of the machine, and repeat the process two more times, radiating slightly different areas each time. (My breastbone receives radation, but it's only superficial compared to the rest of my chest, for example, so the machine is positioned differently with a special attachment.)
After a few minutes, it's done, and I can lower my aching left arm, jump down off the machine (which I like to do because it's a way of saying "I'm not a sick person! I can get down without help!" but which makes the techs nervous, as if a six inch jump is somehow going to make me hurt myself), re-tie my gown, and walk back through the waiting room to get dressed in the dressing room. I throw my gown in the hamper, grab my purse, and walk back to my car. Done.
Except Fridays, when I also see the doctor (radiation oncologist) to talk about my progress.
As yet, I have no idea if I feel fatigue. If I DO feel fatigue, I fully intend to ignore it as long as possible, but right now I don't think that I do. (And I'm happy in denial, thank you very much.) I do not yet have any signs of redness or pain on my chest, though these are expected eventually. I have a prescription cream that I rub on my chest three times a day, and I am only wearing cotton next to my skin, and no more underwire bras or anything that might rub, in order to keep skin integrity. I've heard plenty of stories and seen some examples of radiated skin, and it's not pretty. Mostly, I don't let myself think about it.
While in radiation, I am not allowed to wear deoderant or shave under my left arm. (So that's what you smelled!) I am also not allowed to take hot baths, or allow particularly hot or cold water next to my skin, and I'm to avoid pools and sunshine (not hard at this time of year) until about a month after treatment (at which point my skin should have healed). The theory is that I'm lucky that I had a mastectomy, because I don't have much sensation (the nerves were all cut) on my left chest where I'm being radiatated, so the burns that will occur shouldn't hurt too much. I certainly hope that's true!
Three treatments down, thirty to go.
Love,
Kristina
Catch up
I am in a constant state of catch up right now. It seems that over the past six months, breast cancer has ruled my life, and with breast cancer as my leader everything else has fallen apart, including my body, my house, my stack of books to read, my return of phone calls and email, and the always-present to do list. After surgery and chemo, I didn't have the heart to face any of these things, and now I'm scrambling to catch up on all seven months worth of life.
I am, of course, bitter and resentful about how much the breast cancer stole from the last seven months of my life. How could it be otherwise? I'm angry about the negative changes in my body (including the fact that I gained 22 pounds over the course of chemo), angry that I haven't had the energy to care for my house, angry that I haven't been able to play at the park with my daughter, angry at how breast cancer impacted my husband. But right now, I just don't have the energy to focus on how angry I am, because I am too busy playing catch up.
Of course, one big thing I'm trying to take care of is catching up with my body's changes and improving upon the situation. I'm thrilled with last week's weight loss of seven pounds, and I have been on track this week, as well. (I don't expect another huge loss this week because it's not reasonable to think that my body can keep up such an unhealthy rate of loss, but I do hope for a slow and steady loss.) Taking control in this way feels fabulous, as I've said, and it's one way to wind back the clock and make things more like they were.
Related to the above, I've also returned to cooking for myself and my family. I really couldnt' have survived without all of the incredible meals that friends and family made me, and I'm eternally grateful for their sustanance and the love with which the meals were made. Of course, though, I am simply grateful to be in a position to take care of myself again. I've been trying out new recipes (this weekend I made chicken with pears and cranberries, and shrimp creole, and both recipes were fabulous) and stocking my fridge again, and this feels like a way of normalizing our lives once again.
I've also been trying to catch up with friends. (If I haven't called you yet, don't worry, I will!) I just didn't have the energy to return the phone calls I received, and now I'm anxious to reconnect with people. This weekend we had the Savas and Gray families over for dinner, and it was great to watch the girls (between the three families we have five girls!) play together and to attempt adult conversation over the din of the girls' playing. It's a change from the past seven months that I was the hostess, and not the guest, and I am appreciative of being able to play that role again.
I've also returned to my role as a preschool mom. I'm a member of the PAC committee, I'm back to attending meetings, and I'm attending classes with Tessa. This is such a mark of normalcy that it makes me want to weep with joy. I'm not the absent cancer mom, I'm present. Hallelujah!
I've also been enjoying time returning to bookclub, spending a weekend downtown with Susan with barely a care in the world (so fun!), shopping with Michele, planning Tessa's birthday, going to the park, having a zillion playdates, and being awake enough to talk to Ryan in the evenings. I'm ready to start trading babysitting with other parents (instead of just using friends and not reciprocating), and to make meals for my friends who are about to have babies.
I've donated a stack of cancer related books to the Swedish library, and one of my wigs and a handful of hats has gone there as well. My bedside table has a book on Positive Discipline for Preschoolers, my latest bookclub book, and a whole stack of New Yorkers that I'm dying to catch up on...and not cancer stuff.
I'm planning more fundraisers for the 3-Day walk, and I'm trying to get walks in where I can (difficult not because of my physical condition, but because we're trying to set a record for most number of days straight of rain).
It's busy, and I love it. I don't take a minute to ask myself if I'm tired, because I don't want to know the answer. I dont want to be tired, not like that, ever again. Maybe if I run fast enough, I can outrun the fatigue of radiation.
Kristina
I am, of course, bitter and resentful about how much the breast cancer stole from the last seven months of my life. How could it be otherwise? I'm angry about the negative changes in my body (including the fact that I gained 22 pounds over the course of chemo), angry that I haven't had the energy to care for my house, angry that I haven't been able to play at the park with my daughter, angry at how breast cancer impacted my husband. But right now, I just don't have the energy to focus on how angry I am, because I am too busy playing catch up.
Of course, one big thing I'm trying to take care of is catching up with my body's changes and improving upon the situation. I'm thrilled with last week's weight loss of seven pounds, and I have been on track this week, as well. (I don't expect another huge loss this week because it's not reasonable to think that my body can keep up such an unhealthy rate of loss, but I do hope for a slow and steady loss.) Taking control in this way feels fabulous, as I've said, and it's one way to wind back the clock and make things more like they were.
Related to the above, I've also returned to cooking for myself and my family. I really couldnt' have survived without all of the incredible meals that friends and family made me, and I'm eternally grateful for their sustanance and the love with which the meals were made. Of course, though, I am simply grateful to be in a position to take care of myself again. I've been trying out new recipes (this weekend I made chicken with pears and cranberries, and shrimp creole, and both recipes were fabulous) and stocking my fridge again, and this feels like a way of normalizing our lives once again.
I've also been trying to catch up with friends. (If I haven't called you yet, don't worry, I will!) I just didn't have the energy to return the phone calls I received, and now I'm anxious to reconnect with people. This weekend we had the Savas and Gray families over for dinner, and it was great to watch the girls (between the three families we have five girls!) play together and to attempt adult conversation over the din of the girls' playing. It's a change from the past seven months that I was the hostess, and not the guest, and I am appreciative of being able to play that role again.
I've also returned to my role as a preschool mom. I'm a member of the PAC committee, I'm back to attending meetings, and I'm attending classes with Tessa. This is such a mark of normalcy that it makes me want to weep with joy. I'm not the absent cancer mom, I'm present. Hallelujah!
I've also been enjoying time returning to bookclub, spending a weekend downtown with Susan with barely a care in the world (so fun!), shopping with Michele, planning Tessa's birthday, going to the park, having a zillion playdates, and being awake enough to talk to Ryan in the evenings. I'm ready to start trading babysitting with other parents (instead of just using friends and not reciprocating), and to make meals for my friends who are about to have babies.
I've donated a stack of cancer related books to the Swedish library, and one of my wigs and a handful of hats has gone there as well. My bedside table has a book on Positive Discipline for Preschoolers, my latest bookclub book, and a whole stack of New Yorkers that I'm dying to catch up on...and not cancer stuff.
I'm planning more fundraisers for the 3-Day walk, and I'm trying to get walks in where I can (difficult not because of my physical condition, but because we're trying to set a record for most number of days straight of rain).
It's busy, and I love it. I don't take a minute to ask myself if I'm tired, because I don't want to know the answer. I dont want to be tired, not like that, ever again. Maybe if I run fast enough, I can outrun the fatigue of radiation.
Kristina
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