Today at my Weight Watchers weigh-in I celebrated another 2.6 pound loss (or was it 2.8?)...anyway, I've lost a total of 14.4 pounds. Only 8 pounds until my pre-chemo weight, and then I can start working on the weight that I should have gotten rid of years ago. I am THRILLED with the rate of loss, as I'd promised myself to be happy if I averaged 1 pound a week of loss...but I've lost all 14.4 in four weeks. I can't wait to see what losses February will bring!
Today at radiation my team looked at my chest, and asked me how I was feeling. I told them that I'm working out regularly and walking 3-6 miles several times a week, and that I get tired in the evenings, but that I feel pretty good. They told me that I was a superhero, because usually by the time that people's chests look like mine, they're exhausted. Well, I certainly don't feel like a superhero, but I'll take all the positive reinforcement that I can get.
My chest is now completely red in the radiated area, with one sort of purple-ish area about 2x2 inches. The whole thing is covered with little sores ranging from pinpoint to the size of the head of a pin (all very small, in other words), and it seems that there are more of these each time I look. I keep slathering on the Biafine and hoping for the best. My chest is now officially tender, and I can't snuggle Tessa on that side any more because it hurts (and my lean daughter's too bony...and too wiggly...for a radiated chest hug). I am almost halfway done, having completed 16 of 33 radiation sessions. I have a feeling that, like chemo, the second half is a lot harder than the first, but I'm trying not to focus on that.
Yesterday I scheduled an appointment with Dr. Dawson, the surgeon who performed my first mastectomy, to talk about performing the second mastectomy. Dr. Welk was very convincing that it is advisable to heal from the mastectomy for at least two months before doing reconstruction, and since I want to do reconstruction in October but I don't want to have a mastectomy close to the 3-Day walk, I think I'm looking at doing it SOON. I will discuss with Dr. Dawson having mastectomy number two in March. Of course I dread this - I'm only human, not superhero after all - but I am willing to do what it takes, and having had cancer in one breast I'm not eager to get it in the other, so it will offer peace of mind.
With love,
Kristina
Thursday, February 02, 2006
Tuesday, January 31, 2006
Plastic Surgery: Breast Reconstruction Options
Today, before my usual radiation appointment, I went to meet with a plastic surgeon, Dr. Welk, for a consultation to discuss my reconstruction options. I came away with very different views than when I entered his office, and I have a lot of thinking to do before making any decisions.
It appears that with continued weight loss (which is worth it to me - I think I've dropped another pound or two this week and I'm determined to keep it up) I will not be a candidate for double reconstruction using my own tissue - there simply won't be enough tummy tissue. That means that I will be getting an implant on my right (non-cancer) side. The best kind of implant that I can get would be a procedure that actually uses skin and muscle from my back, referred to as a "lat flap" (I think it's the latimus dorsi muscle - I have to read more about this). This procedure uses some skin from my back, as well as tissue, to wrap the implant, and thus creates a more normal looking breast. The pictures are impressive.
On my left side, where I've already had a mastectomy, I need to do either the lat flap or a TRAM flap. The TRAM flap involves using abdominal skin and tissue, with a muscle to "feed" the flap coming up from the abdomen. Alternately, I could do a lat flap with implant, the same as on the right side, but the doctor thinks that my best results will occur if I do a TRAM on one side and a lat on the other.
I went in all gung-ho about doing the DIEP, which is like a TRAM only doesn't use muscle, but the doctor essentially talked me out of it, and gave me some very compelling reasons why it isn't a superior technique: the results are the same, but the risks are much higher for the DIEP.
The doctor also told me that it is less advisable to do the mastectomy at the time of reconstruction. Damn. He gave statistics about rate of failure that convinced me that it would be best to do the mastectomy, wait two months, and then do the reconstruction on that side. Sigh. All this surgery certainly bums me out.
I will not do any kind of reconstruction until October, as I need to be fit and healthy on the 3-Day walk in August, and then I want to enjoy the beautiful September weather. That's the plan at the moment, anyway.
It's so much to take in. These surgeries are very invasive (though the doctor disagrees with the term "invasive" I say that anything that leaves me covered in scars and moves my muscles around is invasive) - I would end up not only with Frankenbreasts (which certainly would be better than no breasts at all) but also with a foot long (no exaggeration) scar along my belly and another on my back.
Lots to think about.
Kristina
PS Yesterday's radiation was cancelled because all the computers at Swedish were down, so my new end date is Feb. 28. My skin is getting redder, and there are little dots that look like sores all over the radiated area. They're tiny, but they're a sign of things to come, I think.
It appears that with continued weight loss (which is worth it to me - I think I've dropped another pound or two this week and I'm determined to keep it up) I will not be a candidate for double reconstruction using my own tissue - there simply won't be enough tummy tissue. That means that I will be getting an implant on my right (non-cancer) side. The best kind of implant that I can get would be a procedure that actually uses skin and muscle from my back, referred to as a "lat flap" (I think it's the latimus dorsi muscle - I have to read more about this). This procedure uses some skin from my back, as well as tissue, to wrap the implant, and thus creates a more normal looking breast. The pictures are impressive.
On my left side, where I've already had a mastectomy, I need to do either the lat flap or a TRAM flap. The TRAM flap involves using abdominal skin and tissue, with a muscle to "feed" the flap coming up from the abdomen. Alternately, I could do a lat flap with implant, the same as on the right side, but the doctor thinks that my best results will occur if I do a TRAM on one side and a lat on the other.
I went in all gung-ho about doing the DIEP, which is like a TRAM only doesn't use muscle, but the doctor essentially talked me out of it, and gave me some very compelling reasons why it isn't a superior technique: the results are the same, but the risks are much higher for the DIEP.
The doctor also told me that it is less advisable to do the mastectomy at the time of reconstruction. Damn. He gave statistics about rate of failure that convinced me that it would be best to do the mastectomy, wait two months, and then do the reconstruction on that side. Sigh. All this surgery certainly bums me out.
I will not do any kind of reconstruction until October, as I need to be fit and healthy on the 3-Day walk in August, and then I want to enjoy the beautiful September weather. That's the plan at the moment, anyway.
It's so much to take in. These surgeries are very invasive (though the doctor disagrees with the term "invasive" I say that anything that leaves me covered in scars and moves my muscles around is invasive) - I would end up not only with Frankenbreasts (which certainly would be better than no breasts at all) but also with a foot long (no exaggeration) scar along my belly and another on my back.
Lots to think about.
Kristina
PS Yesterday's radiation was cancelled because all the computers at Swedish were down, so my new end date is Feb. 28. My skin is getting redder, and there are little dots that look like sores all over the radiated area. They're tiny, but they're a sign of things to come, I think.
Saturday, January 28, 2006
Breaking Eyelash News
Today, I looked in the mirror, and there, in plain view, were little microscopic eyelashes! HURRAH! Hopefully this is the beginning of something beautiful. I have missed my eyebrows and eyelashes even more than my hair, I think.
In less happy news, my lymphedema is flaring up, and my left index finger is 1.5 times as fat as the index finger on my right hand, and it aches. I did the manual lymphatic massage this morning, and I'll get on that a couple times a day now...I don't want this to get worse, and radiation can exacerbate it.
Love,
Kristina
In less happy news, my lymphedema is flaring up, and my left index finger is 1.5 times as fat as the index finger on my right hand, and it aches. I did the manual lymphatic massage this morning, and I'll get on that a couple times a day now...I don't want this to get worse, and radiation can exacerbate it.
Love,
Kristina
Friday, January 27, 2006
Radiation update
I had another appointment with Dr. Morris today to discuss my radiation plan. My skin is noticeably pink and red and tanned now, and has become sensitive to the touch. As of today, I can no longer wear any sort of bra because the band rubs on my skin. This bums me out because this means that I can't wear a prosthesis, and so all of my clothes fit strangely and in order to disguise the braless breast I need to wear looser clothes than I like to wear, and it's very de-feminizing. I have had enough de-feminizing, but it appears that there is no end in sight. More practically, it also bums me out because it's uncomfortable to work out without a bra - I jogged a bit today and that didn't go well at all!
Dr. Morris has been doing research on healthy BMIs and weight loss and exercise as they relate to cancer patients, and she is VERY happy with all I'm doing to be fit and slim and healthy. She told me that I will probably get some fatigue soon, and that it is best if I push on through and keep exercising and avoid taking naps, as being active will help fight the fatigue. I'm doing all that I can! Today's walk was short (under two miles) because the kids (I walk oftentimes with Michele & Elliott, in addition to pushing Tessa in the stroller) were fussy and because it started hailing...and I just didn't have the commitment to keep going in the hail. Oh well, better luck tomorrow (or Sunday, when I plan to do a 6 mile walk for the first time since starting all this).
I have stayed close to my daily points for Weight Watchers in the past couple of days, and I'm excited by that, too. Tonight I made a ginger-BBQ sauce on broiled salmon, and it was delicious...definately didn't feel like I was on a diet.
Love to all,
Kristina
Dr. Morris has been doing research on healthy BMIs and weight loss and exercise as they relate to cancer patients, and she is VERY happy with all I'm doing to be fit and slim and healthy. She told me that I will probably get some fatigue soon, and that it is best if I push on through and keep exercising and avoid taking naps, as being active will help fight the fatigue. I'm doing all that I can! Today's walk was short (under two miles) because the kids (I walk oftentimes with Michele & Elliott, in addition to pushing Tessa in the stroller) were fussy and because it started hailing...and I just didn't have the commitment to keep going in the hail. Oh well, better luck tomorrow (or Sunday, when I plan to do a 6 mile walk for the first time since starting all this).
I have stayed close to my daily points for Weight Watchers in the past couple of days, and I'm excited by that, too. Tonight I made a ginger-BBQ sauce on broiled salmon, and it was delicious...definately didn't feel like I was on a diet.
Love to all,
Kristina
11.8 pounds lost!
I forgot to update this yesterday (I was too busy going for a walk and attending radiation, oncologist, and Herceptin appointments before having dinner guests) but at my weigh in yesterday I was down a total of 11.8 pounds. Hurrah for me! Weight Watchers works, and I'm so glad. I am being vigilant about staying on track, and I'm delighted that it's paying off.
Kristina
Kristina
Tuesday, January 24, 2006
More hair photos - six weeks post chemo
Wow - I think that my hair is actually growing! I can see a difference from the pictures a couple of weeks ago. Now, if it would only grow down past my shoulders by the weekend....!
This and that
I have been training for the 3-Day Walk, and though my muscles ache it feels great. Last week I walked for 12 miles (three days, four miles per day), which is my best exercise week since treatment started. I have a lot of incentive to walk because I want to be prepared for the 3-Day, because I want to lose weight, and because I want to be a good role model for Tessa, but today I receive this information:
http://www.breastcancer.org/research_diet_072705a.html
...which gives me some great information about reduced rate of recurrance and death for women who exercise 3-5 hours per week. I have chosen very aggressive treatment plans, some of which only reduce my risk of recurrance by a couple of percentage points (radiation is one of these), so even the small drop in risk of recurrance through exercise is substantial. I have a long, long way to go, but I'm working on it and doing my best! (This is a reminder to myself that I should work out tomorrow. I meant to today, but did chores instead. Tomorrow, I walk!)
And in other thoughts...
Tessa has entered the age of three with a vengeance. I've heard from other mothers that three is a difficult age for many kids, and Tessa is proving no exception. We have had some impressive temper tantrums lately - yikes! Fortunately, her sweet moments are sweeter than ever, so that keeps me sane when I'm thinking that I'll lose my mind from the latest tantrum.
Funny moments from Tessa:
- The other day, as we were reading, Tessa asked, "Mommy, why do you slobber on the book?" It took me a moment to realize what on earth she was talking about, until she pointed out that I had licked my finger a bit before turning the page because the pages were stuck. I swear I didn't slobber, but she sure had me laughing.
- As we left Tessa's pony-party, Tessa got very concerned and cried out, "Oh, no! We forgot! We have to go back!" It took us a bit to realize that she thought that she got to KEEP the pony. OOPS! Sorry, kiddo, no backyard ponies for us!
- Auntie Rene' and Uncle Mel gave Tessa some birthday money to go buy herself something. We went to the toy section at Target and picked out two toys, and then we went to the check-out to purchase them. Proudly, Tessa handed the cashier the money, and the cashier bagged the toys and handed us a receipt. As we walked away, Tessa got very upset, and yelled, "I want my money back!" I guess she mostly sees debit cards - which are, indeed, returned - and she was very startled that the lady took her money. This was very amusing until it turned into a full temper tantrum, complete with screaming and stamping of feet. Anyway, the cashier seemed amused...phew!
Tomorrow I am making Dr. Rinn a full dinner and bringing it to her office. She's a busy woman and has two small children, and doesn't get to cook very often (by her own admission). I have really wanted to thank her for her excellent treatment, but it's been hard to know what to get her. Well, I decided that a full dinner was the ticket. I'm making shrimp creole, rice, salad, broccoli, and brownies, and I'm sending them along with a bottle of wine and some fresh bread. It's not much to say "Thank you for helping to save my life," but it's a start. I adore Dr. Rinn and I hope that she understands how her kindness, as well as her professionalism and knowledge, have permanently left their mark on me.
On Thursday I have a number of appointments again - Dr. Rinn follow up (during which I need to ask about the horrible aches I have in my joints, which are likely side effects of Taxol but actually make me dream of pain and keep me up sometimes) and another infusion of Herceptin, in addition to radiation. The Herceptin takes a full hour, which is a pain, but c'est la vie. (Herceptin has been shown to reduce the rate of recurrance for my kind of cancer by 52%. That is mighty impressive, and I'll take it!) I have upcoming appointments to talk to an oncology gynecologist, and a plastic surgeon, and to get fitted for the lymphedema sleeve, as well. I am still Cancer Patient.
I have completed 10 of my 33 radiation appointments. So far, I'm just a bit pink/tanned on that part of my chest. I get tired, but I feel 1000% better than I did during chemo, so I'm not complaining about that yet.
Slowly, I'm trying to return to my normal life. This is a week of birthday parties (mostly for Tessa's PEPS group - the birthdays are all close together) and doing chores around the house. Today I donated another batch of "cancer books" to the Swedish Cancer Institute library, for other patients to use. I want to move on.
I must get to bed. Good night, all!
Kristina
http://www.breastcancer.org/research_diet_072705a.html
...which gives me some great information about reduced rate of recurrance and death for women who exercise 3-5 hours per week. I have chosen very aggressive treatment plans, some of which only reduce my risk of recurrance by a couple of percentage points (radiation is one of these), so even the small drop in risk of recurrance through exercise is substantial. I have a long, long way to go, but I'm working on it and doing my best! (This is a reminder to myself that I should work out tomorrow. I meant to today, but did chores instead. Tomorrow, I walk!)
And in other thoughts...
Tessa has entered the age of three with a vengeance. I've heard from other mothers that three is a difficult age for many kids, and Tessa is proving no exception. We have had some impressive temper tantrums lately - yikes! Fortunately, her sweet moments are sweeter than ever, so that keeps me sane when I'm thinking that I'll lose my mind from the latest tantrum.
Funny moments from Tessa:
- The other day, as we were reading, Tessa asked, "Mommy, why do you slobber on the book?" It took me a moment to realize what on earth she was talking about, until she pointed out that I had licked my finger a bit before turning the page because the pages were stuck. I swear I didn't slobber, but she sure had me laughing.
- As we left Tessa's pony-party, Tessa got very concerned and cried out, "Oh, no! We forgot! We have to go back!" It took us a bit to realize that she thought that she got to KEEP the pony. OOPS! Sorry, kiddo, no backyard ponies for us!
- Auntie Rene' and Uncle Mel gave Tessa some birthday money to go buy herself something. We went to the toy section at Target and picked out two toys, and then we went to the check-out to purchase them. Proudly, Tessa handed the cashier the money, and the cashier bagged the toys and handed us a receipt. As we walked away, Tessa got very upset, and yelled, "I want my money back!" I guess she mostly sees debit cards - which are, indeed, returned - and she was very startled that the lady took her money. This was very amusing until it turned into a full temper tantrum, complete with screaming and stamping of feet. Anyway, the cashier seemed amused...phew!
Tomorrow I am making Dr. Rinn a full dinner and bringing it to her office. She's a busy woman and has two small children, and doesn't get to cook very often (by her own admission). I have really wanted to thank her for her excellent treatment, but it's been hard to know what to get her. Well, I decided that a full dinner was the ticket. I'm making shrimp creole, rice, salad, broccoli, and brownies, and I'm sending them along with a bottle of wine and some fresh bread. It's not much to say "Thank you for helping to save my life," but it's a start. I adore Dr. Rinn and I hope that she understands how her kindness, as well as her professionalism and knowledge, have permanently left their mark on me.
On Thursday I have a number of appointments again - Dr. Rinn follow up (during which I need to ask about the horrible aches I have in my joints, which are likely side effects of Taxol but actually make me dream of pain and keep me up sometimes) and another infusion of Herceptin, in addition to radiation. The Herceptin takes a full hour, which is a pain, but c'est la vie. (Herceptin has been shown to reduce the rate of recurrance for my kind of cancer by 52%. That is mighty impressive, and I'll take it!) I have upcoming appointments to talk to an oncology gynecologist, and a plastic surgeon, and to get fitted for the lymphedema sleeve, as well. I am still Cancer Patient.
I have completed 10 of my 33 radiation appointments. So far, I'm just a bit pink/tanned on that part of my chest. I get tired, but I feel 1000% better than I did during chemo, so I'm not complaining about that yet.
Slowly, I'm trying to return to my normal life. This is a week of birthday parties (mostly for Tessa's PEPS group - the birthdays are all close together) and doing chores around the house. Today I donated another batch of "cancer books" to the Swedish Cancer Institute library, for other patients to use. I want to move on.
I must get to bed. Good night, all!
Kristina
Monday, January 23, 2006
Tessa's 3rd Birthday
Is it possible that I have been a mother for three years? And how is it possible that my tiny baby girl has grown to be such a big girl? I'm more proud of her than I imagined possible - she is all that I ever dreamed of in a child, and I love her more with each passing day.
Here are a few pictures of her third birthday to delight and entertain you. She had a pony party - hurrah! My pony obsessed daughter loved every second of it, and we were blessed to share it with a few close friends. Then, today, we had a small family party hosted by Grammy & Grandpa (thank you!)...I think it was a perfect third birthday.
I love you, Tessa Katherine!
Love,
Kristina
PS 9 radiation down, 24 to go. I hate the way it takes a big chunk of time out of every day, and the way it makes me feel like a cancer patient...but it's okay.
PPS I've been having bad dreams lately, and perhaps they tell me that I am not as confident as I'd like to believe. My first bad dream involved me getting cancer in my legs, and "they" decided to amputate. I was okay with that, but they started sawing off my legs without giving me any anesthetic, and I pleaded with them to stop but they said, "You have a high pain tolerance. You can take it." The second dream was that my blood counts had jumped, and some cancer marker that was supposed to be 2 had jumped to 273. In the dream, I knew that I was dying, and the doctors told me that they were sorry, but there was nothing they could do. Freud could have a heyday with dreams like these.
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
Wednesday, January 11, 2006
Taking control
Today I had my first weekly weigh in at Weight Watchers since I started doing the program. I have lost (drumroll, please) just over seven pounds! Of course, I'm delighted by this loss, though I wish I felt it more...it's a sign of how much I need to lose that seven pounds doesn't immediately make me look slimmer. In any case, I'm thrilled with my first week. I've shown amazing willpower towards food, but more importantly (to me) I am re-learning some eating habits and making better food choices. I'm looking at food on a weekly basis, and planning for "downfall" events like parties where I know there will be high-cal food, and as such I'm planning for success. (I know, for example, that if I want to go out for dinner on Saturday and not worry about what I'm going to order, then I should show restraint in my choices on the days leading up to Saturday, so that I can enjoy my treats on Saturday but not put on weight. This might seem pretty obvious to some people, but it wasn't obvious to me, and it's a huge "aha!" moment for me.)
One thing that I like about the WW plan is that I can still have treats - it's just about making choices. Today I had super healthy food all day, and that means that tonight I am enjoying a glass of wine. Any diet that allows a glass of wine makes sense to me! (I'm also eating more fruits and veggies than ever, however, as they have low points and fill me up if I'm hungry.)
Anyway, I'm taking control of what I can control. I can't make my hair grow, and I can't make treatment easier, but I can control what I eat and make healthy choices. I do not intend to beat breast cancer only to be taken down by heart disease...I intend to be healthy. Period.
All this thinking about food is also a way to avoid thinking about radiation. I completed my first true radiation today (number 2 of 34 appointments...number 1 of 33 treatments). It was fine. The people are nice. It doesn't hurt. I still don't want to do it. There's not much more to say about it than that, I think. I'll report on it later when I'm more in the mood.
Love,
Kristina
One thing that I like about the WW plan is that I can still have treats - it's just about making choices. Today I had super healthy food all day, and that means that tonight I am enjoying a glass of wine. Any diet that allows a glass of wine makes sense to me! (I'm also eating more fruits and veggies than ever, however, as they have low points and fill me up if I'm hungry.)
Anyway, I'm taking control of what I can control. I can't make my hair grow, and I can't make treatment easier, but I can control what I eat and make healthy choices. I do not intend to beat breast cancer only to be taken down by heart disease...I intend to be healthy. Period.
All this thinking about food is also a way to avoid thinking about radiation. I completed my first true radiation today (number 2 of 34 appointments...number 1 of 33 treatments). It was fine. The people are nice. It doesn't hurt. I still don't want to do it. There's not much more to say about it than that, I think. I'll report on it later when I'm more in the mood.
Love,
Kristina
Tuesday, January 10, 2006
Pictures 4 weeks after chemo
Here are two pictures of my "bald" head, taken on Sunday. My duck fuzz is getting thicker and longer, though my scalp is still visible. I've taken to going out sans hat or scarf because I can't be bothered any more, and I have just enough fuzz to keep my head warm when I'm indoors. It's still pretty awful, as hair goes, but it's an improvement.
1 down, 33 to go
Today I showed up for the first of 34 radiation appointments. I have so many thoughts swimming in my head that I can barely sort them all out, but here is a start.
Perhaps some of you will remember that at my first meeting with Dr. Rinn, my oncologist, Ryan and I met a couple in the lobby who were dressed in black, Goth clothing. They were kind to us, and the woman was particularly helpful to me as she told me about chemo and tried to help me to believe that it wasn't going to be as bad as I expected; she truly helped to alleviate some of my fears. Anyway, today I saw her again for the first time. I walked right by, and then thought better of it, turned around, and approached her. I told her that she probably didn't remember me, but that I'd met her on my first day of chemo, and that I was truly grateful to her for helping me so much. She hugged me and told me that she was glad I'd stopped to tell her, and that I made it somehow worthwhile for her that she'd been able to help me. She told me that she'd been having a rough day, and that I had brought a smile to her face.
Here's the thing, though: she looked terrible. Her smile to me was genuine, but the sparkle in her eye was all but gone. Her skin was pale, and her teeth have blackened. She looked like she could barely walk, and like she was in a good deal of pain. When I saw her last July, she had already been in treatment for who-knows-how-long, and she had a bald head; today I had a bit more hair than she did. I can surmise what her definition of a "rough day" is, and the thought of it makes my chest contract and my eyes sting. It looks like the angel I met last July is fighting even more demons. I carry her in my heart and pray that she will win her battle.
I didn't realize until after I saw her just how much anxiety I have had about starting radiation. This morning I did a ton of chores around the house, catching up on things and actually working up a sweat I was doing so much and so quickly (playing with Tessa intermittantly between tasks), and I think that what I was really doing is preparing for another battle...perhaps one in which I won't be up to vacuuming or catching up on laundry or organizing a box of things to be donated. I thought that I was just being productive, but I think that somewhere in my head I am preparing to enter the chemo-like state again. The realization of this makes me sick.
With these thoughts in my head, I felt somewhat emotional as I met my radiation team. Four individuals (Maria, Luce, Jude and...oh no the name has slipped already!) will be performing all of my treatments, and they were very kind. I laid on the machine and they marked me up with even more ink, measuring and aligning the machine to set the coordinates so that the radiation will only hit the intended areas and not damage my heart, lungs, etc. This was the final step before beginning radiation in earnest tomorrow.
After radiation simulation, I went to Starbucks, and treated myself to a pastry. The Weight Watchers thing is going fabulously, and I really feel good, but I quite intentionally buried my anxiety in food. (I have enough points to do this, so it's not even cheating. I get weighed tomorrow and hope to report some weight loss then.)
I do not want to go back in that building every day for the next two months. More than that, though, I don't want to feel sick again. I feel so great right now that the idea that radiation might take away all of my newfound energy is...well, I don't have the right word for it. Disheartening. Terrifying. Painful. I don't want to go back. I know that radiation isn't chemo, and I don't expect the same thing, but as I lay on the radiation table I realized that I've been telling myself that radiation isn't a big deal and that it's just a minor inconvenience and that it's nothing compared to chemo. Well, as I walked through the 10 inch thick lead doors marked "caution" and as four people hovered over me and a giant machine whirred over and around me, moving into position, my left arm held uncomfortably above my head and my left chest (no longer a breast) exposed, I realized that this is real. This is not just "a little extra to make sure," it's deep treatment. And I know how treatment - surgery and chemo - has felt so far, and the idea of more of it is almost too much. Too, too much.
I think that this is the real reason I was so upset on the 28th when I was told that I'd have to wait to start radiation. I have gotten used to feeling good again and I've had time to remember what it means to be "normal", and I appreciate it more than ever before. And now I have to adjust to being a cancer patient again. Don't worry, I am not throwing myself into the pit of dispair and assuming the worst about my treatment (I am still hopeful that I'll feel great) but the truth is that when this is done I will have some, if not many, side effects, and it's not fun.
And then there's that Goth angel. I can wear my pink ribbon polarfleece, and I can roll my eyes at the thought of having stickers on my body for the next couple months, and I can publish a running commentary of my treatment on the internet, and I can do all of these things as a way of saying "I'm stronger than this! I have cancer, but cancer does not have me!" and I will raise money and I will walk 60 miles and I will volunteer....but despite those pretty, optimistic, positive actions, the truth is that this damn disease is ugly. UGLY. That Goth angel inspired such strength and courage when I met her in July, and this stupid disease is stealing so much from her. Today, she terrifies me.
I came home from radiation and sobbed on Ryan's shoulder for a moment. Then I emailed Starbucks to see what the nutritional information for the treat I had is so that I can calculate the points, and then I took Tessa to a playdate (where I had a lovely time). So life goes on. I will not remain a babbling mess, but today I am reminded of the road ahead. Again. I will continue to be optimistic, but every now and then the reality of my fear punches me in the stomach.
Kristina
Perhaps some of you will remember that at my first meeting with Dr. Rinn, my oncologist, Ryan and I met a couple in the lobby who were dressed in black, Goth clothing. They were kind to us, and the woman was particularly helpful to me as she told me about chemo and tried to help me to believe that it wasn't going to be as bad as I expected; she truly helped to alleviate some of my fears. Anyway, today I saw her again for the first time. I walked right by, and then thought better of it, turned around, and approached her. I told her that she probably didn't remember me, but that I'd met her on my first day of chemo, and that I was truly grateful to her for helping me so much. She hugged me and told me that she was glad I'd stopped to tell her, and that I made it somehow worthwhile for her that she'd been able to help me. She told me that she'd been having a rough day, and that I had brought a smile to her face.
Here's the thing, though: she looked terrible. Her smile to me was genuine, but the sparkle in her eye was all but gone. Her skin was pale, and her teeth have blackened. She looked like she could barely walk, and like she was in a good deal of pain. When I saw her last July, she had already been in treatment for who-knows-how-long, and she had a bald head; today I had a bit more hair than she did. I can surmise what her definition of a "rough day" is, and the thought of it makes my chest contract and my eyes sting. It looks like the angel I met last July is fighting even more demons. I carry her in my heart and pray that she will win her battle.
I didn't realize until after I saw her just how much anxiety I have had about starting radiation. This morning I did a ton of chores around the house, catching up on things and actually working up a sweat I was doing so much and so quickly (playing with Tessa intermittantly between tasks), and I think that what I was really doing is preparing for another battle...perhaps one in which I won't be up to vacuuming or catching up on laundry or organizing a box of things to be donated. I thought that I was just being productive, but I think that somewhere in my head I am preparing to enter the chemo-like state again. The realization of this makes me sick.
With these thoughts in my head, I felt somewhat emotional as I met my radiation team. Four individuals (Maria, Luce, Jude and...oh no the name has slipped already!) will be performing all of my treatments, and they were very kind. I laid on the machine and they marked me up with even more ink, measuring and aligning the machine to set the coordinates so that the radiation will only hit the intended areas and not damage my heart, lungs, etc. This was the final step before beginning radiation in earnest tomorrow.
After radiation simulation, I went to Starbucks, and treated myself to a pastry. The Weight Watchers thing is going fabulously, and I really feel good, but I quite intentionally buried my anxiety in food. (I have enough points to do this, so it's not even cheating. I get weighed tomorrow and hope to report some weight loss then.)
I do not want to go back in that building every day for the next two months. More than that, though, I don't want to feel sick again. I feel so great right now that the idea that radiation might take away all of my newfound energy is...well, I don't have the right word for it. Disheartening. Terrifying. Painful. I don't want to go back. I know that radiation isn't chemo, and I don't expect the same thing, but as I lay on the radiation table I realized that I've been telling myself that radiation isn't a big deal and that it's just a minor inconvenience and that it's nothing compared to chemo. Well, as I walked through the 10 inch thick lead doors marked "caution" and as four people hovered over me and a giant machine whirred over and around me, moving into position, my left arm held uncomfortably above my head and my left chest (no longer a breast) exposed, I realized that this is real. This is not just "a little extra to make sure," it's deep treatment. And I know how treatment - surgery and chemo - has felt so far, and the idea of more of it is almost too much. Too, too much.
I think that this is the real reason I was so upset on the 28th when I was told that I'd have to wait to start radiation. I have gotten used to feeling good again and I've had time to remember what it means to be "normal", and I appreciate it more than ever before. And now I have to adjust to being a cancer patient again. Don't worry, I am not throwing myself into the pit of dispair and assuming the worst about my treatment (I am still hopeful that I'll feel great) but the truth is that when this is done I will have some, if not many, side effects, and it's not fun.
And then there's that Goth angel. I can wear my pink ribbon polarfleece, and I can roll my eyes at the thought of having stickers on my body for the next couple months, and I can publish a running commentary of my treatment on the internet, and I can do all of these things as a way of saying "I'm stronger than this! I have cancer, but cancer does not have me!" and I will raise money and I will walk 60 miles and I will volunteer....but despite those pretty, optimistic, positive actions, the truth is that this damn disease is ugly. UGLY. That Goth angel inspired such strength and courage when I met her in July, and this stupid disease is stealing so much from her. Today, she terrifies me.
I came home from radiation and sobbed on Ryan's shoulder for a moment. Then I emailed Starbucks to see what the nutritional information for the treat I had is so that I can calculate the points, and then I took Tessa to a playdate (where I had a lovely time). So life goes on. I will not remain a babbling mess, but today I am reminded of the road ahead. Again. I will continue to be optimistic, but every now and then the reality of my fear punches me in the stomach.
Kristina
Friday, January 06, 2006
Moving forward
Hello, friends. I haven't been updating much because (drumroll please) I've been out living my life and haven't had a chance to sit down. HURRAH! I feel somewhat human and up to most tasks, and I appreciate it like never before.
Yesterday I had a series of appointments and tests. Good news: my heart function (MUGA test) hasn't been impacted by all these toxic drugs, and I still test on the high end of normal. Hopeful for good news: I had another cat scan to check out the nodules in my lungs, and it looks like there hasn't been any change (which would confirm the suspicion that the nodules are scar tissue, not cancer); I should hear the final analysis in the next couple of days. More good news: my blood counts now test in the normal range! My doctor was amazed that I have recovered so quickly since chemo... and I'm amazed as well.
I am off and running and trying to get my life in order now that chemo is over - it's a new year for me in more ways than just the calendar change. To re-take control, I've signed up for Weight Watchers, and I'm very happy with that decision. It doesn't feel limiting to me at this (very early) stage, because I am just so hopeful that I can feel 100% healthy that the "sacrifice" of eating less, and eating more healthy foods, doesn't feel like a sacrifice at all, it feels like a gift to myself. I've done a couple training walks for the Breast Cancer 3-Day, and overall, my physical self feels fantastic compared to a mere three weeks ago. Really, I feel like a new woman.
And now I must run to co-op preschool with Tessa...more later!
Love,
Kristina
Yesterday I had a series of appointments and tests. Good news: my heart function (MUGA test) hasn't been impacted by all these toxic drugs, and I still test on the high end of normal. Hopeful for good news: I had another cat scan to check out the nodules in my lungs, and it looks like there hasn't been any change (which would confirm the suspicion that the nodules are scar tissue, not cancer); I should hear the final analysis in the next couple of days. More good news: my blood counts now test in the normal range! My doctor was amazed that I have recovered so quickly since chemo... and I'm amazed as well.
I am off and running and trying to get my life in order now that chemo is over - it's a new year for me in more ways than just the calendar change. To re-take control, I've signed up for Weight Watchers, and I'm very happy with that decision. It doesn't feel limiting to me at this (very early) stage, because I am just so hopeful that I can feel 100% healthy that the "sacrifice" of eating less, and eating more healthy foods, doesn't feel like a sacrifice at all, it feels like a gift to myself. I've done a couple training walks for the Breast Cancer 3-Day, and overall, my physical self feels fantastic compared to a mere three weeks ago. Really, I feel like a new woman.
And now I must run to co-op preschool with Tessa...more later!
Love,
Kristina
Tuesday, January 03, 2006
Off to the spa!
In a few minutes I'm leaving for The Salish to experience a day/night of pampering. Ryan got me a lovely package that includes an overnight and spa treatments, and I can't wait. My parents are watching Tessa (thanks, Mom & Dad) and Ryan will join me later in the evening...hurrah! (Thank you, Ryan, for your loving gift.)
Today is my brother's 30th birthday. I can not believe that my "kid" brother is now in his thirties, as somewhere in my head he's still about twelve years old. However, despite my twisted sense of time, Mike has indeed grown to be a kind, generous man and a devoted husband and father...and he is, indeed, thirty. Happy birthday, Mike. You'll always be "the kid" to me, but I certainly respect the person that you have become.
I have so much to blog that I haven't made time for - Christmas, New Year's, and the day to day, as well as my thoughts as I recover from chemo. These things will have to wait another day, however...and I'm off to the spa!
Love,
K
Today is my brother's 30th birthday. I can not believe that my "kid" brother is now in his thirties, as somewhere in my head he's still about twelve years old. However, despite my twisted sense of time, Mike has indeed grown to be a kind, generous man and a devoted husband and father...and he is, indeed, thirty. Happy birthday, Mike. You'll always be "the kid" to me, but I certainly respect the person that you have become.
I have so much to blog that I haven't made time for - Christmas, New Year's, and the day to day, as well as my thoughts as I recover from chemo. These things will have to wait another day, however...and I'm off to the spa!
Love,
K
Wednesday, December 28, 2005
Frustration
This morning I went to my radiation simulation appointment. It went relatively well, I got my tattoos (two black dots), and I'm ready to go. However, somebody screwed up the scheduling. Dr. Morris told me, very distinctly, that she wanted me to be ready to start radiation on the 2nd. Well, apparently they don't have that note in the schedule, and Dr. Morris is on vacation, and they said they could get me going on the 16th. WHAT?! I negotiated them to the 10th, but they were very clear with me that this schedule could change at any time and I may not be able to start on the 10th.
Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.
I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.
Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.
Sigh.
Dammit. I just want this whole business over with, and a delay of even a day is unbearable. Two weeks is absolutely unacceptable. A week is incredibly frustrating.
I am scheduled for 33 treatments (Mon thru Fri at 1:45pm), with a finish date of February 27th. I won't mark that date on my calendar, though, as the start date is still not set in stone.
Damn, damn, damn. I really had my heart set on getting started with this so I could get finished with it, and it seems that the finish date gets pushed out farther and farther.
Sigh.
Tuesday, December 27, 2005
What's on the outside
(I will put a Christmas update posting another evening, I promise.)
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
I have been thinking a lot about what's on the outside - that is, my physical appearance. I know, I know, it's what's on the inside that counts. I know, inner beauty shines brighter and longer than outer beauty. I know that my friends and family love me for who I am, and not what I look like. I also know that I have a husband who assures me that he still finds me attractive, and a mother who still thinks that her little girl is beautiful. I know, I know, I know.
Here's the thing, though: I don't like what's happened on my outside. It may be shallow to think about, or to complain about, but the thing is that what's on the outside is real and tangible, and I hate what has become of my body. All of the assurances in the world that I look lovely can not change a few facts. I am still bald. (Yes, I have fuzz, but my scalp is still clearly visible.) I have no eyebrows. I have no eyelashes. I have gained 17 pounds on top of the extra weight I carried before chemo, and none of my old clothes fit. I am bloated. My skin breaks out regularly. I have no breast on my left side, and in its place I have a series of scars (a long, ugly one where the breast used to be; a shorter, deep one where the nodes were removed; and two centimeter long circular ones where the drains came out); on my right side (the "good" breast) I have a two inch scar where the portacath was inserted, and the portacath itself protrudes from under my skin, looking like the alien thing that it is. On my neck is another scar from where the portacath tubing was inserted. My fingernails and toenails are yellowy black from the chemo-poison, and they have rings on them marking the chemo treatments. My left arm and hand are slightly swollen from lymphedema. I am lacking pubic hair. I will gain more scars when my ovaries are removed, and when I undergo reconstruction.
It's a long list. I could handle one or two of these things better than I can handle the entire list. The list is too long.
When I look in the mirror, I don't see the person that I used to be. As a matter of fact, when I look at old pictures I see them with a certain detachment: it doesn't seem like me in the pictures any more. Even my face has changed shape and form from these changes, and I don't recognize the old me. I look at her and think how lovely she is. I miss her dreadfully.
Before anyone jumps in with a well intentioned "I don't see you like that" or "You're my friend/family member/whatever and I will always think that you're pretty," please stop. I am not fishing for compliments here, I'm laying it on the line to say that I recognize that this is my new reality, at least in the short term. Kind expressions denying these changes do not make me feel better, unfortunately, because the changes are real, unasked for, and diffucult to face, but denying them doesn't make them any less real or difficult. I am truly grateful for the love and support of those who care about me, but I don't think that anyone who hasn't been through this kind of thing can say the "right" thing.
I used to think that I didn't care much about what was on the outside. I've gone six months without getting my hair cut, I don't wear makeup, and my day-to-day fashion (usually jeans and t-shirts) is anything but fashionable. It turns out, however, that I actually did care. I wasn't thin, but my figure was feminine, and I liked my curves. My hair wasn't great, but it was soft and healthy. My dark eyebrows and eyelashes nicely defined my eyes. I looked healthy, and it turns out that there was a certain vanity in my lack of attention to my outward appearance.
I miss my old body more than I thought I would. Much more, actually. It turns out that what's on the outside DOES matter to me. What's on the inside matters more, I agree, but the outside counts too.
Some of what I've lost will return. I wll regain hair, eyelashes, and eyebrows that will be as good as the old ones. I will work hard to lose the weight and to get fit. The doctors will build me new breasts to replace the old ones. The new ones could never be as good (they'll be covered in scars and they won't be able to feel any sensations because they'll have no nerve endings), but they'll be better than what I've got. (I don't like my right breast any more because I see it as a potential timebomb, and I NEVER WANT TO DO THIS AGAIN...I would much rather have it removed and think that the risk of getting breast cancer again is reduced by its removal.)
I hope that as my body changes again, for the better, as I recover from treatment and get reconstruction, I can learn to feel feminine again. I feel as though my femininity has been removed completely from me. Outwardly, femininity is made of breasts, hair, eyelashes, and curves...all things that have been stolen from me. Inwardly, it helps to have estrogen...and I don't have that any more either.
Where am I going with all of this? I'm not sure. As I said, I do not want a series of denials out of all of this...I am not looking for compliments, I am just trying to share a difficult part of this journey. It's tough to acknowledge this part, because my Pollyanna nature wants to find something positive in it, but the truth is that there are no positive physical changes from this experience. Whatever inward strength I may gain from this experience, my body has been negatively impacted and will never fully recover.
It turns out that I do think that what's on the outside matters. I miss the old outside of me. I dislike the current outside of me. I hope that I can learn to like the future outside of me.
In the meantime, I struggle.
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