Yes, Tessa, that's right.

Today I read Tessa a new book, the classic tale of Sleeping Beauty. After the incredible success of The Nutcracker, we are going to return to the ballet, and this April they are doing the full production of Sleeping Beauty, and they will have children's matinees where the children are encouraged to come dressed like princes and princesses. This is too good to miss! We have started reading "Sleeping Beauty" as a means of introducing the story and helping Tessa to build excitement for the big day.

I bought two editions of the book. One is the Disney telling...not my favorite, but it's written at Tessa's level, and so I thought it was worthy on that regard. The other book has gorgeous illustrations (really, it's like an art book) and tells the tradiational version, not the Disney version, complete with language like "whenceforth" and "heretofore". Tessa didn't seem to mind the elevated language, though she did interrupt me dozens of times to get clarification on some of the words.

Well, at the beginning of the story, we are introduced to the King and Queen, and informed that they have been barren for three long years, and that they yearned for a child of their own. Tessa, in wisdom and innocence, turned to me and said, "Mommy, do wishes make children?"

I didn't have to think long about how much I had desired this beautiful child in my life, and how joyful I was when I learned that I was to become a mother. This is a much more eloquent explanation than any discussion of the birds and the bees that I could ever imagine...and it's just as true.

"Yes, Tessa, that's right. Wishes do make children."

I love my daughter for reminding me of what's important, and for melting my heart on a regular basis.

Love,
Kristina

More hair pics

Here are some pictures taken today. I think that not only is my hair growing, my face is getting slimmer from weight loss. I'll take whatever I can get!

The eyebrows in these pictures are not officially my own. Today, feeling frustrated and unfeminine, I headed to Sephora (a make-up store downtown) and had them give me a makeover, and then I bought a bunch of their products. (In these pictures, I'm not wearing anything on my lips, so just ignore that part.) I'm tired of not feeling feminine, and I'm trying to seize control. Maybe make-up will help!

Love,
Kristina

More on plastic surgery

I have been searching the web, and I found some pictures of before and after for breast reconstruction. I'm putting links here - don't look if you don't want to see!

DIEP and GAP reconstruction:
http://www.breastcenter.com/breastrecon/beforeafter-images.html

A variety of reconstructions:
http://www.dallasbreastreconstruction.com/presentation/breast_reconstruction_presentation_files/frame.htm

A walk through of different kinds of reconstruction:
http://www.breastcancer.org/bey_tre_recon_types.html

More pictures of breast reconstruction:
http://www.breastcancer.org/pictures_reconstruction.html

Blisters and surgery

(Now that's a dim title...!)

Today I have added blisters to my list of complaints. They're okay, and I can deal with it, but I have a 4" line of blisters on my chest by my arm. (This is a typical place to have problems, as I can't help my arm or shirt from rubbing against the radiated area.) Yuck. Hopefully not much more will happen to my chest in the next 24 hours because this has gotten really old really quickly. Today I bought some soft tank tops at Target, and I will wear them under my clothes with the hope that they will treat me better than my regular clothes have in this regard.

Today I also met with my surgeon, Dr. Dawson. I have tentatively scheduled my second (and final!) mastectomy for March 20th.

The surgery is tentative because I am getting conflicting information about what type of plastic surgery is best. Dr. Dawson (whom I admire and respect, and has a stellar reputation, and who did fabulous work on my left side doing a mastectomy) thinks that I can do a skin sparing mastectomy on my right side, and then have a plastic surgeon reconstruct it at the same time. This conflicts with what Dr. Welk told me, but since Dr. Welk's bedside manner was imperfect, and since I have a longstanding relationship with Dr. Dawson, I tend to believe what Dr. Dawson is saying. I have an appointment with another plastic surgeon for later this month, and I'm hoping that I will feel more settled with the other plastic surgeon and that I can get my questions answered. Hopefully, I will not have to delay reconstruction on the right side. I think I like being a uniboober better than having no breasts at all.

Side note: It was relatively easy for me to make the appointment for the mastectomy this time. MUCH easier than the first time. The first time, I had a tightness in my chest, a lump in my throat, and tears in my eyes as I learned how the surgeon would remove my breast. It was terrifying, and though I might have had a brave face on, I was awash in fear. This time, I'm resigned. I've done this before, and I know that I can handle it. I don't like it, but I can deal with it. Maybe this is because I no longer worry about losing parts of my femininity; having already lost most of my outward femininity (through mastectomy, hair loss, loss of eyebrows & eyelashes, and weight gain...heck, I don't even have estrogen any more!) I don't value the little bit that I have left nearly as much. On a less negative perspective, though, I also know that it's temporary. Hair grows back, weight can be lost, and breasts can be rebuilt. Just like that, I move from terror to resolve. Amazing. (End of side note.)

I'm very conflicted about what kind of surgery to do on either side. On my right side (non-cancerous) I can choose between a lat flap with implant and a plain implant. The lat flap involves a longer surgery and more difficult recovery, but is supposed to have better results. On my left side, I thought I wanted a DIEP, and then I thought I wanted a TRAM, but now I'm leaning toward the lat flap with implant on that side, too, because it doesn't involve a 12-16" scar on my abdomen and the removal (and replacement) of my belly button. (The scar on my back/side would be about 4", which is a piece of cake by comparison, it seems.)

Sigh. It's really up to me - plastic surgeons all have differing ideas about what is best, and if I was really sold on one of the techniques I could undoubtedly find a plastic surgeon with a good reputation who would agree to it. It's nice to have some control over my destiny, but it's also frightening because I have no idea what the "right" thing to do is and I am sadly lacking in medical credentials.

I'll figure it out.

And one more note...
After all I've been through, doing an MRI shouldn't bother me in the slightest. Well, I have to do another MRI before the surgery, and I'm really bugged by the prospect. The first one, last June when this started, was truly unpleasant for me emotionally, and I don't look forward to a repeat performance. Time to suck it up... again.

Tessa is with my parents, and so Ryan and I are going to go on a cheap date. Hopefully some wine and relaxed conversation will clear my head of all of these thoughts.

Kristina

Good news and then OUCH!

Getting dressed today, I discovered two things:

1. I can fit into some pants I bought at the beginning of the fall, and then outgrew. HURRAH! I'm also wearing a sweater that didn't fit a month ago. Things are improving!

2. As I slathered on Biafine under my arm, I felt something rough move under my fingers. I smoothed away the Biafine to find that my skin has degraded and now there is a piece of skin that completely rubbed away (the rough bit, as it turns out, was the top layer of skin lifting off...!), leaving a raw area underneath. ACK! Now my underarm is tender and I'm not thrilled about it, as you might imagine. I guess I am not immune to this, as I'd hoped.

I started to title this post "good news and bad news" but then I backed up. "Bad news" is something significant, like a recurrance, which I do not have. This is merely a setback, so doesn't qualify as bad news.

Kristina

A sunny Sunday

Today, for the first time in months, it was gloriously sunny outside. Beautiful! The three of us (with Tessa in the jogging stroller) walked to Starbucks, and then down to Lincoln Park to give Tessa some play time (4.7 miles round trip). We ran into friends at Lincoln Park, and Tessa loved playing and climbing on the play structures, but even more I think that she loved going down to the beach. Ryan gave Tessa some lessons on how to throw rocks into the water, and Tessa and I hunted for seashells together. The sky was blue, there were lots of people, we all got exercise (Tessa walked some of the way), and it was just a great way to spend a morning. If it's sunny tomorrow, I might just do a repeat of the experience because it really felt good.

Now, Artie & Anna are over, and the girls are playing while Ryan & Artie watch the Seahawks (Go Hawks!) in the Superbowl. I put out football foods - chips, salsa & guacamole; BBQ potato chips; beer....and then I heated up some Trader Joe's mini-quiche, crabcakes, and spanokopita. I have looked up the Weight Watchers point values for all of these items, and I must say that I may never eat another potato chip again! Some things (chocolate, bread, cheese, a good steak, pasta) are worth spending lots of points, but for me, potato chips just aren't that thing. I had 3 before I looked up the points and all I can say is thank goodness I didn't eat more!

My thoughts these days drift more and more to diet and exercise, and much less to cancer. I'm tired of cancer. It's taken so much of my energy that I just don't want to deal with it any more. Of course, I am dealing with it, on a daily basis. I still dream about it sometimes, and every time I get out of a chair I feel like a 100 year old arthritic woman because of the joint pain in my legs...and my chest is getting more and more sore and red, so I live with that minute to minute, too. But I don't think about cancer all the time like I did for months, and sometimes an hour passes without me thinking of it.

Anyway, back to diet and exercise...I am a woman possessed! I am just so tired of the downfalls of my body that it feels incredible to whip myself into shape. Every time I stay within my points range I'm proud of myself; I make good eating decisions most of the time because it's important to me. I love walking (though I wish I had more time for it), and I love that my body is registering these changes. I think that the changes are starting to show on the outside (thank heavens I'm back in my pants again....now I can't wait for them to be too big!) but on the inside, I feel like a different person. I don't feel like I'm on a diet, I feel like I'm on a lifestyle change. I really think that I am going to hit my diet & fitness goals, and that in doing so I will have the figure (except breasts!) that I desire. I feel more energetic than I have in ages (though I can't remember the me before cancer any more...what was that like?) and I'm soaking it up.

In the evenings, I am more and more tired. The other night, I got a bad night's sleep and not enough sleep, and the next day felt like a good chemo day (and if you've read this blog then you understand that even a good chemo day is a bad day). I will have to be careful not to lose sleep like that, because I hated how it made me feel.

I am thinking more and more about what the next steps of treatment should be. I am resigned to the idea of another mastectomy in the near future...I feel that I simply need to get it over with. I also think that I'm ready to commit to removing my ovaries, and maybe doing a complete hysterectomy. I'm saddened more than I can say to think that those operations will knock the wind out of my newly-filled sails again, but I try not to focus on that, and instead to just think about the here and now and how to keep my energy with diet & exercise.

Believe it or not, something that I've thought about in terms of diet is that if I'm in the hospital for surgeries, how will I stay on Weight Watchers? I know, that's crazy, and if I'm having operations then WW is the least of my concerns, but it's something I've wondered about. (It's much easier to wonder how to keep losing weight than it is to wonder how the surgeries will feel, or if the cancer is going to recur.)

That's all from me for now - cheers.
Love,
Kristina

14.4 pounds lost AND I'm a superhero

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

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.

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

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

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

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

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.

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

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.

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

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

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