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November 19, 1998...
 Friday 13, continued it's weird little way.....finally got to see the oncologist Friday afternoon. Explained the weird symptoms I'd
been having, told her I was still on estrogen, so it couldn't be hot flashes (now that's just what I'd need....mega hot flashes in
addition to radiation!) The doctor said there might be an infection in the lumpectomy site, to take my temperature, and if
elevated, let her know and she'd prescribe antibiotics. Well, there's a slight problem with taking my temperature. I forgot to
mark the "human" thermometer so I'd know it was safe to use. I ain't putting *nothin'* in my mouth if I don't know where it's
been, up to and including unmarked thermometers! I wasn't about to explain that to the oncologist.... I just said "Okay, will do."
When I told the oncologist that I was still taking estrogen, she said that more conservative doctors were telling their breast
cancer patients to stop taking it if they could do without it. She explained that it's a very controversial issue, and they don't
know how much hormones contribute to a higher risk of breast cancer. She suggested that if I could do without it, to stop
taking estrogen. I told her no one had said that I should stop, but I'd stop immediately.
When I shared my misgivings about the thermometer situation with Charlie, he thought it was very funny. No accounting for
humor (grumble, grumble). I didn't get a chance to take my temperature, and besides, they use an ear thermometer at the
hospital...if my temperature was elevated, she'd know it before I would. So, anyway, the symptoms went away, the incision site
looks fine, and the thermometers are still in question. The treatment goes quickly...they're only darkening certain marks now
rather than all of them. The fatigue is still a factor, but I'm compensating for it. I'm allowing myself the right to not do anything
more than I can.
Monday, Nov. 16
I didn't have a chance to get blood drawn Friday so I have to be there early to get blood drawn before the lab closes. The first
time I had it done, the phlebotomist did a great job, no bruising, no pain. This time, my arm has a bruise the size of a golf ball.
Several coworkers have looked, but haven't asked what the bruise is from.
I've noticed a noise in the x-ray machine that sounds like an aperature opening, and decided to ask the technician if that was the
case. She explained that she usually set the aperature before I came in the room, as she does for each patient. The noises I'm
hearing are built in wedges being automically placed to protect sections of the breast from too much radiation. The oncologist
specifies the dosage needed for the site of the carcinoma, and the computer reads all data gathered from the plaster cast of the
breast, and the measurements determined from the simulation and prints out a drawing of the treatment area, in this case, my left
breast. It's done with a color printer, and all the different dosages for all the areas are in different colors. Because of the varying
density in breast tissue, the drawing shows each section of the treatment area and what amount of radiation that area should
receive to keep healthy tissue damage to a minimum. I saw a computer drawing of my breast with the dosages listed next to the
colors. The focal point, where the cancer was found, gets 180 rads, and the areas surrounding that get less according to the
tissue density and location. The technician showed me my treatment schedule and I was absolutely fascinated with what I saw.
The drawing also showed where the wedges were to be placed for each phase of the treatment. She was quite willing to
explain anything I wanted to know and I'm glad...I like to know what's happening and why. I couldn't wait to tell
Charlie...knowing the dosage I'm getting (I don't know if that's high, or what, I forgot to ask, but I will next time), and seeing
the treatment schedule makes me understand the process a lot better and alleviates some of the anxiety I've had.
Tuesday, Nov. 17
I was scheduled to see the oncologist again today, to get back on the Center's schedule. It kind of got out of whack with a
bunch of new admissions for my oncologist. The doctor was a little surprised to see me, but I explained why I was there again
so soon, and she agreed that it made sense. She asked if I was feeling any pain and I said no, but I was still fatigued. We
kidded about the new computer system that had been installed and how it was driving everyone nuts. I explained that I was a
LAN Administrator, and the complaints were very familiar and so were the responses to the users and we had a good chuckle
over that one. They hadn't gotten the results of my bloodwork. She's pleased that I haven't had a reaction to the radiation, that
so far, there hasn't been any redness, or irritation. She also said that she hesitates to say too much about it because some
patients don't show a reaction until the last week of treatment. I told her with my luck, in week 5 or 6, it would turn bright
purple or something and we had a good laugh at that.
Wednesday, Nov. 18
As usual, I was the first one in. I turned on the television, couldn't find any coffee filters to make a pot of coffee and decided I
didn't really have to have a cup that fast. The old guy came in, signed on, turned on all the lights, and started to make coffee,
only to discover no filters. The receptionist showed up earlier than usual and went on a hunt throughout the center so he could
have his coffee. Some of the other regulars showed a little early and grumbled about no coffee, and so on. The old guy say that
someone else would have to start making the coffee because Thursday was his last day in treatment. He would be finished with
radiation therapy, and I thought he said he'd already done his chemotherapy. They were all pretty happy for him. The treatment
went quickly - I'm apparently lining up right away and that cuts the time down. They move my hips and shoulders so that I'm
just right under the lasers, but the actual site itself is lining right up. They cautioned me about lowering my arm too soon.
Occasionally the machine shuts off prematurely, and I could get the wrong thing radiated if my arm is in the line of fire. She said
I shouldn't lower my arm until I hear the door open. The room has two video cameras, and an intercom. If a patient has a
problem with the treatment, they can get to him or her right away. I expressed concern about coughing while under treatment
and that's when she explained that she could see and hear me and could shut the machine off immediately. I'd seen the cameras
before, but wasn't sure why they were there. On the way out, I saw the lady who'd mentioned getting her wig redone...she was
pretty late this morning, but she had her wig on and she looked really good. I almost didn't recognize her without her scarf. I'm
sure it makes a difference in how she feels about herself too.
Thursday, Nov. 19
..I've noticed that Wednesdays are what I'd consider my "bad" days. There's such a short period of time between the Tuesday
afternoon treatment and the Wednesday morning dose, that it wipes me out. I left work early and went home. I *tried* to lay
down for a while, but lost the battle for possession of the pillow. Sammy, Marcus and Jasmine won the trophy. Sheba, Rambo
and Sebastian were runners up....Linda left for the kitchen and some puttering. It's amazing how quickly a quarter loaf of bread
can get "lost" behind things. Yech! I called Charlie to let him know I was home so he wouldn't call the office and worry about
where I was.
Today is tinged with some sadness...last month a year ago, I lost Josie, today, one year ago, I lost Tribble. Right around this
time last year wasn't a great time; we'd lost Elissa, Josie and Tribble. Sigh.
The good part of this is I'm into week #3 of treatment, and the days go quickly. 3 1/2 more weeks and I'm done. They're
closed for Thanksgiving, so treatment will advance one more day. That takes me to December 17.
I'm weathering not having the estrogen replacement really well....Vitamin E and C control the hot flashes. If I stay off them
permanently, and I think I will, then I'll have to take calcium and some other vitamins and herbs....I'm going to look for a book
that gives a list of natural estrogen sources. I saw one at Waldenbooks and didn't get it at the time, but I'm definitely on a
mission!! Maybe, when I'm through with all this, I'll join a kickboxing class to get myself in shape....I'm losing some
weight....I'm not into snacking anymore, but I'd like to see my waist once again....we've been strangers far too long.
I'll post again next week. Take care.
November 30, 1998....
It's week number 5.....2 more to go and then I'll be done. The treatment is pretty much routine, and quick, so I'm not going to
do a day-to-day post. Just a summary of the week and what went on that was different, or information that I think you all
would be interested in. Two more weeks, guys! The lady with the scarf told me Friday morning that she has one more week to
go and then she's done. I'm going to miss her, but I'm so happy for her too. She mentioned in general chit chat that she had no
family history of breast cancer either, and it came as a shock to her when she was diagnosed. She said that it certainly changed
things for her two daughters and her sister. I told her that I didn't have a family history of it either and it was a surprise to me
when I was diagnosed with it.
The treatment goes well, I'm in a routine that is quick and efficient. I usually line up the first time around, so there's very little
positioning they have to do with me. I asked about the amount of radiation I'm getting, and the tech said it's about average. She
also said when they treat to cure, like they're doing with me, they give an average dose over a long period of time - 7 weeks.
When they do "palliative" treatment, to ease pain, they give higher doses over a shorter period of time. I also found out I'm not
supposed to have blood drawn, blood pressure or pulse taken on my left arm, because that's the side of treatment. No wonder
my arm bruised so badly from the blood being drawn there! The routine that has been established for me is blood drawn every
other Friday, doctor visit every Tuesday, pictures (x-rays) taken on Thursdays, and dosage monitoring when the doctor
requests it. It all goes pretty smoothly.
The fatigue is still very much a factor. When I get tired, I stop what I'm doing and take a break. When I find myself sitting in
front of my computer staring at the screen mindlessly, I know I've reached the point of "I have to go home now, my brain just
decided to freeze." I leave work and head on home. Wednesdays are a little rougher because of the morning treatment. I tire
faster.
My friend Connie gave me a beautiful pin for my birthday...part of the proceeds go to the Susan Komen Foundation. It's a
candle with a pink ribbon...the candle flame is crystal, and the ribbon has pink crystals in it. I wear it proudly.
I've noticed some changes that I'll bring to the doctor's attention tomorrow....I've got a spot of irritation that's a little
uncomfortable, and I'm really, really trying not to scratch it....but...it's like a mosquito bite...you can't help yourself. My left
breast is getting very tender to the touch. More so than it was last week. I mentioned to the oncologist that it was sensitive, but
not really painful...that seems to have changed over the weekend. I'll have to remember to tell her. So far there's been no
peeling, and very little skin reaction to the radiation, aside from the itchy spot. My blood pressure is lower and that's a good
thing.
I've discovered the hard way *not* to go to radiation therapy and then have a big breakfast. Because of the Thanksgiving
holiday, they were doing radiation therapy on Friday morning from 7:30 - noon, and Charlie went with me because he had off. I
normally have something very light about an hour or so after my Wednesday morning treatments, but Friday we decided to go
to a buffet that was open for breakfast. Dumb, dumb move.
I think the quickness of the treatment surprises Charlie. Just as soon as he settles in to wait for me, I'm tapping him on the
shoulder and saying "Let's go, I'm done." He looks at me and says "You're finished already? That didn't take long!"
The radiation technicians are threatening to get red and green markers for the Christmas holidays. I asked if I could have a
Christmas tree with ornaments in red and we all had a good laugh about that. I can see me now, taking off my top and Charlie
going into hysterics because I have this green Christmas tree with all these red ornaments everywhere............I had to laugh
myself.
When I was in Tuesday afternoon for treatment, a lady was just coming out of her radiation session and was joking with the
receptionist about going home and turning off all the lights to see if she glowed in the dark yet. It conjured up a mental picture
that stayed with me all evening and made me laugh. It reminded me of all those bad jokes about how many of "whatever" does
it take to change a lightbulb? How many b**bs does it take to illuminate a room? I chuckled over that one for a while. Charlie
wasn't sure about the humor in it, but I guess you had to be there to appreciate it. The lady was having a good time with that
one.
*Most* of the patients I've shared waiting time with appear to have come to terms with their illness, accept the treatment and
go on from there. Those who do chemotherapy in addition to the radiation and are there for a while almost become a part of
the atmosphere. The staff know them by their first names, chat with them, and treat them as part of an extended family. It
makes all the difference in the world as you sit and wait for your name to be called. No one asks questions you're not ready to
answer, but they speak casually about why they're here, how much further they have to go, and how they're feeling. I've
discovered I do the same thing....it's "old hat" now...the routine is set, I'm known there, I'm part of the group. It's an odd way
of feeling as if you belong. You feel sympathy and compassion for the new patients because you were there, in their shoes, in
the beginning. People make an effort to ease the fear by friendliness, respecting personal space and....I don't know if this is
making sense...it's hard to describe, but the other patients go out of their way to *not* exclude anyone from a conversation if
they care to talk, and will, at the same time, respect those people who need to be left alone and not prodded. When I first
started this, I would sit there and my muscles would be tight, and I'd feel like I was ready to run back out the door, but now,
I'm a lot more relaxed, and open to conversation with other patients. I feel like I want to go up to the newer patients and just
give them a hug and let them know they're not alone.
I now have a guardian....actually, I've had one since I started the radiation therapy. Sammy, my big gray boy now sleeps with
his head on my pillow and one paw across my arm. We can't dislodge him. As soon as Charlie or I move him, he's back and
digs in...and that's where he stays all night. Occasionally, I'll get my nose licked, or my arm, but he's appointed himself my
special, personal guardian and won't allow anyone too close to my chest area. He's very careful how he moves or settles, and is
quite gentle. It's so touching because Sammy was his own person, and didn't especially need to sleep in a certain spot. That's all
changed since my therapy.
My last week of treatment is the week of December 18, and as my reward, I'm going to see Cats! at the National Theatre in
D.C. on 12/17. I don't care if my butt is dragging five miles behind me, I will be there!! We're going with my friend Connie and
her brother, and my baby sister (she's 49..."baby" being used very loosely here). I'll let you all know how it is. I've missed three
performances since it's been on the road. Yes, I'm addicted to Cats!
December 5, 1998....
There was a bit of an unpleasant moment in the waiting area this week….I thought at first the person was a young child, but she was an adult. She slumped down on the sofa and started yelling at her 4 year old daughter, who was around the corner in the bathroom. I guess she was just too tired to get up and tend to her, and the child was having a problem. She yelled at her for a few more moments and then left the waiting room to tend to the child. She's obviously going through chemotherapy because she had no hair, wore no hat or scarf to conceal it, and was quite thin and fragile looking. How sad that she had no one with her to help with the little girl. This apparently wasn't the first time this has happened with this young woman, and the others waiting for their chemo/radiation treatments were a little upset. I have to admit it startled me because I was reading "The Cat Who Blew the Whistle" that someone so generously left for us feline freaks. So I sort of jumped after the first few words were yelled out. Not knowing her situation, her problems, the obvious lack of caring family to help with her child while she goes through this distressing time, or anything else about her, I'm not going to pass judgment on her actions, but it definitely upset the others waiting for their treatments. Some of them are elderly and quite ill, and don't need that kind disruption. It's unfortunate for everyone. My left breast is getting touchier, and the rash is spreading. There are very noticeable changes that I can see immediately. The underside and part way down my abdomen is really red, and so is my left armpit. It looks like a bad sunburn and is beginning to peel. I can't stand to have any of the kittens near my shoulders, neck or abdomen because my skin feels really sensitive to any kind of pressure. The doctor gave me a hydrocortisone ointment that I can use to alleviate the itching, but I can't have it on the treatment area when I come to the Center. The cornstarch helps alleviate the discomfort and feeling of rawness, but it's lousy as a substitute for deodorant. . I've been embarrassed once or twice on the table as I've lifted my arm. Even with bathing every morning and putting enough cornstarch there to dust 50 miles, with the very warm weather here, it's impossible to keep from perspiring. I'm mortified. They've been taking more x-rays on my left side…usually one suffices, but this week, they took two more than normal, and then again on Wednesday morning. Next Tuesday, I have to be placed on the simulator again, and they're going to "wire" my scar. I have *no* idea what that means! I'll have to ask today. Depending upon what they "see" with the simulator, the oncologist will make a determination about the actual length of my treatment. As it stands, I have 5 more sessions with the current team, and then 7 sessions on the other machine with another team. My treatment ends the week of the 21st, not the 18th, as I'd originally thought. I think they're going to change the dosage that last week, but I'm not sure. Again, I'll have to ask. The good thing is that they've scheduled the simulation for the same afternoon that I see my doctor, so I figure all questions will be answered…..I may not want to hear the answers, but there will be answers. I'm not going to worry about something I have no control over right now. I'm going out to play Bingo tonight, then a birthday dinner tomorrow for Charlie…my big galoot turned **50** December 3. I wished him a happy birthday and apologized for not getting him a present yet. *Tears*..he said he'd already gotten his present early...I was still here with him. December 9 Monday was a long day….they had some problems with some of the patients undergoing radiation and everything sort of fell behind….didn't bother me - I got to read a lot more of "The Cat Who Blew the Whistle". Yesterday (Tuesday) they did my regular radiation treatment, took pictures and then sent me to the simulator room. They really did "wire" my scar…..they took a wire frame and taped it in place with a special tape. The oncologist came in to oversee what the tech was doing, give directions on the angle and the marking…now I *really* do look like a bad game of tic-tac-toe and they *are* using green markers. I got the giggles when I saw the green. It took about 45 minutes to get the calibrations set, take the pictures necessary for the radiation techs to know where to set their machines and then I was in to see the doctor. My blood pressure was way up because of the stress of the simulator I guess, and I came out of there with a pounding headache. The oncologist looked at the peeling and the underside of my left breast and said that once treatment is done, all of that will go away. I asked about the dosage for the next stage of treatment and she said what they'll do is administer the same dosage, 180 rads but to a specific area rather than the whole breast and this time they'll administer it with an electronic x-ray machine. Because my cancer was superficial", meaning close to the skin layer, the electronic x-ray machine only sends the radiation so deep around the scar to kill any microscopic cells that may have been left behind after the lumpectomy. Seven treatments will be directed at the scar itself and the immediate surrounding tissue. The electronic radiation will go to a specific depth and no further…that's why they switch machines for the last part of the treatment. My final treatment to the *entire* breast is tomorrow, then Friday afternoon I start on the other machine, keeping the same schedule. Since they concentrate on the scar area only, the treatments aren't as long as the ones I'm getting now. They don't need to take any more blood to check the platelet count because that's been good all along. I can't decide which is more painful right now....wearing a bra or not...there's a lot more pain at this point....I've tried putting those small 100% cotton makeup pads in between the bra band and my skin to ease the irritation, and they didn't work too well. If I were less generously endowed, I could get away with not wearing a bra, but it's really obvious if I don't....my knees have an extra growth....a friend sent me a cartoon that showed a guy standing at a bus stop with a tee shirt on that said "Show me yer t*ts!! And this little old granny lady was lifting the hem of her skirt...you could just see her boobs under the skirt. The look on the man's face also helped make the cartoon. Well, I thought it was funny....whenever I think of not wearing a bra to work, that cartoon pops into my head and makes me chuckle. I know the pain will go away and the skin will heal and the "sunburn" fade, but right now it's uncomfortable. I consider myself lucky that this didn't occur in the first two weeks of treatment, that it's happening toward the end, and there will be plenty of healing time. There are some people who have reactions to the radiation very early in treatment and have to have their treatment stopped until the skin heals...this hasn't happened to me and I'm happy that none of my treatment will be delayed. This morning went fairly fast….I was going to enjoy my coffee and finish reading the "Cat Who" book, but apparently someone else was enjoying it as much as me, because it had disappeared from the waiting room. So a somewhat disgruntled Linda sipped her coffee and read "People" magazine instead, muttering unkind things about folks who remove almost finished books from waiting rooms. I don't know how concentrating the radiation dosage on the scar area will affect my energy level yet. I'll have to wait and see how things go next week. I would expect little or no change but who knows? There's one important benefit of not taking the replacement estrogen….my blood pressure is back to normal…it's dropped 24 points. My normal blood pressure is 110/60, and for the past 2 years, it was up around 134-136 over 80/90. Now it's 110/70. I'm not getting the pains running down both sides of my neck that were becoming a regular feature of daily life. I'm very pleased with that.
December 14, 1998....
Hi guys...I haven't posted for several days...I've been home with a reaction to the radiation therapy. Thursday, the last day of my regular treatment must have been too much for my system. I've had a reaction to the radiation and am now being treated for an infection. I'm so glad this didn't happen at the beginning of the therapy because it would have delayed treatment. I was hoping I'd be one of the ones who'd get through the whole thing with no adverse side effects. Rats.... Apparently mine isn't as bad as some, but it's bad enough. There's a special cream - Thermadene, that has silver nitrate in it (they use silver nitrate to treat burn victims - I used to work in a hospital pharmacy) so it's supposed to help keep the infection under control. They use a solution of equal parts hydrogen peroxide and saline solution to wash the area (boy is it *cold*!!!), pat it dry, put the Thermadene on the burned area, put vaseline impregnated gauze on top of that, put Telfa pads on top of that, and put a thicker pad on top of that and tape the whole pile of stuff down. I can still get my bra on, but one side of my chest sticks out farther than the other. Charlie had to play nurse over the weekend. It's been a trip!! I don't know how long I'll have to have the dressings on, but they'll take care of it at the Center every day until treatment ends, I guess. I'll be asking questions this afternoon...I certainly have a lot of them!
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