Actually it didn’t, but for one brief, shining moment I thought that it did.
In 2012 I went through treatment for breast cancer. During the chemotherapy phase I posted to a caringbride.org site an account of my treatment. I wrote about the sparkling wings of the steroid fairies, hysterical toe fungus, merkins (look it up), and Kansas plow-girls (my sister and cousins). The following is a copy of that journal. I have not included the Guest Book comments not only because they ran on for 102 pages, but also because a lot of my friends are writers who are funnier than me and I didn’t think you needed to know that.
Slightly Boring Background
On June 21, 2012 I had a routine mammogram. Two days later I got a letter telling me to come back for more testing. This annoyed me as several years before I had had a similar callback because the radiologist wanted to take a second look at routine calcifications that hadn’t changed in several years. I asked the nurse in my doctor’s office to call and find out if returning was really necessary. After she spoke to the radiologist’s office, she was uncharacteristically vague, simply saying that I needed to go back. So I was annoyed with her as well. But I went back the following day for what I assumed was another mammogram.
Well, hello. It wasn’t a mammogram. It was an ultrasound done by one of the physicians. Annoyance gave way to alertness. I was soon scheduling almost daily procedures and appointments. On July 5, exactly two weeks after my initial mammogram (despite a massive three-day power outage), I had a lumpectomy for a Stage 1A tumor, which was followed by a week of radiation delivered directly to the tumor site through a surgically implanted catheter.
The follow-up pathology was full of good news: the margins were clean and there was no lymph-node involvement, but a subsequent test (Oncotype DX) on the genes of the tumor cells was less good. I had an “intermediate” chance that the cancer would recur elsewhere in my body if I only had hormonal therapy. Several oncologists agreed that while I didn’t have to have chemo, if I were a member of their family, they would insist. So starting August 22, I am beginning four cycles at three week-intervals of (for those of you who know about such things) of Taxotere and Cytoxan.
Because all of this has happened so quickly, I haven’t done a perfect job of telling everyone what is going on, and I regret that.
And trust me, the original version of this post was about three times as long, but Caring Bridge thought I was too wordy and so I had to delete much of it.
August 20, 2012
36 hours before the start of chemo. I am feeling great, completely recovered from surgery and radiation (with a big assist from stopping drinking and increasing my thyroid meds, hard not to feel better).
I have gotten a comment that the “My Story” narrative wasn’t funny. “It was about having cancer,” I could have replied. “What do you expect?”
“But, Mom,” this commenter would have replied, “you usually try hard to be funny.” Note that said commenter would not have committed herself as to how successful I was at meeting said objective.
And she would have been right. I did try to write something worth reading only to discover that Caring Bridge had slapped a word-count limit on me (and please note that I just wasted one precious character on a beautifully placed hyphen). I know that I am torpedoing my current delightful sense of well-being on the 16% chance that some stray cancer cells are lurking in my liver or bones, but in truth I feel far more oppressed by the red “character used” bar marching at the bottom of the screen.
August 22, 2012
45 minutes into chemo, and I haven’t lost my hair yet. (That’s not supposed to happen for two weeks.). My hand and arm are cold from the infused drugs, but I am comfortably nestled into one of the private rooms.
August 22, 2012
Okay, now Caring Bridge won’t let me start a new paragraph. What’s with that? Chemo went very smoothly, a slight headache now, but that’s all. . My younger daughter and I went to see the movie “Hope Springs” after the chemo session, and I enjoyed it …except that the action leading out of the climax and into the ritual death never got accounted for in the resolution. Some of you are going to understand that. The rest of you will think that chemo brain has already set it, but you would be wrong.
August 23, 2012
Caring Bridge is letting me use my “enter” key to make paragraphs, but steroids kept me from sleeping. Were the choice mine, I’d give up the paragraphs (but not hyphens).
Most chemo patients are given oral steroids before and after each treatment as well as an I.V. hit immediately before the chemo drugs. This is to help with nausea and to prevent other side effects. When I have taken steroids in the past, I turn into a yippy little terrier, talking at warp-speed. So I’m taking a fraction of the oral dose, but the I.V. dose was a standard- minimum. Hence I slept very little last night so I don’t feel stellar today — more like an aging St. Bernard than a terrier — but I assume that it is from a lack of sleep, rather than anything more dramatic. Still have the hair.
August 23, 2012
Ah, the fun side of steroids has donned her little sparkling fairy wings and is frolicking her way through my endocrine system if that is how steroids in fact work . . . but we mildly hypomaniacs do not care about how things in fact work. We float, we cavort, we own our inner terrier-ness.
I am not as loopy as this makes me sound, but I am flooded with energy, a sense of well- being, and undoubtedly spurious clarity of mind.
When I was dragging earlier today, I savored even the briefest messages on the Guestbook. That’s the only way I know who has dropped by. So you don’t have to write anything meaningful or witty (unless you too are on steroids, then you need to be a hoot); just let me know that you were here . . . if you want, of course.
August 24, 2012
When steroids are a rhinoceros rumbling through the murky water of zoo’s concrete pond, Ambien’s 5 mg butterfly net can’t do much. But when the steroids have scattered into a cloud of little twinkling fairies, Ambien can swoop them up and let me have a good night’s sleep.
(So who do we blame for the over-writing in that paragraph, the steroids, the Ambien, or me?)
I have a lovely sense of well-being. I’m not aware of feeling maniac (but that’s probably part of being maniac -you don’t know it). “This isn’t so bad,” I am saying to myself. “It’s actually pretty good”
Cue foreboding music. Innocent blonde-haired child skipping through the meadow unaware of what lurks in the trees.
I’m not innocent, I’m not a child, I’ve never been blonde, but I still have hair. Go, me.
August 25, 2012
The steroid fairies have packed up their wands and departed. They have work to do elsewhere. It turns out (and I read this on Wikipedia so it must be true) prostitutes in Bangladesh take this particular med to try to hold onto body fat. How desperately sad is that thought.
I am starting to get the bone pain often associated with the Neulasta shot which I got the day after the chemo treatment. This injection is to designed to put your bone marrow into overdrive producing more white blood cells — white blood cells being collateral damage in the chemo vs. cancer skirmish. My body rarely does “drive,” much less “overdrive,” so the protest is hardly surprising. I have taken Claritin for the pain, which seems odd but again I read about it on the Internet so it must be true, right? (Although I don’t think of myself as a person with trust issues, I did check with my oncologist about this.)
August 26, 2012
“Listen to your body,” everyone has said. Forget that. I spent a good chunk of yesterday listening to my body, and it’s one cranky whiny self-pitying brat. “We don’t like this . . . Why are you doing to this to us?” all day long. I wanted to slap it and put it in time-out.
Finally my patience wore out. Daughter #1 is here for the week-end. I told her that we needed to stop listening to this irritable fusspot who was sharing our home. She got me out of my chair. We made jam and soup and did some simple exercises. While we were busy, I stopped thinking about feeling crappy.
Such a challenge — how do you know when to push yourself, distracting yourself from whatever you’re feeling, and when do you rest, knowing that in those moments you may be more aware of the discomfort? Any wisdom anyone has would be much appreciated.
August 27, 2012
The ache in my bones has quieted into discomfort, and the lethargy has begun to feel safe, a heavy soft blanket keeping me swaddled into my chair, a smothering presence that I would resist only for the sake of resisting.
I had a reiki treatment yesterday. Toward the end I started thinking of many of you, my friends, seeing your faces; you had your hands extended. I knew that if ever this journey comes to seem too hard, so many of you would step forward and take my burden for a moment or two while I catch my breath.
August 28, 2012
I thought I knew everything about being a physical slug (mentally, I am Gabby Douglas although I will soon have rather different hair issues), but yesterday was extraordinary. With the exception of a 4,000 step walk (or 3922 steps if you are counting and my pedometer was . . . although it doesn’t count the steps I take while looking for it which just doesn’t seem right), I barely moved from the recliner which my daughters and I had hauled up from the basement and which now squats in the family room like a major Dad chair.
My friend DB spent most of the day here, working on a draft of her book. My greatest exertion was sitting in the kitchen rocking chair, supervising her while she did my dishes. SW comes today. I may accompany her while she runs my errands. But maybe not.
I think I am wrong to describe myself as a mental Gabby-Douglas. I’m probably a former mental Gabby-Douglas. I don’t know if I should have used “that” or “which” in the last sentence of the first paragraph, and I’m not sure about the hyphen in the first sentence of this one. Sigh.
August 29, 2012
I was prepared for the worst, having heard stories of people twisted with nausea or nailed in place from fatigue. Lance Armstrong, with whom I have a great deal in common as neither one of us has seven Tour de France titles nor has either of us ever failed a test for illegal performance-enhancing drugs, wrote about chemo corroding his body and spirit.
These stories didn’t discourage me because I did know that most of them were from treatment plans ten or more years old, but they did mislead me. Because I wasn’t at all nauseous and because I could still take my 3922-step walk, I thought I was doing pretty well. No, said the nurse practitioner at the oncologist office, seven days of needing to take Tylenol every four hours for headaches and flu-like symptoms isn’t doing pretty well. So I have had more blood work done — white blood cells are better than before (no wonder my pelvis hurts, it’s working way too hard), platelets are below normal, but that should improve. They will tinker with the anti-nausea drug at the next chemo treatment. She predicts a few more days of perhaps increasing fatigue, but then I should start perking up.
August 30, 2012
What dreary impossible tediousness. Speak to me and I cry. Ask me to make a decision and I am overwhelmed. And even though I know that the conventions of rhetoric composition urge a third element in that “speak/ask” series, I cannot come up with one.
Sigh . . . yesterday the nurse did say that I would feel worse for a few days before I felt better, but I focused on the “better” part, ignoring that I would actually need to endure what was worse. Where did those happy little steroid fairies fly off to?
August 31, 2012
The physical difficulties remain the same, perhaps worse — I didn’t join my neighbors for our morning walk -but at least I have recovered my emotional equilibrium. I am no longer the Victorian kitchen maid who throws her apron over her face and dashes from the room in tears every third page (not that I am capable of dashing anywhere, and I am certainly not wearing an apron — why should I when a different friend comes over each day to do the dishes and refresh the flower vah-ses?). It is a relief to believe again that I will be able to cope with this . . . and to remember that the prostitutes in Bangladesh have a much hard road than I do. (Lance Armstrong did too, but he seems to be a big fan of pain and suffering.) (And none of them would probably mind over-much if they used ‘rhetoric’ in a post when they should have used ‘rhetorical,’ but I certainly do.)
I have been thinking of this week as a case of the Mother of All Influenzas, but alas some tingling in my scalp this morning reminds me that it is not. Looks like we’ve got some cell-death action happening beneath the flowing tresses.
September 1, 2012
I am a reasonably patient (i.e. well-medicated) person, but clearly I have no patience with the notion of convalescence. I felt much better this morning. I even loaded the dishwasher myself. But when it came to wiping the counter and sweeping the floors, no, I had to sit back down in the major Dad chair.
I watch too much TV, shows in which laborious and tedious recoveries happen behind the scenes of a 120-second commercial break. But I am being greedy ingrate. It is lovely to be feeling better, and I should be thrilled that tomorrow I’m likely to feel better still.
But, come on already, you sluggish little platelets, get with it.
September 2, 2012
The upswing continues; I am feeling better and better. Not quite up to the Sunday-morning “oh, crap, I had too much to eat and drink last night” feeling, but that’s the goal for tomorrow.
September 3, 2012
I actually accomplished something! It was the most routine mending project, but I did it, even binding the new seam with a bias strip.
My spirit probably has more energy than my body, but I am feeling euphoric . . .without being on steroids. So, yes, while I have to go through the woes of last week three more times, I will also get to have this sensation three more times, the deliciousness of starting to feel better.
September 4, 2012
When I washed my hair on Sunday (would you read a book called The Last Shampoo?), a single strand of hair twisted around my finger. I flung it across the room as if it were a snake. Monday I touched my hair as little as possible. I didn’t want to know, but today there is no question.
Oddly enough the left side of my head is shedding more rapidly than the right. Perhaps the creative energy in the right side of my brain has been keeping those hair follicles on life support. Or not.
I am in touch with a friend who used to have her own salon, and she will come over and mow the lawn into what will hopefully be a boyish cuteness (but I’m not real hopeful about that).
However, I am feeling good physically. A 6500-step walk at a more vigorous pace. So with that sense of wellbeing, I intend to view losing my hair with a good Midwestern matter-of fact shrug.
September 5, 2012
Feeling nearly normal today . . . but if that is all I said, my neighbors would call 911. “She only posted four words,” they might tell the dispatcher, “something must be terribly wrong.”
So let’s talk about language, the one thing I find almost as interesting as I find myself. After my husband died, it took me a long time to be comfortable with the word “widow,” and again I am hesitant about what language to use.
Verb tenses are problematic. I found out for sure that the tumor (as opposed to “my” tumor) was malignant on a Monday; I had a lumpectomy on Thursday. So for those few days I could have said, “I have breast cancer.” But I didn’t; I said, “I am going to have a lumpectomy.” Preparing for surgery was what felt real and urgent.
Odds are that I no longer have breast cancer. So I could say, “I had breast cancer; that’s what I did on my summer vacation. What did you do on yours?” But since I never owned having breast cancer — not that I was in denial, I just hadn’t wrapped my mind around it –it’s hard to talk comfortably about having had it.
And what now? Lots of people use militant metaphors — fighting breast cancer, waging a valiant battle, etc. etc. I don’t feel that I am doing that. The chemo is doing that, marching out with swords drawn and flags flying. In the chemo vs. cancer battle, I am the battlefield with the withered trees and poisoned water… (And of course, it is quite likely the little chemo warriors are blowing up bridges and burning down farmhouses, looking for an enemy that doesn’t exist.)
“Undergoing breast-cancer treatment” is the only phrase that seems to fit. Perhaps I should focus on getting comfortable with “bald and beautiful.”
September 6, 2012
Do we think that the authors of other Caring Bridge pages have friends who post about the healing properties of Peruvian earthquakes? Probably only if they know our Cathy Maxwell (who could call herself Cathy Kansas if that didn’t make her seem like a designer knock-off version of me).
I assume that the death of old cells and the birth of new ones happens continuously; microscopic Peruvian-earthquakes are vibrating through all of us. Chemo just takes that process out from under the microscope and puts it on center-stage.
During the summers I have an in-house spiritual advisor (a student rabbi who lives with me while working with the kids at our temple). When I learned that I was going to have chemo, I asked her if I could sit shiva for my hair. Rabbinic student that she is (i.e. she has a better excuse for going out in left field than Maxwell does), she answered with a story from the Torah about the protocol for when a soldier wants to genuinely marry (as opposed to rape and abuse) a captive. One step involves the woman shaving her head in part as a challenge to the man’s intentions (not all guys go for the “bald is beautiful” thing), but more importantly as a signal to her that she will need to reinvent herself, leaving behind her family, language, and culture.
So Rabbi R. recommended using the loss of my hair as an opportunity to mourn what else I am losing and, when the hair returns, to celebrate any larger growth and renewal.
But what am I losing? Some pounds . . . believe me, I am not grieving them. Several months of productivity . . . I’ve been here before; for a year after my husband died, I watched Law and Order reruns; that was my job, get up and watch Law and Order reruns. My vision of myself as a person who didn’t get cancer . . . okay, but that was hardly an important part of my identity.
The loss that terrified me before the chemo started was the loss of my narrative imagination, which took a huge hit from menopause. I am participating in a Georgetown University study on the cognitive effects of chemo. I took a two-and-a-half hour series of tests before I started chemo; I will repeat them in a year and then again in two years. The tests were checking memory skills and some problem-solving, but not what I was worried about.
Nor is it the stylistic fireworks that I can obviously still muster. Many romance writers talk about the “girls in the basement” who send the stories upstairs. William Butler Yeats dreaded the desertion of the circus animals. If menopause knocked them all to the ground, what is chemo doing to them? They are already silent. Will they come back?
But to use another friend’s favorite word, I realized that I have to surrender to the moment, accepting that I do not know what the outcome will be. I might have dreaded chemo, but I have never questioned the decision to have it. I therefore have no choice but to wait with as much serenity as I can muster.
If any of you sign the guest book saying that you just know my creativity will come back, that serenity will disappear. I shall hunt you down and throttle you because you don’t know. You can hope, but none of us can know.
September 7, 2012
I wore my cranial prosthesis for the first time yesterday.
A cranial prosthesis is what you might call a wig, but you would do so only if you wanted to pay for it yourself. If you (or more importantly your doctor’s prescription pad) call it a cranial prosthesis, then your insurance company springs for it.
My C.P. is far cuter than my own hair has ever been. It has volume that the homegrown stuff has never managed. Soft and fluffy, it is also an age-appropriate style. Until I started trying on these medically necessary devices, I hadn’t realized that the extent to which clinging to my shoulder-length hair was actually aging.
Since we are doing vocabulary today, I will share a new word which I learned from one of my first-cousins once-removed (they are a bunch of glorious rascals) — merkin. You will have to look it up yourself.
September 8, 2012
I overdid it yesterday. 7234 steps by nine am (whereupon I forgot to put the pedometer back on), then two hours of errands. I had to repair to the major Dad chair for many hours before I could sew several chemo caps for myself (although the first one was actually for a small child somewhere, owing to my errors in calculating the stretch and accommodating the bulk of Minkee-brand fabric).
But where I really overdid it was on yesterday’s journal. Why didn’t I save “merkin” for another day? Sorry, folks, but yesterday’s overachieving leaves me today with nothing (in so many ways).
September 9, 2012
I have been shorn. I finally connected with the neighbor who used to own a hair salon, and she appeared on my doorstep this morning with a black vinyl cape and an array of scissors. She prefers not to shave women, sending them directly into baldness although that would have saved her a great deal of time. She carefully scissored my hair into the crew cut of a little boy whose parents have too much money. The cut had shape, being slightly longer on top (1/4 inch rather than an 1/8) and following the natural growth pattern (or former growth pattern) of my hair. “Okay,” I thought when I finally looked in the mirror, “this is bad, but it isn’t hideous. It really isn’t.”
I still put on my wig to go see my pregnant niece. God knows we didn’t want her to take affright in her delicate condition.
It is now four hours later. I took off my wig to look at myself before writing this . . . and after four hours of sweat and friction, well, we are moving into hideous-land. What simply seemed very thin a few hours ago is now definitely patchy. This is the hair-do of a cancer patient; there’s no doubt about that.
I was worried about seeing myself like this for the first time, but as with most everything, the dread was far worse than the doing. Furthermore, I was encouraged at how okay it looked at first. I can imagine next winter wearing very very short hair without worrying that I will jeopardize anyone’s pregnancies.
September 10, 2012
“A picture may save a thousand words,” a friend once told me, “but it sure takes a lot more memory.”
And who was that friend? Only the first person in this guestbook to ask for a picture. For heaven’s sake, Lynn Berry, I thought you were on my side.
I find taking pictures wildly frustrating. For years I could never find my camera and the appropriate cord during the same week, and even now that my cell phone has gotten all uppity on me and professes to be a camera too, I’m still not any good at it. Furthermore I am so annoyed by people stopping everything to take pictures that my kids almost don’t want to vacation with me even though I am paying their way.
But if I weren’t me, but one of you, well, yeah, I’d want pictures. So this morning I fluffed up my hair to its full 1/4 inch glory, stood in front of a mirror . . . and took a lot of pictures of the back of my cell phone. My cell phone with the lower right quadrant of my face, my cell phone in front of my nose and mouth. Then I got me squinting down at the cell phone trying to find the right button to push. Eventually I got two of my head; the one in profile makes me look like an aging Roman senator posing for the back of a coin.
So where are they, Kathy? They are still in my phone. I’m supposed to avoid unnecessary stress, and so figuring out how to post them on this site — without them permanently being the first thing everyone sees when they log on — is the challenge for tomorrow.
This is intended to be about my health. My second round of chemo is on Wednesday so I saw my oncologist today. My platelets are approaching the upper limit of the normal range, much higher than they were prior to chemo. My other numbers are close to what they were prior to chemo, except my red blood count is a little lower, but still within the normal range. My HCT is much lower, virtually at the lower limit of normal, but I have no idea what HCT is so we are just going to ignore that. I feel fine. I don’t have as much energy as I usually do, but again I am going to ignore that.
September 11, 2012
Okay, there are now two pictures, me in the cranial prosthesis and me as cancer patient, in the “Photos” section (located on the banner immediately under “Kathy Kansas”). They were taken by a friend so my red cell phone does not make an appearance. Enjoy them now because they won’t be up there for long.
September 12, 2012
So where are those bad-ass steroid fairies and their little sparkling wings?
I had my second treatment this morning. My anti-nausea drug was changed (in hopes of reducing the massive amounts of Tylenol I took last time to deal with the headache-flu feeling), but all else was the same, including the 10mg of the steroid.
On the afternoon of my first treatment I felt okay, went to the mall with my daughter, spent money on her, saw a movie. Now I can’t move. One of my cousins worried about my bringing the major Dad reclining chair upstairs. She said that you can lose whole family members in the folds of those chairs. And she is right. I feel okay, just so inert that I have become one with the chair. How will mahogany-brown leather skin, tufted with matching buttons, look with the new cranial prosthesis?
Although, even immobile, I did manage to spend money, booking a cruise to Alaska for the three of us in June, but that’s was just a matter of calling American Express and saying, “why the hell not?”
September 13, 2012
Now I know why I was so physically exhausted yesterday. My body was busy . . . gaining 5.2 pounds. In 24 hours. Seriously, what is that about? In normal times I would not question my ability to gain 5.2 pounds in 24 hours, but right now I am not drinking alcohol or eating processed foods, red meat, dairy, or sugar. How can you gain 5.2 pounds without eating birthday cake and ice cream all day?
One hopes that is a result of the directive to “force fluids” the day of chemo (yesterday), but 5.2 pounds is certainly not the happiest way to start the day.
I’m finally starting to feel human again. The old steroid magic.
September 14, 2012
Well, duh. If you want to gain 5.2 pounds in 24 hours without eating birthday cake and ice cream, instead of going to Baskin-Robbins, go to your friendly neighborhood infusion center and have three I.V. bags hung plus saline for a pick-me-up and a chaser.
Apparently it takes longer to pee away I.V. fluids than ones ingested more traditionally (and what were you thinking of, Keely?).
Speaking of guest book entries . . . I’ve always felt superior to people whose human contact is primarily on line, but pride goeth before and all that. I am out and about less these days so the comments on the guest book do mean a lot, even the brief ones. I’m also getting private comments from people who gush about how much they are also enjoying the posts. A lot of my friends are writers, I remind them, people who can sling the words around. But of course I also understand why some of you may not be comfortable signing the guest book as your real name does seem to be displayed. So no pressure, just gratitude.
Yesterday (first day post chemo) was very good. I was dragging in the morning so that I didn’t go to an exercise class I was interested in, but at ten o’clock the steroids kicked in, and I was a happy girl. But the bone pain from yesterday’s “put your bone marrow in overdrive” shot seems to have kicked in earlier. I am very conscious that parts of my skeleton conform to the pictures that we all saw in biology class . . . although if you are worried about that, it’s probably easier just to go in for an X-ray, or better still, don’t worry about it and go to Baskin-Robbins. If you go often enough, you won’t be able to find your bones.
September 15, 2012
Except for the bone pain, which is better than yesterday, I can’t say that I feel bad, but I seem unable to do much or engage with anything. Time is moving slowly.
Although it is hardly far to blame time. Chemo works by killing fast-growing cells. Healthy cells manage to repopulate themselves; cancerous ones do not. So all my fast-growing cells have taken to their beds and turned their little faces to the wall, seemingly taking a great deal of what I think of as “me” along with them.
A striking evidence of the changes is that surface injuries are not healing. A week ago two blisters mysteriously appeared on the back of my hand near the base of my thumb. They looked like friction blisters, but that’s not exactly a part of my body that is subject to massive overuse. The blisters arose and popped in a single day, but the remaining spots have barely even scabbed over. They are just there along with every little cut and scrap that I have gotten in the last three and a half weeks. But what can I do? I coat them with Neosporin and will wait for them to figure out this healing business at their own pace.
September 16, 2012
My hair is almost gone, my eyelashes are falling out, I have little stamina and an erratic appetite. I hope that I have faced those and multiple other forms of cell death with gallantry and wit.
So what had me at three a.m. struggling not to cry for fear that if I started, I won’t be able to stop? These two stupid unhealed blisters on the back of my hand, two little red mounds of inflammation topped by thin, pale green scabs. “We’re trying, Mom,” the pathetic scabs are whimpering, “we really are.”
I got up, turned on the lights, and dug out my great-aunt Nora’s pink lace gloves, thinking that I could wear them to Rosh Hashanah services this evening.
Our congregation is understanding and tolerant. I could go wearing a particle mask and wheeling an oxygen tank. But pink lace gloves? That’s not exactly our style. I guess I will stick with Band-Aids.
September 17, 2012
Who would have thought it possible to participate in High Holy Day services from a major Dad chair? Actually I could have participated in the service from my own major Dad chair as our temple does stream the service real-time, but connecting with prayers is a challenge for me in any environment. I was afraid that if I stayed home, I would end up playing Angry Birds during the Aleinu.
Our sanctuary has a quiet room for crying babies, but during the holidays, when families with little children are strongly encouraged to attend alternative services, the room is open to anyone. So my girls and I arrived early to get seats there, officially because I wanted to avoid sitting next to someone who was sick, actually because I wanted to be comfortable.
The room was equipped with a gliding rocker, a reclining chair, an old pew along the wall, and a Berlin-airlift quantity of toys. I took the recliner which proved not to be a major Dad chair, but a major Gramps chair. One of the controls would have elevated me forward and up in case I couldn’t rise from a seat myself.
We watched the other congregants enter, feeling a little disengaged as we were looking at them through soundproof Plexiglas and hearing them through a speaker. Soon four middle-school kids slipped in and sat on the pew.
Then three more joined them. “Can we stay here during the whole service?” one whispered. After getting an affirmative, she slipped out of the room, and suddenly there were ten middle-school kids in the room.
Oh, dear. Ten middle-schoolers in a close space surrounded by baskets of toys that they would remember having played with? I turned and, in a much more pleasant voice than I would have used if I had known them, explained that I was here because I was in cancer treatment and I hoped that they could be quiet. Fortunately they were well-brought, highly realistic human beings who knew their limitations. They disappeared.
Just as the service was beginning, a young woman came in with her baby despite the many alternatives. She sat her baby down, gave him some toys, and started checking her email on her phone although of course she might have been playing Angry Birds. Since my girls and I were determined to participate in the service, I sweetly/snarkily handed her a prayer book. She never participated in the service, but at least put her phone away. (I assume that she was not a member of the temple, but was here visiting family.) Her baby did what babies do, played, babbled, cried, had dinner, pooped, but was certainly far less disruptive than ten middle-schoolers would have been.
I did not wear my pink lace gloves (see yesterday’s post), but my daughter had purchased a whole Band-Aid wardrobe, and she concealed my most unhappy wounds. I think that if at this morning’s service we are joined in the quiet room by more pooping babies, I will rip off the Band-Aids. No sane person would want a baby around these oozing sores.
On that note, Happy New Year!
September 18, 2012
Since my husband died, I have worn four rings on my left hand, both of our wedding bands, my engagement ring, and a sparkling ring guard he gave me at a special moment.
Wearing his ring has mattered a great deal to me, more than even I can put into words.
I woke up this morning with my ring finger hurting; it was reddened and chafed. I had to take all the rings off except my worn, nearly 40-year-old wedding band. This was difficult.
I had taken a tiny dose of steroids for a few extra days to get through Rosh Hashanah so I suppose today’s descent is not surprisingly. Fortunately my cousin from Indiana arrives in an hour or two to stay with me until Saturday.
Don’t worry if I don’t post tomorrow. This isn’t easy, but I can handle it. However, a vicious thunderstorm is coming this afternoon, and that is something that our power grid cannot handle very well.
September 19, 2012
The power grid and I both survived yesterday’s storms although my neighbor’s communication lines have come down and are drooping across our shared driveway. But even in their sagging state they are managing to do their job. Their work ethic is exemplary . . . and fortunately we aren’t challenging mine by giving it any assigned tasks whatsoever. My cousin is doing everything.
Having someone in the house keeps me from giving into the sadness and self-pity of yesterday morning. What a relief that is.
September 20, 2012
My family of origin would have been done ourselves proud in the Xtreme Empiricism Games. If you couldn’t study something in the lab and have the results published in a peer-reviewed journal, well, why bother? But one can evolve, and I have increasingly become open to (or at least not contemptuous of) all things woo-woo. As I have had an “all hands on deck” approach to slaughtering any stray cancer cell lurking in my body (i.e., having radiation and chemo), I have also adopted a similar attitude toward coping with the side effects of said weaponry. Bring on the woo-woo. I have adopted a nearly vegan diet; I have weekly reiki treatments from a therapist also trained in aromatherapy. Why not?
And yesterday I went to the acupuncturist.
Did it help? Beats me.
My cousin from Richmond (as distinguished from my cousin from Indiana who is, at this moment, washing my powder-room curtain, saying that that will make her happy, which suggests she needs therapy of some kind or another a lot more than I do) was correct to be worried about the major Dad chair. Sitting in its cushiony depths for hours on end has left my back hurting and my groin muscles tight. But a morning visit to my yoga instructor stretched away those pains (I’m not counting yoga as woo-woo; that’s how highly evolved I am).
So as I waited for the acupuncture to begin, I was fatigued, groggy, but not in any pain. One minute on his cushiony table, and my lower back was hurting again. No repositioning of pillows eased things. So much of the session was spent sticking needles into me to try to alleviate a pain that I hadn’t had ten minutes before.
The pain didn’t go away, but I did feel increasingly alert during the session. I reported that, and the acupuncturist said, “Oh, we don’t want that.” I don’t know what he thought I meant by alertness, but frankly I like being alert.
And I did sleep well last night without taking a sleeping pill, the first time in a week I haven’t taken a pill. Some of that might be the acupuncture, but I’m inclined to giving a lot of credit to the cousin from Indiana who made me sit in the hot tub for 30 minutes and then gave me a long foot massage right before bed.
Yet I am perfectly willing to go back to the acupuncturist, and he did feel that I could benefit from treatments more focused on “cleansing” . . . and then he had not available appointments until October 6. Great.
September 21, 2012
A bit of foot drama yesterday evening. Earlier in the day I had gone to see the nurse practitioner about the sores and random blisters that continue not to heal. She shrugged, said that she had never seen anything like it, and gave me an antibiotic seemingly because she couldn’t think of anything else to do (this is the first time I haven’t been pleased with my medical care). She also said that it looked as if I might be getting a toe fungus, “and those can be pretty hard to get rid of it.” Call on Monday if things didn’t improve.
Soon after my second toe (hereto unaffected) developed a little blister and then in the evening started to swell and throb. Having worked myself into some alarm by reading about toe fungus on the Internet (stick with reading about merkins, people), I called the oncologist on duty who admitted to being mystified, but as I didn’t have a fever and was already on antibiotics, he suggested some home remedies to try until morning. So I spent the rest of the evening soaking my feet in bleach — yes, Clorox bleach, although it was dramatically diluted -pretty much giving myself the treatment that my cousin had been giving the bathroom curtains.
Whether or not one can develop hysterical toe fungus from too much reading on the Internet, I don’t know, but the throbbing was gone by this morning, and the swelling seems to be a little less. So I am at peace with the issue for the week-end and have set up some more appointments for Monday.
And today has been good; I don’t have tons of energy, but I have had moments when I’ve actually had a sense of well-being, a feeling that I probably haven’t had since late June. I am clearly on the upswing of this particular cycle (the second of four).
September 22, 2012
I felt good when I work up this morning. I took my cousin to the airport, driving for the first time in more than a week, came home, and made a list. Fifteen minutes later, I realized that “good” was not the same thing as “normal.”
A friend was told that the people who best survive the emotional drain of chemo are those with fibromyalgia and other such conditions. Those people have already learned to live with limitations; they accept that they don’t always have a lot of energy, that they frequently have to be tender with themselves. Marathon runners, she was also told, often rage fruitlessly during chemo; they are unwilling to accept limitations.
I’m no runner, but I’m also short on the serenity of acceptance. The serenity prayer? I bail during the first line. What’s this “cannot” business? I grew up on The Little Engine That Could. “I think I can, I think I can” -isn’t that the key to doing?
There was nothing on today’s list that I cannot do; I wasn’t planning on spreading mulch along the back forty. I should accept that I will not feel this way forever; this is simply I feel like now.
But the blisters on my feet that keep me from walking for more than a few blocks? No, I’m still pissed off about those.
September 23, 2012
A little bit of Tylenol, and I feel fine . . . except that fatigue has been me nailed in place. It’s odd and annoying.
I did manage to finish one item on yesterday’s list, but at least it was the biggest — stuffing, sealing, and counting invitations to the annual benefit for 1st Stage in Tysons. I had some help with the counting, but if you get one of the invitations, please think of my scarred, blistering hands putting 1277 invitations into 1277 envelopes, swiping the glue stick 1277 times, pressing 1277 flap, etc. etc.
Actually it was not that Dickensian, and seriously, how can one person find so much drama in a few blisters which don’t hurt, itch, or even fester anymore?
September 24, 2012
Yesterday’s post about the 1277 envelopes apparently plunged most of you into a state of sympathy so paralyzing that you were unable to send any of the massive floral tributes that one might have expected. One person, however, was worried that I hadn’t worked hard enough. “I sent you more envelopes than that,” said the managing director of 1st Stage in Tysons. “Where are the rest?” It turns out that my spread sheet was in error (no surprise there), and I had actually stuffed 1494.
I’m having a good day today. Fatigue is less, and my excellent neighbors, used to taking a hilly 3.5 mile walk in about 45 minutes, graciously reduced their pace to 2 miles in 60 minutes so I started the day with fresh air and exercise. The podiatrist, while equally mystified by the blisters on my feet, said that I didn’t have toe fungus and that it didn’t look as if my toe nails were going to fall off (another possible fun side-effect of chemo).
I suppose that it is possible for an individual to receive better news than that she does not have toe fungus, but hearing that is enough to make me feel quite cheery.
September 25, 2012
Encountered another new word . . . although Dictionary.com doesn’t acknowledge it as a word and it is certainly doesn’t have the bravado of the last new word I learned (see the Sept. 7 post).
The result of a major research project into the different types of breast cancer was recently summarized in the mainstream media. I fearlessly clicked onto the link for the original scholarly paper.
This was an excellent thing to have done. First, when people spend all of their free time reading about a disease on the Internet, a lot of them eventually decide that they know more than their doctors. They should try reading the jack that the actual doctors absorb. I understood the first six words which were probably along the lines of “the purpose of this study was.”
But I did encounter the word — or rather non-word — “druggable” as in “druggable targets” and, better still, “druggable mutations.” I may need a new group of friends, but I suspect that by the end of the week-end at least one person I know will be 5000 words into a novella about druggable mutants. And it will be hot.
I am not going to post tomorrow as I will be observing Yom Kippur. At least sort of observing it. Since I am not going to fast, taking a break from the narcissism of writing a blog seems like the least I can do.
September 27, 2012
I have a theater ticket this afternoon for a production of Twelfth Night. It is an Original Practices production in which an all-male cast adheres to the stagecraft of 1601. Stephen Fry plays Malvolio, and it is at the Globe Theatre, as in The Globe Theatre, Shakespeare’s Globe Theatre, the real deal, the one in London.
My mother turned 90 last week-end, and my siblings, their spouses, and I were taking her to London. These tickets were part of the celebration. They are all there now in a lovely apartment rented for the week, and I am sitting here counting my blisters.
But instead of feeling as sorry for myself as that must sound, I feel relieved. The thought of even going to the grocery store by myself seems daunting; getting myself on an airplane (if the oncologist would have even approved the trip) etc. etc. is so unappealing that I am content to be where I am.
I know people who have postponed cancer treatment to take long-scheduled trips, but that never occurred to me. I have been to London before; I will go again. Chemotherapy, on the other hand, is something that I hope is a once-in-a-lifetime opportunity.
September 28, 2012
This is so traumatic, people. I fried my wig. The wig-shop ladies had told me that it was heat-sensitive, but my oven? And no, I wasn’t doing a Sylvia-Plath in the oven (since it is electric) nor was I trying to clean the beast. I was cooking a piece of trout on a salt plank. Preheat the oven to 400 degrees, open the oven, put the trout in, open again to turn the trout, open a third time to remove the fishie, eat lunch, get in the car, glance in the rear view mirror and shriek.
Along my forehead, the first 3/4 inch of hair is dried and frizzy. Since it didn’t get to the point of melting, it still does look real . . . but real in the sense of looking sun-damaged, chlorine-infused and generally overprocessed. Remember the advice about taking cookies to a cookie-exchange at your kid’s school — go buy cookies, put them in the oven, and burn the bottoms a little so that people think that you made them (advice that I never used, thank you very much). If you want people to think that your wig is truly your own hair, damage it a bit.
I did change the adjective in the first sentence from “tragic” to “traumatic” because this is fixable. The wig-shop ladies can probably trim some of the damage, or I could buy a new wig. But the wig shop is 35 minutes away in a part of town that I don’t know so getting there feels hard (even though it isn’t), and my wig was one part of this adventure that had been easy. And now it is hard. I don’t like that.
September 29, 2012
Thanks to multiple applications of SoHo brand “Special Care Leave-in Conditioner for hair extensions and hairpieces” (capitalizations, or lack thereof, are theirs), cool Velcro rollers, and perm paper cut out of gift-wrap tissue (which didn’t work very well; apparently hairdressing paper is coated with something), I have restored my wig to an A-/B+ state.
While the Special Care Leave-in Conditioner was drying (hardening), I wore my halo wig, which is badly named. A halo shimmers over your head (well, not mine), suspended in blessed mid-air. Nice, but is that really what we want from a wig? A circle of hair floating freely above our glorious baldness?
This should instead be a called a tonsure wig. A band of elastic loops around one’s head; from it a circle of tendrils, curls, and feathery bangs cluster alluring around one’s forehead and neck. One then covers the glorious baldness with a hat, not a chemo cap, a real hat.
I buy hats often, and I like mine a great deal. But I don’t wear them because I worry that I would look out-of-place, stupid, full-of-myself, etc. etc., a concern amply reinforced by my children. But once the tonsure wig is in place, it is clear that I would look less odd in an elegant brown hat, brimmed and sashed, than if I went out looking like an Eastern Orthodox monk in drag.
I probably won’t post tomorrow (unless I damage some other body part or appliance). I feel fine except for the fatigue, lack of stamina, and the chemo brain. Fortunately come Wednesday I will have another treatment, and the cell-death fun ride will begin again.
October 1, 2012
Brace yourselves for the “whomp-there-it-is” tone which the cousin from Richmond says is how I deliver good news. I have a new wig.
This afternoon I went to a workshop run by the American Cancer Society called “Look Good . . . Feel Better . . . ” In cooperation with companies that make beauty products and various organizations of cosmetologists and make-up artists, the workshop is designed to help women going through chemo deal with the aesthetic challenges of cell-death.
Okay, to whomp it down, if I write a book about this experience (and I really hope I don’t; when this is over, I want it to be over, not the start of a year-long prose-fest), it will be called Cancer Made Me Pretty. Even with the slightly cooked bangs, my wig is a jillion times more flattering than my hair has ever been. My diet is healthier than it has ever been so I am losing weight and my skin is clear and smooth. Because my eyebrows have thinned a little, I am spending more time on my make-up. I grew up in a world where a girl was either smart or pretty but never both. With chemo brain threatening my right to be in the smart camp, I am packing up my tent and moving to the pretty side (or what passes for pretty when you are 60).
So I was already feeling better about looking good, but I read on the Internet that the freebies at the workshop were great so I signed up. Who doesn’t like freebies? And there were a lot of them, ranging from Chanel-brand eyeshadow to Cover Girl compacts encompassing a range of skin-care products, blushers, bronzers, liners, pencils, and all sorts of glorious girly stuff.
Newly possessing the self-confidence of a pretty girl, I volunteered to be the model (no one else was willing to be the first to take her wig off, but once I did it, someone else did too). Although I do know the fundamentals of skin care and make-up, I did learn a few new things. First, if you are demonstrating a technique, don’t tell the participants that they are to put three drops of cleanser on their faces, then openly counting, put five drops on mine. Then repeat that with the moisturizer. “Put three drops on your face . . . one, two, three, four, five.” Don’t do that. Second, it feels really great to have someone lightly feathering the pads of her two middle fingers over your face as she smoothes the foundation. Third, smoothing foundation by lightly feathering the pads of your two middle fingers over a face takes a hell of lot more time than I am ever going to invest in my make-up.
After we were finished, in gratitude for my being such a good sport, the make-up artist opened the cabinet of donated wigs and before letting the other participants take what they wanted, she chose one for me. It is much the same style as mine, but it is quite dark in color, even darker than what my hair was back when the “girl” in “smart girl” was actually appropriate. I would have thought that the darkness would have been aging, but I was assured that it was not. I was wearing a black sweater with a white shirt, and I could see that the high-contrast of my clothes was mirrored by contrast between the dark hair and my foundation-smoothed, made-paler-by chemo skin. I will need to ask friends if it looks as good with other ensembles. Or good at all.
But to be almost blonde one day and dark brunettes the next seems so wiggy. Not sure I can pull that off.
October 2, 2012
I joked about chemo brain in yesterday’s post, and that was probably inappropriate (but then so has been a fair amount of what I’ve written so I’m not going to be overly apologetic).
In the days after my July 5 surgery I did do some solid work on the novel-in-progress, but it was the work I find the most fun, working at the sentence level, manipulating words and grammatical structures, sharpening tone and imagery. Not too much raw narrative creativity. But once the week of radiation started at the end of July, I stopped working. While I haven’t tried, I also sense that there is nothing happening in that part of my brain, similar to the creative inertness I felt in the year after my husband’s death.
But chemotherapy has added a second dimension. I feel as if my Ritalin has stopped working. Fifteen years ago I was diagnosed with ADD (without a trace of hyperactivity) and started taking meds. Now I feel catapulted back to the pre-Ritalin days. I can not not not make myself complete a task. I start to unload the dishwasher and remember that I wanted to start the laundry so I go in the bedroom to get the laundry, but on my way out I remember that I wanted to make a call so I drop the laundry by the phone, etc. etc.
Fifteen years ago I was used to living this way, surrounded by tasks that were 90% completed. But now I am spoiled. I have gotten used to living intimately with a person (i.e. myself) who puts away all the groceries, not just the perishables. When I stand up from writing this post, I will see two coffee cups in the living room. If I manage to carry them into the kitchen, I will find that the Saran Wrap, used when I packed my lunch for tomorrow’s chemo treatment, will be on the counter. Through the laundry room door, I will see that the door to the dryer is still open.
Trivial? No, not when there are ten such bits of clutter, each of them calling out a reproof to me, “you didn’t deal with us.” For years I never saw the clutter and certainly didn’t hear its voices. But now I do, and I hate it.
The oncologist wouldn’t let me increase the Ritalin dose. So I am back to relying on self-discipline to finish tasks. And, you know, that’s just not heaps of fun.
October 3, 2012
Yoga on steroids . . . literally.
Unless you’re interested in yoga, you might want to skip this, but I don’t have anything to do before the debate starts so I’m going to keep at it. My yoga teacher is a lovely, gentle, insightful, not at all steroidy person. A year and a half ago she was taking courses to be able to teach another kind of yoga; one of the assignments was to find someone who had a poor mind-body connection and to teach them for an hour, trying to understand what it is like to feel so disconnected from your body. Was I ever the perfect candidate for that. I was so intrigued by our session that she and I have been on a journey together ever since. We almost never do any of the classic poses, but sometime last winter I suddenly realized that I no longer hated my body. I don’t love being overweight, but that, I now know, is not my body’s sole defining characteristic.
Of course, the irony of this summer has been that here I was, finally in touch with my body, able to listen to it, occasionally even tend to and nurture it, and what happens? I get cancer.
Today I went directly to yoga from my chemo treatment and its 10 mg of I.V. steroids. During the opening guided relaxation I was able to focus my attention on different body parts, something I had trouble doing 18 months ago, but I felt very distant from anything that was happening in my body. I was back to a me/body distinction. “I” was observing “it.”
That was the limit of the connection. My teacher asked me to do cat-cow stretches until I felt ready to go into the next move. A week ago I could have felt that readiness, but today whatever messages my body was sending I couldn’t hear.
Since I was on steroids, I gave my teacher a chatty play-by-play of everything that I was or wasn’t feeling. At the end, she, this lovely, gentle, insightful person, said, “yoga is about self-awareness and observation; you were self-aware and observant. That was yoga.”
And certainly a lot easier than holding the plank pose.
Debate still not on, so I will add another yoga story. My exercise studio rents space in a very large church which is down to about three members. It pays its bills by renting space to us, a music school, a pre-school, and a Korean congregation of some denomination. A number of years ago we added a yoga class but the Board of the church said that the class had to be stopped because yoga was “insufficiently Christian.” So the class schedule now includes “Flowing Strength.” It also includes Zumba, in which we post-menopausal, aging ex-soccer moms shake our booties and shimmy our bosoms in an unhappy (but You-tube worthy) imitation of hot Latin chicks. I will defer to an actual Christian about its religious sufficiency, but it certainly is fun.
October 4, 2012
In romance publishing, we talk about heroines (in other people’s books, of course) who are TSTL — too stupid to live. Well, the heroine of this little journal is TSTS — too stupid to sleep.
I find it difficult to sleep the first night after a chemo treatment because of the steroids. My usual Ambien protocol is start with half a little pill (for a dose of 2.5 milligrams) and then take the second half if that doesn’t work. My oncologist said to go crazy and take 10 milligrams.
So last night at about midnight I took a full 5 mg pill, dozed for a bit, then woke, and could not go back to sleep. I read, I watched T.V., I fretted. I felt weary, but not at all sleepy. So at 2 am I fumbled through the sickroom clutter on my nightstand for the Ambien bottle to take a second pill.
Only to discover that it was the Ritalin bottle. At midnight I had taken a stimulant that I never take after 4 pm. I have no idea how this happened. The Ritalin is never in the bedroom; those pills are white, the Ambien is purple.
The reason for doing chemo is to increase my chances of living past 90 as the women in my family do with astonishing regularity. But if I can’t manage my meds at 60, I might well do myself in long before that.
October 5, 2012
I am still feeling okay, but oddly serene and detached . . . and even more oddly without anything to say.
October 6, 2012
As expected, the woes set in this morning, the aches, the uneasiness, the fatigue . . . even a new blister. But my daughters are here; there’s nothing I need except encouraging words.
October 7, 2012
Today has gone much better than I would have expected. I haven’t had any bone pain yet, and yesterday’s dreary flu-like symptoms eased last night.
It could be the various alternative treatments (i.e. the woo-woo stuff). During both my reiki and massage session I had a lot of strange spasms which the therapists said were caused by a release of energy. I went to a different acupuncturist, and her treatment stimulated two strong hot flashes which she said were caused by a release of heat. So maybe releasing enough heat and energy to have gotten the Hindenburg at least off the ground accomplished something.
Or it could have been fresh air and sugar. When I was feeling very low yesterday, my older daughter shoveled me into the car for a convertible ride which ended with a visit to a frozen yogurt place. I’m sure that a small serving of the “original non-fat tart” had more sugar in it than I had all week. I’m not going to rule the restorative powers of that.
October 8, 2012
I may not be very good at processing data, but I generally expect that, as long as I go on turning my homework in on time, good things will happen to me. I am surprised when bad things happen. When a guy with a gun once kicked in the screen of my motel room and started demanding my purse, my first thought — honestly — was that he had the wrong room. (Then I started shrieking as mindlessly as if I were tied to a train track until my quick-thinking husband pulled the fire alarm.)
But I am really surprised at how good I feel today. The bone pain, which has been so distracting during the other cycles, is non-existent. I had enough energy to go for a 50-minute stroll this morning. I am quite pleased.
Of course the last time I told my sister that I was doing better than expected, she encouraged me to hop on a plane for London. Ah . . .no. . . “better than expected” isn’t that. I want to assure all of you who are assigned to help/cook/babysit this week that I still look forward to everything you’ve offered to do; I’m just less miserable during that anticipation.
October 9, 2012
I feel only slightly worse than yesterday which is very very good news.
I did have to remove the stainless steel press balls attached to the cartilage of my outer ear. Stainless steel brass balls? When the acupuncturist mentioned putting them in my left ear, I wondered if I were entering an audiologist’s version of Fifty Shades of Grey. But they were very tiny silver dots embedded in circles of clear adhesive. She used tweezers to position them in three carefully positioned spots. I was to leave them in until Wednesday morning unless my skin started to react to them. My ear started to tingle a bit last night so I pulled them off . . . as I clearly have more sense than the heroine of Fifty Shades of Grey.
October 10, 2012
Definite and rather unpleasant tingling in the bones, and the fatigue kept me from walking this morning . . . but the big issue today is a building frustration. Am I truly going to spend one more day accomplishing nothing?
I have helped enough people after surgery or during illness to know that the desire to do things for yourself is often counterproductive. It can compromise your recovery, and it can make the people helping you question their role. Sometimes the best thing you can do is shut up and accept the situation graciously.
I had one friend here all day yesterday, and I contentedly watched her being productive. This week’s live-in babysitter/nanny/nurse arrives soon so I shall resolve to let her energy and productivity take the place of mine (which the Google translation feature would render as “shutting up and taking a nap.”)
October 11, 2012
I’m not sure if I have felt better today, but I’ve certainly had an easier time of dealing with it as the “cousin-in-residence” has arrived to spend five days taking care of me, distracting me, listening to me, amusing me.
She (Marjanna) is not actually a cousin. In fact, if I had been a naughty girl when I was 15, she could have been my daughter. She is a friend, a fellow writer, one of the many generous people helping me through this.
October 13, 2012
I feel strangely light-headed and dizzy today, but Marjanna and I have been joined by two other writers for a slumber party so I don’t have to worry about being alone during any wobbliness.
More disconcerting is that increasingly over the last few days I have lost all interest in writing, in shaping my experience through prose, in selecting words, in crafting sentences.
October 14, 2012
I have decided that the pathos manifested in yesterday’s entry (fortunately Caring Bridge has allowed me to delete the final two most sniveling sentences) was caused by the codeine in Tylenol 3. Until this week I had never taken more than 1/2 pill a day. Toward the end of this week I was taking 1 a day (my script allows 2 every six hours), but yesterday I took two. And I didn’t really need it for pain; I just liked the increased sense of well-being it created.
So I am hopeful that I will soon feel more like myself. A romance writers’ mini-slumber party would provide plenty of material to someone who liked to write, and I trust I will be such a person again soon.
October 16, 2012
Physically better, emotionally stronger . . . cognitively I’m not so sure. I planned on saying that my joy in writing has not returned. I have, at various times in the past, felt as if writing a novel was . . . well, duh . . . work, a job. But I’ve always enjoyed shoveling the words.
And I thought that that was still missing. But as I was waiting for the computer to wake up five minutes ago, I wrote a thank-you note, and it felt good. So I am more hopeful even if this entry is rather humdrum.
But I don’t like being reminded of my humdrum-ness so I will probably take a several-day break from posting here. My next treatment is October 24 so I expect to feel better each day until then.
October 17, 2012
Avoiding the symptoms of humdrum-ness/malaise/budding depression is not a solution. I’ve been to this rodeo before. So yesterday I started taking a mild anti-depressant, one that I have taken before.
I’m glad I did this now. Getting the script involved multiple phone conversations and a little Internet searching to be sure that this med would not interfere with the chemo or with the hormonal treatment that I will start when the chemo is over. If I had waited until the blues had gotten darker and stormier, those calls might have felt overwhelmingly hard.
October 18, 2012
In case you were wondering, drying baby shampoo feels strange.
Back when I had hair that was permed, colored, high-lighted, occasionally low-lighted, and generally over-processed, I used ridiculously expensive shampoo and conditioner (although did they really have to call them “anti-aging?”). (I’m not at all sure about the placement of those four consecutive punctuation marks. I hope the lady next door can clear this up for the rest of us.)
Anyway I always left each of those products in my hair for a few minutes in hopes that at least the price tags would saturate my damaged locks.
I still do have some hair. A Kansas wheatfield during the worst of the Dust Bowl is probably too positive a metaphor. More accurate would be to say that I look as if the neighbors (but not the lady next door who can punctuate anything) caught me cavorting with enemy soldiers.
Per instructions I now use Johnson’s Baby Shampoo on my head, but of course there is no reason to leave it on my hair as 1.) the remaining 1/2 inch bits of filigree are not processed at all, and 2.) Johnson’s Baby Shampoo does not come with a knock-em-dead price tag. Several times I have caught myself not immediately rinsing simply out of habit. This morning, however, not only did I not catch myself rinsing immediately, but I skipped that step altogether. I rubbed my head with a towel without looking in the mirror (the whole collaborating-with the-enemy isn’t a great look so one avoids mirrors). Only after I was dressed, did I realize that my head felt slightly crackly.
I’m sort of thinking that the anti-depressant is working.
October 19, 2012
I got my first birthday gift of the year last night from my friends in my widows’ and widowers’s group –a pair of fuzzy vermillion bed socks. When you think about bed socks (which I’m sure you do frequently), they may seem like a seriously old-lady kind of gift, but the members of this group unfortunately know a great deal about cancer treatment and are well aware of how dried and cracked one’s feet can get. So I spend the night with the socks holding in one prescription topical steroid, one OTC anti-fungal, and a thick slather of Bag Balm.
I’m happy to have well-moisturized feet today as I have plans that you don’t have to be on an anti-depressant to feel cheery about. As another birthday present, a friend of my younger daughter arranged for the girls and me to have tickets to the annual White House Garden tour.
“Why does she keep mentioning her birthday?” you may be asking. “Is she trying to make me feel guilty because I haven’t already mailed a lovely gift?”
October 22, 2012
In Mrs. Obama’s White House vegetable garden, green and purple lettuces are planted in a pattern of diagonal stripes. At a breast-cancer conference Saturday morning I was encouraged to take home a majestic flower arrangement. Saturday night I had a cocktail and a glass of wine, my first alcohol in three months. Sunday afternoon my sewing friends brought me an extreme chocolate birthday cake. I also received comforting gifts of tea and a cozy blanket. It was a whole weekend of lovely birthday celebrations.
(Although . . . by “was encouraged to take home” the flowers, I mean that I piped up “Oh, it’s my birthday; I’ll take them,” and no one objected.”)
October 24, 2012
My last chemo treatment is this morning, but I don’t want to hear happy talk, that this is wonderful news, that there is now an end in sight, light in the tunnel, etc. etc. Of course it is wonderful, but don’t try to cheer me up. I want commiseration, wailing, garment-renting. In fact, if you happen to pass by the grave of an ayatollah this morning, cast yourself upon the ground and wrap your arms around the headstone on my behalf (in your leased burka — “isn’t that what she means by renting clothes?”).
Ideally an anti-cancer drug would kill cancer cells and only cancer cells. We aren’t there yet. My drugs kill (or interfere with the ability to reproduce) fast-growing cells so your hair follicles, red blood cells, white blood cells, etc. give up the ghost along with the cancer cells. Your body produces more of the good cells; hopefully there is no mothership producing more cancer cells. This is the reason for spacing the treatments three weeks apart. You have some time to build up some of those good cells before they are blasted again. But three weeks doesn’t get you back to where you were at the beginning.
I am crabby because I am going into this final treatment in a much lower place than when I went into the second and third treatments. Thus I anticipate some very tedious days ahead . . . and I am annoyed when people start chirping, “oh, now you’re done.” Because I’m not. The worst is still to come.
My oncologist was perky and cheerful on Monday. “You’re doing great.” This is great? What about those poor suckers who are doing just average, much less doing badly? She did acknowledge that I would need a month to recover from this cycle. But in a month I will be able to visit the dentist, get a flu shot, and have my nails done. “And think,” she continued, “how great you will feel this time next year.”
October 26, 2012
Didn’t post yesterday because side effects set in early and hard. Fatigue and, for the first time, nausea. But the local troops are rallying, and the St. Louis cousin is trying to change her flight so she can get in before the weather.
October 28, 2012
If you want to be entertained, you should scroll down through the guestbook to the October 25, 5:18 am entry from Donna. She’s the cousin from Richmond; she picked up the wit-and-humor backpack that I seem to have dropped. I do have great cousins.
And great siblings. My brother and sister (along with my youngest niece and yet another cousin) spent the week-end in Kansas moving our mother into assisted living. It was a lot of work, and they did my share without ever mentioning that that was happening.
And great friends and great daughters . . . and a body that aches.
But at the moment we still have electricity. Can’t complain about that.
October 30, 2012
We lost power at 4:37 pm on Monday afternoon, but my cousin Janet and I are both super-prepared Girl Scouts so we are doing fine. Nice cozy fire in front of our chairs and big blocks of ice in the ice chest . . . and a gas cooktop and car chargers for our phones and iPad. What more do two girls need? (Except some hair and white blood cells, but one of us has those.)
I can read email on my phone, but to answer I have to enable the mobile hot spot on the phone and fire up the computer so don’t fret if I am not answering emails.
October 31, 2012
The power came back after 23 hours. Cousin Janet and I did charge our half-drained cell phones in the car, but we had been so careful about our batteries that we didn’t need to try her husband’s voltage converter that would have supposedly allowed us to charge the laptops through the cigarette lighter. Seemed to me that there was a good chance that we would blow up the computer or the car . . . but not ourselves. Girl Scouts don’t blow themselves up.
But I am certainly flattened. Today is the first day in this adventure that I have spent in bed. Sitting in the Major Dad Recliner would require more energy than I seem to have. So Janet scrubs my refrigerator and organizes my cabinets, and I let her.
November 1, 2012
I have been content and almost comfortable . . . as long as I stay in bed. It is so easy to lie here doing nothing that I wonder if I will ever bestir myself again.
So far today Cousin Janet has made white chili, squash-apple-rutabaga soup, and Brussel sprouts with Japanese noodles and peanut sauce. Perhaps the soothing sounds of her clattering in the kitchen are what is making bed rest pleasant.
November 4, 2012
My sister asked if it had helped to know that I was recovering from my final treatment. Well, no.
There’s no question that some of the side effects have either abated or become familiar friends that one knows how to manage. The bone pain no longer etches out the shape of my skeleton, and I blast the first sign of redness with a steroid cream from the dermatologist so I can forestall those blisters that troubled me so much in September.
But the general achiness and the fatigue are worse . . . and my attitude about the fatigue is dramatically worse. Until now I have been patient, at least for me, with my limitations. (And those of you who are thinking back to clawing frustration of some previous entries, please note the “at least for me.”) But with the “end in sight,” I am restless and annoyed. I am so tired of feeling impaired. Friday I found myself thinking, “well, at least I’m two weeks through” when of course I was only ten days.
Furthermore since I had assumed that the recovery from this cycle would take three weeks, I started loading up my calendar with appointments and plans starting at two-and-a-half weeks from my final treatment. Almost all of these can be changed or the responsibilities shared. But to do so involves making phone calls during business hours, and do you know how hard that can seem to be?
My daughter is also noticing that I am struggling more cognitively. When I asked when she was going to return to the apartment she shares with her sister, I called it a hotel (and believe me, with the exception of usually having hot water and heat, their place doesn’t have a great deal in common with a hotel). I can’t at this moment recover the name of the anti-depressant that I am on.
But whatever that med is, it is doing its little job. I am restless, annoyed, frustrated, and impatient, but not depressed. That is huge.
November 5, 2012
I resolved, when I begin this, that I would not detail the various inappropriate things people have said and done. Even when a remark is inappropriate, insensitive, or even painful, the speaker’s heart is usually in the right place. So I try to focus on that. I usually fail at first, but sooner or later I get there.
As I am at a plateau, feeling pretty much the same as yesterday, I am going to focus on things people have done right, beginning with two “speech acts.”
The first has nothing to do with cancer, but I am wildly grateful. The girls and I voted more than two weeks ago. That day some young volunteers from the Obama campaign stopped by my house. When I displayed the “I VOTED” sticker on my shirt, one of them entered something on her cell phone. Since then I have not heard anything from the campaign, no phone calls, no visits. What an excellent use of technology, saving their resources and leaving me only with calls from pollsters, PACs, and other robo-calls that I hang up on so quickly that I don’t know who the calls are from. Ah, the joys of living in a battleground state (although it’s comforting to remember that ‘battleground’ is only a metaphor; at key points in Virginia’s history there was nothing metaphoric about the battles).
Such silence is probably not a good option in dealing with your friends who have cancer. I realize that it can be hard to know what to say, but a friend recently nailed it, at least for me. “What you’re going through sucks,” she said. “It’s horrible. But I’m so proud of you. You are handling it so well.”
I liked that she both validated how crappy this is and also gave me props for handling it well. If she had focused only on the crappiness, I probably would have wondered if I were coming across as a pathetic victim. Or if she had only gone on and on about how well I was doing, I might have felt as if my ordeals were being diminished. So her hitting both was exactly what I found comforting.
November 7, 2012
I was discouraged today because I had hoped to be feeling better. But I went to an election party last night, ate rich food and some sweets, and stayed up too late when I came home. I have decided that if I hadn’t done all that, I would indeed feel better. So I am declaring that I am making progress . . . even though I actually still feel like crap.
November 8, 2012
I refilled the soap dispenser.
After loading my breakfast dishes in the dishwasher this morning (several remarkable facts in that phrase — that I was actually taking care of the breakfast dishes in the morning not late in the afternoon and that it was me doing it, not one of the neighbors on a tidying-up mission), I noticed that the dish-detergent dispenser was low. I got out the funnel and took care of it.
A week ago that would have seemed like extreme science fiction.
I am an all-or-nothing person. Either I am pet-rock inert, or I push myself too hard. In the latter mode, if I wake up feeling like a “5” in energy and well-being, I do chores and such (as in going to election parties) until I am back to feeling like a 3.5.
Starting today, I am writing down when I do something that I wouldn’t have done the day before so that I have a way of keeping track of my progress beyond simply how I feel. I’m also hoping that the list will keep me from overdoing things. Having written down three things this morning (the soap, putting away the pills that I no longer need to take, and something else of such global importance that I can’t remember it), I stopped myself from clearing off a counter.
In an ideal world I will not share this list with you as it will no doubt be tedious . . . but don’t count on it.
November 9, 2012
We don’t have much interest in convalescence in this country, do we? Dr. House figures out the right medication, the commercial comes on, and bingo, it is three months later and the patient is outside shooting hoops. Victorian secondary heroines were allowed to go for months and months, all pale and interesting on the morning-room sofa, but we who are not creations of authors paid by the word are either sick or well.
I have rewritten that paragraph, stared at it, and now conclude that it is unjust. Yes, I am still smarting from one insensitive suggestion about what I “ought” to be doing, but everyone else has been gentle and understanding, expecting very little of me.
Obviously the issue is my own. I don’t have any patience with convalescence. I worry that if I tell people that I am feeling better every day, they will assume that this little story is over. Why do I need that? Because I am having trouble with the notion of a slow recovery, and so I need other people to believe in it for me. That’s nuts. If I want allowances to still be made for me, I need to continue to make them for myself.
I do feel better today than yesterday. An errand that felt impossible on Tuesday feels manageable today. This is good.
November 9, 2012
Quick update to this morning’s post — the supposedly do-able errand loomed too large even though it is one store ten minutes away two items. So I asked my neighbor to drive me and haul the boxes.
November 12, 2012
The fatigue that I continued to feel all week-end has been demoralizing as it does feed my ingrained image of myself as someone who is lazy. I know . . . I know . . . I’m not . . . but these embedded messages smolder long despite all efforts that reason and experience make to extinguish the fire.
The doctor predicts that the fatigue will lighten in another ten days. So I stay in my chair . . . even though I struggle not to label myself a quitter. After all, when the oxen dies, aren’t we Kansas girls supposed to hitch ourselves to the plow?
November 14, 2012
Reinforcements arrived Monday afternoon, another Kansas plow-girl, Cousin DeeEllen (one of Cousin Janet’s sisters) back for a second stint of field work. While Cousin Janet is a cook, Cousin DeeEllen would rather clean and organize so she has been reclaiming my house from sick-room debris, the baskets of pills and skin creams, the piles of papers I haven’t had the energy to deal with, the cascading mountain of leftover containers that attack anyone entering my pantry.
I am enough of an extrovert that I do get energy from having someone else in the house all the time, but I am very hopeful that my increasing “get up and go” will survive her departure this afternoon.
And if you are envying me for my cousins . . . well, you have no idea. There are two more Kansas plow-girls, my cousins’ older sister and mine, as well as my two paternal “girl cousins.” The paternal ones aren’t Kansas plow-girls since their dad was in the Navy, but being Navy kids probably left them with their share of baggage to live up even if it doesn’t involve dead oxen. All four have offered to come, but it would be nightmarishly hard for them to come except on week-ends, and that’s when my daughters can come . . . who are neither Kansans nor military, but who know that they need to act as if they are.
November 16, 2012
Getting better . . . is there any more delicious feeling? Relief, gratitude, joy. Sometimes I think it is worth a two or three day bout of something in order to be standing on the beach and feel the warm tide of well-being lap over your toes, swirl around your legs, then lift you up in an easy drift . . . although that metaphor falls apart on me because, true to my Kansas roots, I am no fan of the ocean. Putting salt in water, come on, whose idea was that?
Of course this has been more than a short visitation by a viral bug, and I need to remind myself that I am far from being 100%. Fortunately, Cousin Janet introduced me to the T.V. show The Mentalist, and every time I do something as ambitious as climb the stairs several times, I watch an episode as a way of keeping myself in the Big Chair for 42 minutes. I’m midway through Season 2. Hopefully I won’t need this opposite-of-a-crutch (as it keeps me from walking around) before I catch up to the current Season 5.
I need to add a P.S. — that I spoke disservingly of my older sister and of Cousins DeeEllen and Janet’s older sister. As older sisters, the two of them would not have waited for the oxen to die. As soon as the beasts started to look a tad peaked, they would have started slinging the leather harnesses across their shoulders.
November 21, 2012
So much to be thankful for this year . . . routine mammograms . . .living close to excellent doctors and medical facilities . . . an insurance company that pays and pays and pays . . .
My daughters who have been helpful and cheerful, never making their anxiety become my problem . . . Cousins DeeEllen and Janet and As-Good-as-a-Cousin Marjanna . . . my much loved husband who left us so well provided for that I never had to pause about co-pays, acupuncture, massages, and a second wig when I fried the first one . . my nearby friends who provided much practical help and wonderful distraction. . the rest who sent cards and good wishes . . . my siblings who have handled everything with our mother . . .
And feeling better . . . being able to make pumpkin pie this morning and prepare the stuffing . . . thinking about a quick trip to the grocery store without needing the accessories of a science-fiction novel . . .
Finally I am thankful that I am me. I never thought that I would get breast cancer, but because I am the sort of person who goes with friends to their doctors’ appointments, I understood the diagnostic procedure and knew which surgeon I wanted to use. I am proud of how determined and unwavering I have been. Almost exactly four months after my mammogram I had completed surgery, radiation, and chemotherapy. Many women let that much time elapses as they figure out a treatment plan. This is a progressive disease, and I wasn’t going to give it a chance to progress. I also am glad that I know myself well enough to know when I needed an antidepressant and that I have so many ways of entertaining myself while rooted to a chair.
I am still a long way from being back to normal. I don’t have much interest in reading a book, much less writing one. I rely on several episodes a day of The Mentalist to force me to rest, but the Big Recliner will go back to the basement next week. I will also go back to exercise class and start regular walks again.
So from now on I will only post when I have news; that will usually be after doctors’ appointments, I assume. Writing this has been important to me, and I am too much of a professional to think of writing without an audience so I am very grateful to all of you for being such loyal readers.