Glow-in-the-Dark Susan
That's me lying on the radiation table. (My arm really isn't as 'meaty' as it looks!) . The facility has five of these machines and each one treats between fifteen and twenty patients every day, five days a week.
I've had fourteen of the planned twenty-five 'zaps'. Actually, so far it's been fine. The system is very well run (Amazingly, this is one of the few times I'd be hard-pressed to suggest any improvements.) Appointments are seldom delayed and the people are capable and invariably upbeat. I haven't experienced any negative side-effects yet, but I've been told I can pretty much drop in any time for advice or prescription needs.
The major chemotherapy is done now and I've progressed to a 'maintenance' schedule. I had a somewhat difficult time with the second four-part series of chemo. My white blood count went down to dangerous levels after the first treatment with Docetaxel and Herceptin. I was admitted to hospital and dosed with Neupogen to rebuild the blood and I.V. antibiotics every eight hours to protect against infection. All very nice, but I don't want to go back there any time soon.
They reduced the dosage on the Docetaxel for the next treatment and ordered subcutaneous Neupogen injections for seven days after each subsequent chemo treatment. I was supposed to give the shots to myself but my neighbour Rose did most of them for me. When Rose went out of town for a few days I finally 'screwed my courage to the sticking place' and did the injections myself. It wasn't too bad. I developed a rash though....and by 'rash', I mean
RASH. Funny, I told Rose that my face looked like a baboon's bottom. "No it doesn't!" Rose said, and all the while the silly grin on her face was saying "You're right! You're right! It
does look like a baboon's bottom!" It was ugly alright, but not disabling and my family still loved me, so 'no big whup'.
The circulation in my hands and feet was affected too and that's a problem. My fingers and toes are still numb (I'm told this could last a year.) The nails of feet and hands look pretty disgusting and although they haven't fallen out yet, it remains a possibility.
They reduced the Docetaxel dosage to 75% for the third treatment. The rash got much worse. My face and hands were bright red and my eyes were red and watery. The doctor thought it might be an escalating allergic reaction. I was warned that the next treatment might do irreparable harm, that I might be permanently unable to fully close my eyes. They didn't seem too anxious to continue, suggesting there were alternatives we might explore. Ignorance is bliss -- I told them I was prepared to take my chances. We carried on and the final Docetaxal treatment didn't do much more damage. I did, however, develop another annoying side-effect. This one was so alarming that I kept my mouth firmly shut about it; I didn't want anyone jumping to the conclusion that cancer had spread to my brain. Every waking moment for at least two weeks I heard music! It started out with an endless loop of Nancy Sinatra singing "These Boots Are Made for Walkin'", then it switched over to a very bad bit of music with even worse lyrics. If I concentrated I could switch it over to either The Star Spangled Banner or O Canada for a little variety. Thank goodness that's over!
I'm still on chemo - IV Herceptin now, every three weeks - and having radiation treatments five days a week for five weeks. My face is back to normal, my hands are still a little 'stained' (looks like a wide-spread birthmark). After radiation I think they said they'd give me a month to recover and then surgery in early July. Ugh. I'm scared about that -- thinking of hitchhiking to Whitehorse instead....
Labels: cancer treatment, chemo side-effects, radiation
Long Time No See...
So....I'm alive. I'm actually feeling quite well. I've had a bit of difficulty, but things seem to be improving. I was scheduled for eight rounds of chemotherapy, spaced at three week intervals. So far I've had seven. The first four treatments were with Doxorubicin and Cyclophosphamide. I had an unexpected reaction, the doctor saying "That's not a side-effect with these drugs". I don't blame the doctor - everyone's unique and I guess I'm no exception... I spoke up right away, telling them that I felt I had 'swollen like an over-ripe tomato'. (How can I say this delicately? I can't. ) I experienced pretty severe internal and external fissures and suffered quietly for close to four months before I cried in public. Then they finally believed me!! I must say, I was amazed by the reaction. I'm not a crier, so it really took me by surprise. Talk about TLC! It was almost embarrassing, the attention I got. They called a specialist who came from his office to meet me at 'Emergency' within the hour. The nicest man! Love him. His name is Dr. Ahmer Karimuddin - young enough to be my son, but absolutely confidence-inspiring. Anyway, God bless him, his parents, his brothers and sisters and his descendants for all time. He diagnosed my problem and put a treatment plan in place that helped immediately. After that meeting things were definitely looking up....until...
The fourth through eighth chemo treatments are with Docetaxel and Trastuzumab. They're the ones with the side effects. The doctor cautiously started me on a seventy-five percent dose. They seemed to be expecting the worst because they had adrenaline, etc. loaded and ready to go when they started the I.V. I was fine - none of the reactions they were looking for. Seven days later, though, I obediently phoned the on-call emergency oncologist, as instructed, because my temperature had spiked. My white blood count was "dangerously low" - down from a normal 4.0 , below an acceptable 1.0, to .02. They admitted me to hospital and put me on intravenous antibiotics every eight hours (to combat any possible infections) combined with daily Neupogen injections to stimulate the bone marrow to produce white blood cells. It wasn't a horrible experience, but it wasn't pure joy either. A hospital's no place for sick people. And the food is disgusting!
I recovered nicely from all that. And I'm pretty good right now. My dear little neighbour, Rose, is a nurse and she volunteered to come over after chemo treatments six, seven, and eight to give me Neupogen injections on post-chemo days four through ten. It sounds gruesome (in the stomach), but actually it's not bad at all. It seems tummy flesh is nearly senseless. At least mine is!! The Neupogen causes some aches and pains (so far easily handled with Ibuprofen). The pain to the pocket-book is something else, but I'm lucky there too with our excellent medical coverage.
There's more scary stuff to come. I'm nervous about radiation. There'll be twenty-five treatments I think, five-days a week for five weeks. I'm warned that my phosphorescent Irish skin makes blistering a distinct possibility. Then radical surgery. And a lung biopsy via my throat.... Doesn't sound like a lot of fun, but "Yard by yard, life is hard...inch by inch, it's a cinch". I'll probably get through this o.k. I have wonderful support.
I'll tell you some nice stories soon, but tonight I'll just show you my arm! It doesn't really look so bad in the picture, does it? The larger bruise is from the latest chemo i.v. The big scratch is from rose pruning (I'm not to go near roses anymore, warned that I could get blood poisoning at this stage.). The mark near the elbow crease is the remains of an improperly sterilised hospital i.v. and the small red spot in the middle is a piece of flesh removed by the clothes dryer (I have no idea how that happened!)
Update
Famous last words: "It's not my plan to let cancer take over this blog." Unfortunately, cancer took over me and I decided to spare you the minutiae of my misery. It's been quite a while since I last posted, though, so I'll give you to a brief update.
The process was agonizingly protracted. I had a diagnostic mammogram and on-the-spot biopsies on August 1. Immediately scheduled for a mastectomy, a subsequent CT scan ruled that out. The CT scan revealed a suspicious area in my lungs. One test after another followed.
Have you ever watched a Zamboni machine clear ice? It's a large, lumbering contraption that moves slowly around an arena, scraping, spraying, and resurfacing the finish. Waiting for the endless tests, I felt like I was lying on the ice, hearing the machine approach ever-so-slowly, knowing it was about to run over me. Then I had to lie still and wait for the next pass. Pass after pass. Unpleasant, and finally quite morale-destroying. There was a bone scan, a heart scan, ekg, and numerous blood tests. Chemotherapy treatment was scheduled and then re-scheduled when I told the oncologist that I'd been coughing for twenty-five years and that only last year I'd had lung function testing and an x-ray. The old x-ray threw enough mud onto the picture to prompt another chemotherapy re-scheduling in order to allow time for a bronchoscopy. Now
that was an unpleasant test! I saw the respirologist for a post-op appointment yesterday and I think he explained it partially as "You have an interesting redundancy of cartilage..." Whatever, they couldn't get a sample in the area of interest. The I.V. drugs administered are supposed to render one unconscious and unable to remember the procedure. The I.V. was placed in my arm at least three times; I guess I coughed it out at least once because I have a distinct memory of waking and looking at a screen that resembled a simulation of the Martian landscape. I also recall choking and gagging. End result of the test, an inadequate sample but nothing abnormal in what they did retrieve. I came away with giant cold sores on top and bottom lip, across my tongue, down my throat and possibly in the lung. I'd also bitten my tongue rather severely. I ran a fever of 39.7 C and had serious failure in my ability to concentrate. That was September 23. Perhaps there was a lingering effect of the 'forgetfulness' drug because I really wasn't thinking straight again until the 30th. I visited the oncologist again on the 26th and at least had enough of my wits about me to enquire if the bronchoscopy might have suggested sarcoidosis. (My mother had had sarcoidosis and there's some suggestion of a possible familial connection.) Sarcoidosis isn't malignant. (I don't have a clue what it is, but it's not as intimidating as lung cancer.) Finally, after considerable discussion back and forth the oncologist (Dr. Vanessa Bernstein) announced that for the moment "we're going for the cure". Future events may change that, but right now the chemotherapy is tailored to hopefully eradicate the cancer.
There's a long haul ahead - about fifteen months to begin with. Months of chemotherapy, followed by radiation plus chemotherapy, and finally a mastectomy and lung biopsy.
I had the first chemo treatment on Tuesday, the 30th, and am pleased to report that it wasn't too traumatizing. The anti-nausea regime available today is truly wonderful because I've had very little discomfort so far. On days seven to ten post-chemo one is apparently at great risk of infection due to suppresion of the immune system, so I'm nervous about that. And my hair will be falling out in about a week.
Could there be more fun?
Ah well, I've got my wig on hand. When the hair starts coming out in clumps I'll make an appointment to get the remains shaved off and have the wig fitted, steamed and styled. It's not a bad match to my current colour and not too 'wiggy' looking. I also bought a cute little sleeping cap, a cloche, and a variety of pirate-style bald-lady scarves. (If I have the courage I'll post a picture later.)
And as Forrest Gump would say: "That's all I've got to say about that."
I'll try not to put you through too much more of this in the future.
Bright SidesMy dear family has been wonderfully supportive. Every vaguely positive medical report has been greeted with enthusiasm. My little girl drove all the way from Los Angeles to be here for me. My neighbour Rose, an ER nurse, came off all-night shifts and insisted on accompanying me to the surgeon and the first chemo appointment. I've had lovely surprise packages from Sharon and Ute, Debra and Maxine and Clare. Debra's little girls sent me delightful 'get well' cards. And I have some hope that this ordeal won't kill me.
It's not my plan to let cancer take over this blog... Sorry to be "Debbie Downer" (as my daughter would say). I'm just going to post the latest news here because there are a couple of kind souls who've sent me such nice letters and I haven't written back. I hope you'll understand.
I went to the oncologist last Friday (the 15th) and he says it's advanced breast cancer and a mastectomy is advised, plus some lymph node removal. He does more lumpectomies than mastectomies but in my case it doesn't seem to be an option. Today I got an 8:15 am call from the CAT-scan booking department, telling me that the doctor had ordered a scan for completion "no later than tomorrow afternoon". From that I would infer that the mastectomy is tentatively booked for a pretty near date. Of course, that would be assuming that there's not excessive spread revealed by the cat scan.
I suppose I could find something to be thankful for whatever the scan results. If the surgery's a 'go' it would mean that the prognosis seems more hopeful. However, if it's a 'no go' I would avoid an ordeal and not be subjecting my body to excessive trauma. Sometimes I wonder if surgical intervention really is helpful - remember the old joke about the Irish woman at the Pearly Gates ? "I was at death's door and the doctor pulled me through!"
My mother was diagnosed with breast cancer. She went in for a biopsy and the hospital resident examined her and said "Your doctor's a respected specialist, but there's nothing there". They went ahead with the biopsy and found cancer, recommended a mastectomy. The next day, they decided 'no mastectomy' because it's Cancer IV. So they opted for radiation, forgot (really!) all about her for over a month, then did two courses of radiation. A year later she was in the Cancer Clinic for followup and asked the doctor there how she was doing. Now, before I continue let me explain that my mother's own doctor had decided to withhold the entire story because he knew she was fragile. The doctor in the Cancer Clinic ignored that and told my mother "I think you deserve to know. Nobody expected you to come out of the hospital last year; a quarter of one percent survive the first year..." Then, in response to 'how long?', she shrugged "Two months?" I think her name was Dr. Ellison. Damn her. I cold-bloodedly decided that I would beat her up after my mother had died. (I'm not normally a street fighter, you know...) My mother promptly went into a major depression, probably lost over sixty pounds, and was back in hospital dying. They brought food to her bed while she slept and took it away while she still slept. She became quite disoriented. My sister made the decision - "We have to bring her home. They're not doing anything for her here." So Mum came home. She was ninety-five pounds and the one doctor I trusted said we were 'on the home stretch'. I became the chief care giver, reading diet books and doing the opposite of what was recommended. I didn't allow her to stop trying. (My sister said that Mum told her "Susan would have made a good Nazi." I'm so proud...) Well, it doesn't matter. I gained weight myself with demonstration eating, but I also got my Mum up from ninety-five pounds to a hundred and forty-four pounds. And she lasted another nine years, in spite of the damned doctors. You know what killed her? Depression. She made contact with the Hemlock Society (a suicide group) and decided to stop eating. And she issued a DNR to the doctor. In hospital one day she coughed and her long-standing cariac arrhythmia stopped her heart.
And on that negative note, I am off for my Cat Scan tomorrow. I feel like punching someone in the nose. A guy butted in ahead of me in line at Costco today. He doesn't realize how lucky he was. (Think
Dirty Harry - "Go ahead, punk...make my day!")
Even horrible experiences can have good moments. It's amazing how kind people can be.
Sharon Sahl is a lady I met online. We've exchanged a couple of letters, but she barely knows me. I owed her a letter and I didn't have much 'write' in me, so I sent the briefest note explaining that I was waiting for biopsy results. Look what she sent me! And the nicest accompanying note... Thank you so much, Sharon. Here's a
link to her ornaments. My pictures don't do them justice because I messed up the focus. The
detail on the figures is amazing! You can make out little stitches on the quilt and clothing pieces and the painting is just lovely. They're on my bedside table now and it makes me happy just looking at them.
Sunday Salon - The Yiddish Policeman's Union
So, I got
run over by a bus on Friday. Saturday, I'm standing in the kitchen with my sister, a stupid grin plastered on what's left of my face, reading her a paragraph from
this book. She looks bewildered. "Didn't you just get run over by a bus?" she's thinking. "Yeah, but this is a great book!"
The previous paragraph has a faint echo of Michael Chabon's writing style. With apologies to Michael Chabon, of course. What do you call that kind of writing? I don't know the technical term, but I call it amazing!
I'm a little distracted right now, so I'm not reading very quickly. I think I've read about eight chapters so far. I love Michael Chabon's writing! This is a very 'ethnic' book, peppered with Yiddish. (There's a glossary at the back of the book, so that's not a problem.) The story is interesting and well crafted and this is the perfect book for me right now.
Labels: Michael Chabon, The Yiddish Policeman's Union
This hasn't been the happiest of days. I went in for a biopsy last week and today I was told that I've got breast cancer and there's lymph node involvement. Perhaps I waited too long to go in about it, but the funny thing is I never for a moment considered the possibility of cancer. I've always been a pretty good physical specimen and I just don't believe in 'illness'. Well, like the old joke, I 'ken the noo'. (That's a Scot's dialect phrase, don't know if I've spelled it correctly...the joke is about an old Scot who is regretting something or other, wailing "If only I'da kenned!" The voice of God comes down "Well, ya' ken the noo!", meaning 'you know now').
Peter and I were sitting in A & W, just finishing off coffee and bacon'n'eggers this morning when the call came telling me that the lab results were in. Less than an hour later we were sitting in the doctor's office while the poor young woman squirmed and tried to get me to say the "C" word so she didn't have to. The office had already made an appointment for me to see a cancer specialist next Friday.
I've told my sister and two of my children. (One lucky child has yet to receive the surprise bucket of icewater over the head. ) Everyone's been very sweet and supportive. And look at the dear note Jon left on the whiteboard.
Peter and I took the van in for an oil change today. The car dealership is in a seemingly decent part of downtown Victoria. We dropped off the car and walked two blocks, crossing a tourist-trap street known as "Antique Row". I had spotted a little restaurant called Bubby Rose's that I thought might be a good place for breakfast. It was too noisy so we didn't go in. We headed back in the direction of the dealership. In the first block we came up behind a man who turned his back and proceeded to piddle against a wall. We approached the corner at the same time as three rough-looking kids. Two girls and one boy, they were probably in their late teens or early twenties. They looked 'Goth' -- rings through the lips and tattoos. One girl was pulling a shopping cart that was loaded with sleeping bags, blankets and miscellaneous clothing. This is the city core.
That's me lying on the radiation table. (My arm really isn't as 'meaty' as it looks!) . The facility has five of these machines and each one treats between fifteen and twenty patients every day, five days a week.
