My mom wanted to know how my hair was coming, so here ya go. It grew back curly, which I have heard is common with post-chemo hair. It should eventually return to it's normal texture. There's quite a bit more gray in there than is evident in the photos, but for now I'm leaving it as is. Time for a haircut...the first I've had since July.
Unfortunately, it wasn't spent in an alcoholic daze. No, I wasn't drunkenly jumping on the bed, like Jack Lemmon*. I was lying on it, wishing I could actually catch a few Z's. Friday night, I hit the so-called "nadir" of chemotherapy, when the effects of the previous treatment cause one's blood-cell count to tank, and in general make you feel like shit. The nadir hits 4-7 days after treatment, so I already knew I was up for a fun and active weekend. I spent most of yesterday in bed, and my attempts to complete even the most basic tasks today have been desultory. My accomplishments, other than this post: taking a bath, and making coffee. I also was very encouraging as my husband removed the two window unit air conditioners and carried them down to the basement. I'm going to try to do a load of laundry this evening--wish me luck.
*Thanks to Wikipedia, I now realize that I was thinking of The Days of Wine and Roses, although The Lost Weekend is looking even more interesting, due to the fact that it was scored with a theremin, and the original story involved an incident of gay-baiting.
Goodbye, Baxter 6300 I.V Pump. I'll miss hearing you erupt into loud alarm after I exercised the utmost care while rolling you into the toilet. You always waited until I was seated on the throne, you joker. But most of all, I'll miss the way you drip, drip, dripped poison into my veins. May we never meet again.
I completed the 8th and final chemo today. I told Nurse L that she was the only thing I was going to miss about it, and she gave me a big hug. Dr. G, who I'll see again after my radiation, examined my breast and said that the tumor looked "good," and that it was hardly palpable. Tomorrow, I call the surgeon* and try to get a tentative date. However, he'll probably want another MRI before proceeding. The process of arranging cancer treatment is reminiscent of using more than one contractor on a home improvement project. You have to do all the coordination with the different trades, continue to monitor the work quality and progress, and then the flooring guy (or oncologist) suddenly doesn't show up for a month. I need to hire a general contractor--one that specializes in cancer.
There's one more plus to ending chemotherapy: I won't have to buy a yet larger pair of "fat" jeans. I stepped on the scale to be weighed today, and discovered that I had gained another three pounds since my last visit. I weigh more than I ever have in my life. And I'm bald. Fortunately, both are reversable.
*Yes, my husband and I both are positive the oncologist told us his office would contact the surgeon. You have to get it in writing from these people.
In honor of National Breast Cancer Awareness Month (just in case you didn't notice all of the pink crap for sale everywhere):
6,000 Runners Fail To Discover Cure For Breast Cancer
Before today's chemo started, a nurses' aid took my blood pressure, temperature and checked my weight. I've gained 11 pounds since starting chemotherapy. Not too surprising to me; lately I've been straining to get into jeans, and zipping skirts up three-quarters of the way and covering the gap with a long top. Weight gain during chemotherapy for breast cancer is very common. It is poorly understood, however. It could be due to hormonal changes, stress-related overeating, or lowered activity levels. I am an over-achiever in this regard--apparently a 10 lb. gain is typical of women receiving a six month regimen of chemotherapy, and I've only had not quite four months.
During my session, Nurse L dragged Dr. G in to take a quick look at me. It was the least he could do, seeing that he missed the last two scheduled appointments. I was already hooked up to the drip, so disrobing wasn't an option. Thanks to an American Apparel t-shirt bra and my rapidly eroding sense of modesty, I just hoisted everything up to give him a look-see. "The tumor appears to be shrinking," he confirmed. He seemed to think I was doing well, otherwise. We asked him about the surgery, frustrated with the fact that we had no idea when it was going to actually happen. He said that his office would contact the surgeon when I have my final chemo. I'll believe it when I see it.
Almost done...almost done...that's my mantra. Once again, my oncologist Dr. G. was out, and the nurse practitioner examined me. My husband was disappointed, most especially since he was prepared to "tear him a new one" over the vague information about my surgery schedule and the lack of palliative care. BCH* does a great job with the drug delivery, but not so much with information-sharing or emotional support.
Friends have asked me the following:
Do they have a support group? I dunnoh--can't find evidence of any associated with the hospital. They do have a brochure for Gilda's Club, which offers support services. The Nurse K., the nurse practitioner who examined me this time, offered to give me the contact information for another nurse who had survived breast cancer and is now on Tamoxifen, an estrogen antagonist that has some nasty side-effects itself. It's the first time I've received any offer from BCH staff to be put in touch with another survivor.
Do they offer therapeutic massage? No. As a matter of fact, I haven't seen evidence of any palliative care (i.e. counseling, support groups, meditation or yoga, massage) Some smaller Chicago area hospitals offer these services, but not BCH.
Oh, and I received my first billing for chemotherapy. If I didn't have insurance, would have to pay $2500 per session. That doesn't include the cost for blood work or examinations. Every time Dr. G looks at my boobs for ten minutes: $158.
Am I receiving the best treatment for my cancer? In fact, I probably am receiving excellent care. So why do I feel so uncared for? Perhaps BCH will eventually launch a research study on whether patients are also feeling human beings. I hope the results are statistically significant.
The final chemo drug Taxotere Paclitaxel has a new set of side effects, including bone pain, watery eyes, and rosacea-like pimples and rash on my upper body. My eyelashes and eyebrows are scanty, now. About four or five days after chemo I get very tired and easily winded--probably a sign that both my white and red blood cell counts are bottoming out. My hot flashes are on a more predictable schedule, although one that interferes with early morning sleep. From about 4 to 6 am, it's covers off, covers on, over and over. During this time, sleep is in short snatches until the next one hits.
That's all the news, which as per usual is in the form of a complaint. They were right: when you have your health, you have everything. Too bad I had to get terribly sick to appreciate that axiom.
*Big Chicago Hospital
This was a botched shot, but a rather sublime one. I think I was having a hot flash as well, just to add to the ordinary spit-and-shine polish.
To friends and family who listened to me talk, and sometimes cry, over the phone last week, love and thanks. I was really low, and you helped bring me up. L & E, thanks especially for sharing the details of your own experiences with me. Knowing someone else was strong enough to get through that helped me feel a little stronger, myself.
The hot flashes have reduced in number and intensity, and (knock on wood), I seem to have regained control of my pelvic muscles. I won't have to add Depends to my shopping list any time soon, thank god. I talked to the nurse about it, and she was mystified. She suggested a prescription for Effexor, an antidepressant used off-label to treat hot flashes. Such a trade-off: the side effects of Effexor vs. the side-effects of my violent hormone fluctuations. I declined, for now.
Today was the first chemo with a new drug, Taxotere, On the plus side, it won't damage my heart, like Adriamycin, and I don't have to take steroids or antinausea meds. On the down side, it can cause peripheral neuropathy, i.e. nerve damage in the fingers and toes. Numbness is a common side-effect; severe reactions to the drug include nail loss and residual pain. I did my research this time, and found a study in France where subjects who wore frozen medical gel gloves during treatment experienced minimal neuropathy.
You guessed it: I brought a cooler full of frozen gel pacs and gripped them during my therapy. Nurse L let me do it, although she clearly thought I was a little nuts. It was, uh..uncomfortable, to say the least. But, I just shelled out nearly $200 on private guitar lessons. If freezing my hands for two hours every two weeks keeps me playing, it was worth it.
Ha...gotcha! Have you ever noticed how women are encouraged to joke about menopause? Oye, the hot flashes! Cue laugh track.
Yesterday, I had at least twenty separate hot flashes, and none of them have been funny. Each one seemed to wash away a little bit more of me, like the surf carving away a sand castle. This morning I cried out to my husband as the worse one hit, a nearly indescribable combination of fire and ice, followed up by nausea and abdominal cramps. He stroked my soaking wet head as I trembled and wept.
I'm being turned into a eunuch. In my pelvis, there's a deadness. The flush of estrogen from my body also brings geriatric problems, like sometimes peeing myself when I cough or sneeze. I cried the last time it happened, as much from nostalgia as humiliation. I was a normal woman a little while ago...remember what that was like?
A friend naively asked, "can't you do hormone replacement therapy?" If you haven't gotten that memo, doctors no longer recommend estrogen replacement for menopausal women, especially those with estrogen-receptor sensitive breast cancer, such as myself. Instead, we are instructed to take tamoxifen, a drug that blocks estrogen. Kill the woman to save the person: that's the prevailing theory. Tamoxifen is carcinogenic in itself; taking it doubles the chance of endometrial cancer. I've haunted countless listservs looking for information from cancer survivors, and those taking tamoxifen uniformly complain of non-stop hot flashes, loss of libido, anorgasmia (inability to have an orgasm) and other problems associated with low estrogen. The term "castrated" is often used by women to describe their symptoms.
Anyway, a co-worker told me how she liked the way I mix up the content in my blog: funny combined with "sad, struggly stuff." I'm afraid my funny bone is estrogen-receptor sensitive, just like my cancer, and the sad, struggly stuff is what's left for now.
How am I doing? Thanks so much for asking. I very often feel mildly lousy, sort of like having a touch of the flu, but without clear end in sight. I often have the urge to lie down. I told my officemate that he should not be alarmed to see my feet sticking out from under my desk; I was most probably just taking an impromptu break. On chemo weeks, I take a four-day course of steroids. These make me hyperactive and sometimes weepy and little paranoid. During my third chemo cycle, I upset a friend a great deal by accusing him of ignoring me, which he was not. The steroids also have added seven pounds, mostly around my middle.
Also on chemo week, I develop a sore throat, and sometimes cold sores and tenderness in my gums. I am constipated, a condition that completely and excessively reverses itself the next week. You see, the chemotherapy drugs target rapidly-dividing cells throughout the body, including those in the intestines. My spleen...I'm getting used to my spleen. The swelling is brief, and hardly bothers me any longer.
I am getting shiny bald. The hair loss includes all of my body hair, although I have, to my chagrin, had to shave my legs earlier this week. And, I wouldn't pay for my brazilian bikini wax--entirely too haphazard. Eyebrows still intact, but for how long? My skin heals very slowly, and I'm using bandaids to cover even minor blemishes and cuts.
I had my last period of my life, I believe, about three weeks ago. It arrived a week after the previous one had just finished. When a hot flashes hit, I feel like a human can of Sterno--I envision a nearly invisible blue-white flame is shooting out of the top of my head. If you are a smoker and need a light, just touch your ciggy to my scalp. It's a shame to waste all that heat.
The tumor does seem to be shrinking, and my breast is gently collapsing as it recedes. It's now easy to see how much tissue was eaten up by the thing. I wonder if I'll ever be able to look at myself in the mirror and feel "normal" again.
I don't feel very womanly, that's for sure. Even the little man outside the laundromat who muttered "chiquita" (cute), at me yesterday, couldn't raise my spirits. Perhaps I should view this as a form of chemical satori, or a crucible, where my sexuality is burned off, like dross. I just wish I knew who or what I will be when this is over.
Let me introduce you to my big bag 'o drugs. I have three different anti-nausea medications, one steroid, and one white blood cell booster. The booster, Neulasta, has to be self-injected, and comes encased in a clear plastic guard which locks after injection. This is to prevent accidental pricks to those handling the medical waste, for example. I successfully self-injected after the first two chemo sessions, then made my fatal mistake: I read the instructions.
I've always had an aversion to instructions, one so extreme that it took me over a year to discover all the features of my IPod on my own. I should have followed habit with the Neulasta and continued my intuitive (and correct) injection procedure, but instead I thought I should at least look at the insert that came with the drug. The instructions showed how the sliding guard could be snapped up in place after injection, blocking all access to the used needle. Easy, I thought, absently-mindedly moving it up and down...CLICK. I had locked the guard before using the injection. It's very sturdy-looking, and quite close to the drug receptical...not something a band saw or bolt cutters could probably manage. In addition, the drug is delicate. I was told repeatedly that shaking it would damage the mixture.
I called K, a pharmacist at the specialty drugstore for chemo patients. K is this fast-talking, hyperefficient gay man who I imagine snapping his fingers as he solves all of my problems. Girl! You locked your Neulasta syringe?...no prob! Here's the direct number to a rep at Amgen, just tell him K sent yah! [Snaps!]
So, I actually called the drug company that makes Neulasta and asked them to give me a "one time accomodation" for being a knucklehead, at which point they would give a credit to my drugstore for a new syringe. This is no small matter, since if I didn't get the credit, I would have to pay $150 out-of-pocket for a syringe. After answering a series of "so...how can you be so dumb?" questions from the Amgen rep, I called back K. "I can't be the only person who has ever done this." K reassured me, "no, it happens all the time." Tomorrow I wait for a courier to bring me a new, unlocked syringe.
Chemo was uneventful today. Ativan still rocks. After I went home, I fell asleep and dreamed that I was renting a white clapboard house somewhere on the beach, maybe in Martha's Vineyard or Cape Cod. I was running around in a white bikini getting ready for an old-fashioned clam bake. You're all invited; just close your eyes.
I just had my third chemotherapy session of eight. Miracle of miracles: no one vomiting or dry heaving in our earshot, and this time we got a nice private room with a work table. Once again, I found the strength to play Snake on my phone. I then discovered that the default Steven Hawking-like voice commands could be customized to say, for example, "ELEESA EES GRAY-EAT," and "JOE EES THMAAN."
Nurse L was back from vacation. She noted that my birthday was coming up soon. Yes, I told her, and my birthday has shown me the upside of having cancer. Although I still have another year, I was beginning to dread my 50th birthday. Now, when I hit that milestone, especially if I'm cancer-free, I'll celebrate like hell. I'm thinking a bottle of Veuve Clicquot in Paris. That sounds about right.
I'm losing my hair; it's coming out in clumps. After washing my hands, I absent-mindedly swiped a wet hand across my crown, and my fingers were coated with it. "It's just hair," I told myself, but I and my spleen are feeling more metaphoric. It reminded me of other losses, and choices not made, or made carelessly. I was full of September thoughts.
Recently, I've been listening to a recording of a guided meditation called the Metta Bhavana, or cultivation of "Loving-Kindness." Loving-Kindness is, to perhaps oversimplify, compassion, patience, and understanding. In the meditation, the practitioner is asked to imagine wishing wellness, happiness, and freedom from suffering to oneself and to others.
Especially now, it is helpful for me to remember how universal is the experience of suffering. As I rode the train home tonight, I looked at the faces of my fellow passengers. Some were expectant and relaxed, and others careworn and distracted. And, I realized how much company I had (alas) in both my illness and my regrets. My fellow passengers.
In light of my recent discovery that all of my once favorite beverages, such as Pilsner Urquell and Knob Creek do not go with chemo, I've been trying to bring back a little excitement into my drink-deprived life by investigating the making of syrups.
Yes, I could buy soda-pop, or the insipid corn-syrup flavored liquid candy which is marketed as such. When I was a kid, you could go to any gas station, and there it was: the Coke machine, a humming, steel megalith wearing an enticing veil of condensation. For 25 cents, (at least in 1965), it would give you a tiny Coke, in a returned (not recycled) bottle as polished and blue as seaglass. It too would be covered with a fog of cool droplets. You cracked open your tiny Coke with an opener on the side of the machine. It tasted so good it hurt, as the carbonation and "secret ingredients" of the searing brown liquid (Some folks unclogged drains with warm Coca Cola) hit your soft palate. Then you tasted the sweetness, the clean sweetness of cane sugar, which blended perfectly with the slightly bitter back-taste of cola and those "secret ingredients." Refreshing, so refreshing.
But, most things were better in 1965. Except civil rights, the cold war, Vietnam... but still, Coke was damn good back then.
Last week, I had lunch at the Custom House, a restaurant located in the hotel where I had my final bourbon as a single woman. The name has changed, and the restaurant has been extensively remodeled, but there it was: the bar where I sat in my wedding dress and threw one down with Laurie and Marjie. Miss you, ladies. When I asked about kiddie cocktails, the barman recommended the house homemade ginger ale. I've used his hints and swiped a few more off of the internet for my own brew. It packs a punch, so give to real kiddies with caution.
Ginger Ale
Ingredients*
2 cups water
2 cups sugar
2 cups fresh ginger, peeled and cut into coin-sized slices
Club soda
Lime or lemon wedges
Boil 2 cups peeled and sliced fresh ginger in two cups water for five minutes. Allow to cool and steep for 20 minutes.
Strain ginger slices out, and bring ginger-infused water to a boil over medium heat. Slowly stir in two cups of sugar (or less, depending on thickness and taste preferences). Cook until texture thickens slightly, about five minutes. Remove from heat and let cool to room temperature.
Some recipes recommend straining in a fine sieve to remove sediment, but I like the murky, medicinal quality of its appearance.
To make ginger-ale, pour over ice in a glass. Start with 1/4 c to for an ice-tea sized glass, and more to taste. Squeeze in two lime or lemon wedges, and fill the rest of the glass with club soda or sparkling water. Spicy and refreshing!
*additional spices can include cloves, a cinnamon stick, Asian anise/liquorice, and, per the barman at the Custom House, bay leaf and cayenne pepper.
My husband took this picture, but only under duress. I wanted to demystify the process and show me, happy chemo patient, during infusion. However, it's difficult to crack a real smile when something called Cytoxan is being dripped into your veins. Cell poison, that's essentially what the name means. Nice if it's just the cancer cells it's going after, not so nice if the poisoning is more indiscriminate. The drug stops or slows cancer cell growth, but also interferes with bone marrow, hair and nail growth.
Speaking of hair growth: I better get some flattering pics of myself in short hair while I still have some. Last night, as I tried to pluck a few wayward eyebrow hairs, I realized that I didn't really need tweezers. I could pull them out with my fingernails. I tested a leg hair. Yep, came out with hardly any resistance. It seems that every time I get used to something, a new freak-out is waiting just around the corner.
My chemo wasn't scheduled until later in the morning, so the earlier appointments were for blood work and a meeting with the oncologist, Dr. G. He once again left us alone in a room, but this time we sat there until someone collected us. When the pager for my chemo therapy vibrated, we then trooped up to the treatment door to wait for a technician. A distressed-looking woman and her husband blocked our path. "Do you need water?" The technician asked. The woman nodded mutely, her face desperate. The nurse led us into a treatment room, which this time was a shared space, with threadbare recliners and a curtain separating the two room halves. The water woman and her husband came in behind us and sat on the other side. She peeked around the curtain, putting a hand on one of the large medical wastecans on our side of the barrier. "Sorry folks, I need to borrow this. It isn't gonna be pretty." She barely got back to the other side of the curtain before vomiting.
While waiting, I had been reading one of the cancer-oriented magazines strewn around the oncology center. I think it was called CancerWoman. In it, an article described the importance of dignity for patients, especially those with terminal diagnoses. Dignity was in short supply in our shared chemo room that day, as the poor woman retched uncontrollably next to two complete strangers. The nurse came in, and said "all the private rooms are full right now." The oncologist then arrived and asked about antinausea drugs. No, she hadn't been given any yet. I heard him say "Ativan drip." There where whispers assuring the couple that it was inexpensive. Oh God, to be uninsured or underinsured with this illness. Forget me, pray for them. In half an hour, she was snoring peacefully.
Loaded full of my own dose of Ativan, I had no objections to a stop at our local diner, Clara & James (although some say James got the heave-ho), for a post-chemo omelette. I have a lot of affection for this little place, especially after a recent make-over involving kelly-green vinyl and a mural with dozens of unrelated cartoon characters. That's Yosemite Sam peeking out from behind the tree. And, that's my husband on the right. Two vegi omelettes with toast, a coffee, tomato juice and Sprite, under $20. Two thumbs up!
Although I ate with gusto, I will probably feel pretty lousy later on, especially later tonight. Already, the Cytoxan has my head pounding, and nausea is creeping its way back into my consciousness. Chemo is like that, and you take your pleasures when your stomach will have them. Although he was not exactly referring to omelettes, I think these lines from Andrew Marvell's To His Coy Mistress are still appropriate:
Let us roll all our strength and all
Our sweetness up into one ball,
And tear our pleasures with rough strife
Thorough the iron gates of life:
Thus, though we cannot make our sun
Stand still, yet we will make him run.
I am troubled by a recent awareness of my spleen. For the last two or three days, I've awakened with a dull backache on the left-hand side, and a feeling that there isn't enough room in my thoracic cavity for all the things that want to fill it. It is probably a side-effect of the drug Neulasta, which I self-injected on Wednesday. The drug, which is intended to stimulate white blood cell production, also causes spleen enlargement.
In ancient humoural medicine, the spleen was regarded as the source of black bile, or "melancholia," an excess of which could lead to a dark and brooding disposition. This last month has given me much to brood about. The dark thoughts, mostly about the big dirt nap..those have been with me as well, although daylight and friendship can usually dispel the worse.
In light of such spleenic thoughts, it seems silly to dwell on that ephemeral crown of women, or at least for yours truly: hair. I was always good at growing hair. Even in my mid-30s, I had a thick cascade of the stuff that fell to my waist. It was a powerful feminine totem: in absence of a high cheekbones or hourglass figure, I was still the woman with the big braid. It may not have been the most flattering look, I'll admit. In my wedding album, there are a couple of photos of my husband in blissful pas de deux with what looks like Cousin Itt from the Addams Family. I tried short hair before, but was always dispirited by the number of times I was called "sir," and the feeling that I just wasn't really pretty enough to pull it off.
In anticipation of hair loss due to chemo, I had a little hair-cutting party at Big Hair, in Roscoe Village. My friends Celia and Kerri provided emotional support and also documented the shearing. It wasn't as traumatic as expected. Just remember to call me "sir" with a smile, and I promise not to hit...very hard.
Before
Floor
Cripes...
More from Celia's album
C & K: love and thanks
Terrified, I sat in the oncology center waiting room, reading the Big Pink Breast Book given to me by the surgeon. Tears started welling out of my eyes and down my cheeks. It seems like I can always locate something in that book that causes me to cry right before meeting with the oncology staff.
This time, it was the illustration of a chemotherapy port. A chemo port turns you into a human juice box for duration of your treatment. Instead of finding a suitable vein on your arm, the technician can just pop off your cap, and voila!, you're ready for infusion with the toxic chemical du jour. Throughout my testing and diagnosis, more than one medical staff person mentioned the port, insisting that I could "shower and swim, and if I wore high-cut tops, nobody will even know it's there." That seemed beside the point, considering the fact that if I got a port, it would require me to ignore a tube that appears, from the illustration, to be going pretty deep into one of my chest veins. It made my flesh crawl. If they tried to push this port thing on me again, I was going to fight it.
Imagine my joy when Nurse L, examining my arm, cried "Oh, you have BEAUTIFUL veins! I can't imagine why anyone would suggest a port for you." I will still enjoy hearing "you have pretty eyes," but no complement on my appearance can ever recreate the elation of that moment.
Nurse L, who was patient and genuinely caring, was an enormous help. She at first sat down with us and explained both the therapy and the many, many bottles of antinausea medicine I was to take home. Nurse L. also minimized, in my case, the possible side-effects of chemotherapy, explaining that many people, especially those previously healthy as myself, have relatively little nausea or weakness. Still, I had to inject myself with Neulasta, a bone-marrow stimulant, within 24 hours. After a brief demonstration, I was sure I could do it.
The little private chemo room was a comfortable as is possible with such a procedure. I sat on a hospital bed, headboard up, so I could read, and my husband sat in comfortable upholstered rocker with a footrest. We also had a tv with dvd recorder; maybe a good way to knock off those Sopranos we missed. Nurse L. inserted the I.V. needle into a vein on my right hand, and secured it with a butterfly clip and tape.
I started with a saline drip, then a liquid form of anti-nausea medicine, Ativan. Ativan is also an anti-anxiety drug and sedative, two effects which were spot-on considering the circumstances. Then, the cancer-killing stuff: Adriamycin and Cyclophosphamide. The medicine was a dark rose color, and I was warned that I would urinate a lighter shade of this for a while.
While I infused, I played the Snake game on my cell, having discovered that reading was nearly impossible. My husband compensated for my anti-intellectualism by digging into the latest issue of New York Review of Books. Suddenly, the woman receiving chemo across the hall leaped up, and grabbed her I.V. stand, and hustled to the bathroom. I haven't heard retching like that since my husband got food poisoning at a cook-out in Minneapolis. It was horrible-sounding, since it was clear she had nothing in her stomach left to expel. Nurse L. ran back to our room, ostensibly to adjust something on my I.V. "I don't believe her vomiting has to do with the medications." she said, mysteriously. Wow. If it had nothing to do with the chemo drugs, then what were the alternatives: the flu? morning sickness? watching The View?
The entire procedure took about two hours, including the question and answer session at the beginning. Nurse L. warned me that the second cycle (probably starting with Chemo 5/8), will take about four hours. She also started the process of setting up regular appointments, although she has to coordinate first with the oncologist. We are shooting for Monday mornings at 7:30, since in medical care, the early bird gets the worms, or waits as little as possible, that is.
I felt great at this point. Ativan, I heart you. I meandered into the parking garage, more than willing to climb into any open car door. Everyone seemed so nice. Fortunately husband poured me into the Escort, and we were off to pick up two equally drugged cats, both of which had suffered tooth extractions earlier in the day. When we arrived, we were surprised to find out that Alma had a little impromptu mastectomy as well. The vet had tried to contact us, but our cells didn't work deep inside the walls of BCH. They found lumps near two of her mammaries, and decided to remove the entire side as a preventative measure. So much for the theory that breast-feeding lowers the risk of cancer. During an eight-month period, she had twelve different kittens latched on to her. Her boobs became so pendulous, the vet who spayed her just worked around them as best he could. After she came home, all shaved and (finally) sterile, she reminded me of the she-wolf who nursed Romulus and Remus.
The nausea hasn't been unbearable, it's more like that inkling that you may be coming down with something. The fatigue is a bigger issue, and they warned me that my white blood cell count would probably bottom out next week. At times, red blood cell counts drop as well, and patients become anemic. The Neulasta, which I self-injected this morning, will cause bone aches as my marrow goes into overdrive to produce more white blood cells.
Discussing medical conditions is one of the more deadly forms of discourse, IMO. If given the choice between hearing someone's dream or hearing about their gall bladder surgery, it's always a toss up. I promise more Not Cancer! stories, including those involving the CTA in the near future.
Love to all,
E
Today is my late day at work, and I used the morning to run some errands in the Loop, including getting my driver's license renewed. At Monroe and Dearborn, a couple of husky young men approached me. One of them said, "Excuse me, ma'am. Can I ask you a question?" I could tell he was gearing up for a sales spiel. "Do you get your hair cut at a salon here in Chicago?" Yes, I answered.
Some of the big chain salons stir up business by trying to solicit new customers off the street. I was surprised this time, because they usually target areas near college campuses, and frankly, I am the wrong age. This is the first time I've been approached since I hit 40. Not that I mind being ignored; a couple of times after I rebuffed sidewalk hair hawkers, they insulted my current cut. One time, near the end of my run as part of the youth demographic, one of them muttered "Ah..you're too old for us, anyway," as I walked away.
Back to this morning: For a second, I was tempted to mess with him. Perhaps listen to the entire script, looking at first slightly skeptical, then show a little more interest, and finally ask him if the salon had any special deals for bald people. Instead, I put a hand on his meaty arm, and gently interrupted his pitch, "I don't think we can do business, sweetie. I'm starting chemo tomorrow."
*I am not trying to increase hits to my blog by using Uma Thurman as a tag. If I wanted to do that, I would use Scarlett Johansson, instead.
The girl that I marry will have to be
As soft and pink as a nursery*
My friend Annie recently forwarded Barbara Ehrenreich's excellent article/rant, Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch
I squirm at the mass-market girliness that masquerades as breast health care. After my diagnosis, my surgeon gave me a pink book (with roses!) titled "All About Breast Cancer." The pink thing is truly bizarre.
I associate the color with babies, and resent seeing my disease swaddled in it. The oncology center (and cancer in general) is unisex, so at least there I am spared the indignity of having my cancer branded like a dish soap.
Oh, yes...I start chemo on Tuesday. It's still feels like its happening to someone else. Tonight, I went to the Pitchfork Festival and listened to amazing performance by Sonic Youth. I looked around at all of the mostly younger faces, and honestly felt not a day over...well, 30. It is difficult to get my mind around the concept that I am very ill.
*From Annie Get Your Gun
Did you know that when a physician shakes your hand and says, "It was nice meeting you," and leaves the room, that you're supposed to stay there indefinitely? Neither did I.
On Monday, my husband and I paid our first visit to the oncologist, Dr. G* at Big Chicago Hospital (BCH)*. The entire oncology center at BCH must be enormous, if the ballroom-sized waiting room is any indicator. A number of patients in various stages of treatment waited with us. One man, about 35 years old, played cards with a woman who was probably his wife. He looked like a fitness buff, with a broad chest and bulging biceps. He was also completely bald and his skin was a deep, jaundiced yellow.
After an oncology fellow took my history and examined me, Dr. G arrived and re-examined me. Since BCH is a teaching hospital, I am nearly always examined by more than one person. Two years ago, I was admitted to their emergency room with chest pains. While I was awaiting the results of a blood test, a small group of what looked like teenaged boys, dressed in doctor costumes, came into my curtained "room," eyed me warily and then listened to my heart. Interns, apparently.
My husband and I were directed to a conference room to await the arrival of both docs for further consultation. I decided to take a bathroom break, and immediately became lost in the rabbit warren of offices, examination rooms, and labs. I stopped in front of a desk where two women wearing lab coats sat. "Excuse me, can you tell me where Dr. G's conference room is located?" They both stared at me. And said nothing. For an uncomfortable length of time. Finally one of them broke out of her trance and said "Are...you one of his patients?" Apparently, because I now carry all my medical records and notes in an uber-nerdy accordian file with a handle, they thought I was there to do a presentation. I doubt that my jeans, WLUW tshirt and Dansko sandles were consistent with the normal attire of an medical oncologist.
After I had been safely led back to the patient conference room, Dr. G and fellow appeared. Dr. G recited his chemotherapy script, the rote quality of which was entirely understandable considering how many times he has to do it each week. We had many questions for him, and after fifteen or twenty minutes, he and the fellow were showing signs of restlessness. My husband however, was not going to be rushed. He kept up with the questions, while Dr. G attempted to struggle to his feet two or three times. Once we finished, Dr. G. extended his hand to me and my husband and said it was nice meeting us. He mentioned that his nurse would contact me within 36 hours (why such an curious range?) to schedule my chemo. As he was leaving, he told the fellow that I needed a prescription for a "cranial prosthesis." She nodded, and then herself bid us goodbye in a formal manner which seemed to indicate "you're not seeing me again, either." Neither of them asked us to wait. We continued to sit in the conference room for a little while, confused. After a five or six minutes, we left.
Two days later, after never receiving a call from Dr. G's nurse, I located her number and left a message on her voice mail. She returned my call, and said that the fellow told her that we had left the room and that she "didn't know where we went." Never mind that all three of my phone numbers are in their files and I signed a waiver to allow them to share this information. The nurse tried not to sound appalled when I informed her that I had not received a prescription, nor had anyone ordered the tests required before chemo can commence. Did anyone mention self-injection with a drug called neulasta? No...I definitely would have remembered hearing about that. Anyway, I'm now scheduled for tests and a call-back is promised tomorrow for the chemo appointment. Lesson: when it comes to actually coordinating treatment, make sure you talk to the nurse ASAP. The doctors just do the fancy stuff.
*Names of people and institutions are changed because...I don't want them to find this using google.
