Puzzle Pieces

I just caught the opening of the Seattle Seahawks/Chicago Bears playoff football game. I’ve lived near or in both cities, but I’m only one of those fair-weather fans. Out here, we’re all stunned that the Hawks have gotten as far as they have this year. But after I saw the Bud Light ad, with the guys partying in the oil change shop, I figured I’d be better off writing.

This is a column of updates and more pieces to add to the triple-negative breast cancer puzzle.

First, the personal updates:

I had my last 3-month check-up back in November and everything seems to be fine. That abdominal pain I was having turned out to be – besides another trip on the worry train – just a bladder infection. The naturopath has again tweaked the supplements (add vitamin B, drop the CoQ10). At my appointment with him, we discussed our preferences for martini recipes. He prefers gin with a twist AND an olive. Rumor has it that he’s also been known to eat a Pop Tart on occasion. It’s good to know he’s human.

The chemotherapy port was removed before Christmas, and it’s nice not to have that lump on my chest anymore, even if I had to give up a day of skiing to recover properly. The sacrifice let me finish grading essays for my classes, and I am back to teaching again as of this week. We celebrated my daughter’s 14th birthday, Christmas, and New Year’s, and I managed to trigger a mistrial during jury duty in November, all because of some M&Ms. (More on that story later on my other blog, Firefly.)

Here are the news updates from the Breast Cancer Symposium in San Antonio in December:

  • PARP inhibitors still seem promising in treating patients with metastatic triple-negative disease, and there’s more and more evidence that hormone replacement therapy is tied to the development of breast cancer.
  • Obesity negatively affects survival for those with hormone positive tumors, but not for hormone-negative. (Guess I can start gaining weight now.)
  • In the past 10 years, cases of triple-negative disease have almost doubled in women in Brazil while cases of hormone-positive cancer have decreased, though no one knows why.
  • The FDA has pulled the plug on the use of Avastin – a chemotherapy drug – for breast cancer patients, but Avastin shows greater promise in those with triple negative disease. Avastin is also used in patients with other types of cancer.


And now the puzzle pieces.

A recent article in the New England Journal of Medicine charted the overlap between triple-negative, basal and BRCA-1 breast cancers. The authors found that triple-negative tumors can also be basal, but aren’t always. They are also often associated with the genetic defect of BRCA-1, but not always. BRCA-1 (often pronounced Brack-ah 1) is the more serious of the two types of genetic defects found in breast cancer (the other being BRCA-2), and can be implicated in ovarian cancer as well. This article got me wondering whether to look into genetic testing for my situation.

As I mentioned many posts ago, I don’t have much of a family history of breast cancer. (Despite what the media lead you to believe, it’s only about 15% of women who do have that family history.)  It appeared only in my maternal grandmother – somewhere back around 1970, long after she went into menopause.  Like most women at that time, she had a total mastectomy and doctors didn’t know anything about hormone receptivity.  She did not have chemotherapy or radiation and lived another dozen years till her death at the age of 85. This illness has not shown up in any of my close relatives. Given that I come from a Catholic family, there’s a lot of relatives (8 aunts/uncles and about 35 first cousins). The recent research shows, though, that it’s not just a pattern of breast cancer that gives away the genetic problem, but a pattern of prostate cancer too.

A misconception is that breast cancer passes through the mother’s side of a family, but this article from Parade magazine shows that the genetic defect often passes through the male line, showing up as either breast cancer (1970 new cases a year) or prostate cancer. A friend of mine followed her instincts when she received her diagnosis at the age of 41. The docs told her there didn’t seem to be a genetic component, but once she investigated she discovered that her paternal grandfather had died of prostate cancer in his 50s. Not only did the gene pass through the male line to her, but it skipped a generation too.

As screening methods evolve – not just for cancer but any serious health issue — it becomes increasingly important to have as full a picture of your family history as possible. There are a number of online tools you can use to chart that history, like this one from the Surgeon General of the U.S.

And finally, there’s the puzzle of light:

An interview in January’s issue of The Sun magazine spotlights Andrew Weil, M.D. Those of you familiar with his work know that he embraces alternative methods of healing and is based at the University of Arizona. In the interview, he comments on the influence of light on cancer: “One detrimental influence on our sleep is our ability to light up the night, which is a significant change in our environment over the past hundred years. There’s a body of literature suggesting that exposure to light at night, even briefly, greatly increases cancer risk, especially risk of breast cancer in women. Women who are blind from birth have very low rates of breast cancer. Women who work night shifts have high rates of breast cancer.” He recommends that, if you need light during the night, use a red Christmas tree bulb, since light at the red end of the spectrum is safest.

If you’re one of those who hasn’t yet put away the Christmas lights, here’s your excuse.



It’s Just a Word

A couple weeks ago, I had the next in my series of 3-month check-ups since the end of chemotherapy last December.  Except for a lingering abnormality in the size of some red blood cells, which I’m told takes awhile to resolve, everything looks good and I am feeling well. My energy has returned to normal, and I’ve returned to teaching and other professional work. As I gain distance from treatment, it’s easier to not think about cancer, though I’m not sure I will (or should) ever forget about it.

But out here on the part of the journey called survivorship, I’m trying to figure out the steps along the way.

One of those steps is figuring out what to do to maintain good health. After the flurry of treatment schedules, the relative freedom of the post-treatment period can leave you feeling like you’re not doing anything to combat the disease. In theory, the cancer is gone, so what then is left to do?

We Americans like the idea that we’re taking action. Whenever a challenge appears, inevitably someone shouts, “DO something!” So, after cancer, some take up the work of promoting awareness, others get involved in advocacy for funding, and we can all buy something with a pink ribbon on it.

So what am I doing? Well, I’m writing this blog and I continue to explore alternative therapies and work with the naturopath.  There’s nothing like a yoga class and a handful of dietary supplements in the morning to give you the feeling that you’re doing something.

Another step in survivorship is figuring out what to answer when people ask what they should say to someone else they know who has cancer.

Last month, it was a neighbor who asked. Last week, it was a friend at work. The friend at work told me about his sister’s death from cancer, in greater detail than I would have preferred, including his observation that cancer allowed his sister to gain the attention she never received in life. Cancer takes many roles in the lives of people and their families, but this is not a role it should assume.

The man then told me about a friend of his, a fishing buddy, who had just been diagnosed with lymphoma. His anguish over his friend’s situation was clear as he described how he and his buddy would rise at 5 a.m. to go fishing at the lake. Along with his friend, he was struggling with the diagnosis and didn’t know what to do.

According to recent projections from the World Health Organization, cancer may soon become the primary cause of death across the globe. It’s not hard to see that cancer will likely touch all our lives.  And so, what  DO you say to someone who has cancer?

I can’t speak for every cancer patient, but I can  tell you this.

No one wants to pass through that doorway to the room marked Cancer. Society still views cancer as an instant death sentence, but that’s not an accurate picture of what’s true. But my experience was not nearly the horrifying series of events I’d imagined, and what I discovered along the way was  a whole lot of life, lived in a new way, and only the same shadow of death we all discover on our own journeys.

Perhaps I’m a lucky one, but I know I’m not alone. According to the National Cancer Institute, there are almost 12 million — 12 MILLION — cancer survivors in the U.S.

And I can also tell you this:  Don’t call it “The Big C“ or “The C Word.”  Call it by its name, the same way you name any other illness: diabetes, hemophilia, asthma, whatever. If you hide from the name, you can’t help your friend find the courage to face it.  As the cross-stitch sampler on the desk at the infusion center states, Cancer is a word, not a sentence.  If you can say its name, you can help your friend stare it in the eye and say, “I see you, but you will not have me.”

Now, what do you DO for someone you know who has cancer? You offer them the best you’ve got to help them affirm life. If it’s a simple nod of recognition to a fellow bald-headed chemo patient at the gas station, then nod. If it’s an offer of help while they go through treatment, offer the help they need, which is not necessarily the help you think they need.  If it’s diverting their attention to other things, then tell them a grand story. If it’s a story about someone else with cancer, make it a hopeful one.

My most startling discovery was that, even in my fear of death, life continued. Do what you can to help them affirm life. And if fishing it is, well then, get out that tackle box and head to the lake.

Too Many Drugs and Mysteries

Started off in a low mood today. It’s grey November. I’ve grown tired of the intrusion of this illness into my life and that sense of just not feeling right.  Nothing wrong on a big scale, but not feeling right either.  The ongoing discomfort under the left arm and the time spent in physical therapy. The dry ticklish cough that comes on at odd times and then mysteriously disappears. The slight ache in my neck and shoulders that comes and goes as well. The continuing anemia that forces the body to slow the pace the mind sets. The oozing blood that clots my nose, and then stops.  As Paul Simon sang it in my ear during infusion:  “I don’t find this stuff amusing anymore.” (That was after Phil Collins, from his Genesis days, singing “I Can’t Dance” and Bette Midler crooning “Am I Blue.”)

And then there’s the burden of all the ancillary drugs to counteract the side effects of the Taxol. For the one cancer drug infusion, there are 4 “pre-emptive” drugs beforehand: Zofran to prevent nausea, Zantac for the tummy, Claritin to prevent allergic reactions, and of course the happy steroids, which I have come to both anticipate, for the lift they provide, and dread, for the later crash.  Then there are the 10 supplements and 2 drugs at home during the week, including Vit. D, fish oil, CoQ10 for energy and the heart, a probiotic supplement for digestion, the glutamine to prevent neuropathy (along with the ice-water finger soaks, it seems to be working), the Neupogen, and the Ativan at night.

When I counted it all out for the naturopath last week, commenting on the supplement-to-Taxol ratio, he grinned widely and said, “That’s the way I like it!”  They may be natural substances, but they can be prescribed just as quickly and heavily as synthetics from the Western practitioners.

This better all be temporary.

My white cell count is a robust 8.7 (normal range, 4-11), but it’s now time to keep an eye on those red cells.  The normal range is 3.8 to 5.2.  My total has been hovering just above 2 (2.25 this week, 2.17 last week).  The key subset  of this count is the hemoglobin, with a normal range of 11.6-18.5.  Today’s number is 8.4, eight being the threshold for a decision to bolster the red cells.  If the hemoglobin drops below 8, they usually recommend supplementing the cells. Used to be they’d use an injection called ProCrit, but a few recent reports have shown a possible connection to recurrence in patients with colon and breast cancer. The alternate method to bolster the cells is with a transfusion.  So I’m trying to race time a bit here.  With 5 more Taxol infusions to go, I’m hoping the red cells hold steady and I can avoid doing anything invasive to support them.  The naturopath has loaded on a few more supplements (Vit. B6, B12, folic acid, and protein powder, rounding out that total of 10) to try to stop the downfall. It might be working.  Last week’s hemoglobin count was 8.2.

BUT, I can still walk at a pace that my children have trouble keeping up with, so, as Tony Bennet and k.d. lang sang in my ear from my iPod:  “I ain’t down yet.” And even though I’m having to supplement my eyebrows with some pencil lines now, I still look (ha!)  MAHvellous. (Especially in my blue fuzzy hat, which gives my head the shape of a gumdrop.  My daughter likes to come pet my head when I wear it.  I can’t understand why dogs like to be pet on the head.)

OK, OK, I know you’re all looking for it.

The Popsicle Report: I needed comfort food today.  Blueberry-lemon.

The grand tree outside the infusion center window has surrendered its leaves, and shows only its blanket of moss on the grey bark against the grey sky.  As I waited for the blood counts to come back, I noticed the woman across from me, getting ready to have her chest port accessed for her blood draw.  She took the characteristic pose, hands pulling down her shirt to expose the spot on her chest where the port is implanted.  On me, the port protrudes like an odd rock embedded beneath the skin.  On people, uh, better endowed, like this woman, the patient has to point out for the nurse where the port is located. This woman’s posture brought to mind those church paintings of Christ pointing to his sacred heart that I remember from my childhood. (And the way this port sometimes irritates my chest wall makes me think it’s bound in thorns.)

Then I noticed the tall distinguished man poised over the table where the puzzles are, working the pieces into place. Next to him stood his personal IV machine, which he had wheeled over from his assigned Barcalounger in another pod.  Meanwhile, the nurse worked her way around my pod, bringing her tray of cocktails, those little plastic cups with the pre-emptive meds. I wished mine contained shots of vodka instead of the steroids and Claritin, but then I figured the vodka probably wouldn’t taste right. Not even chocolate tastes right now.

As I sat observing my surroundings, I twirled the end of my pen against my temple, rather like Dumbledore and Snape in the Harry Potter books, when they wanted to remove certain thoughts and memories from their brains to be set aside in the pensieve for later viewing.  Wouldn’t that be a great trick — removing the swirling thoughts that clutter up our brains, to be kept for later or thrown out altogether.  (If you’re a fan of puppets, Harry Potter, rhythmic chant, or just general silliness, take a look at one of the Potter Pal videos on YouTube: http://www.youtube.com/watch?v=Tx1XIm6q4r4.)

I turned up the volume on the iPod today to drown out the the snarls, moans and beeps of the numerous IV machines.  ‘Twas much more pleasant to listen to The Crusaders, some Brahms liebeslieder waltzes, the Doobie Brothers’ “Takin’ It to the Streets,” Norah Jones, David Byrne (Rei Momo, his Brazilian-inflected album), Angelique Kidjo (African folk singer) backed by Carlos Santana, Nina Simone’s “Four Women”, and — had to get there eventually — the Beatles’ “My Life.”  If you haven’t seen it yet, Chris Bliss does a MAHvelous juggling routine to a Beatles tune: http://www.youtube.com/watch?v=H8f8drk5Urw

In my continuing search for meaning in this whole experience, I’ve been wondering if there’s a difference between cure and healing.  We hear lots about walking, running, racing for “the cure.” Since there are about half a dozen different types of breast cancer, it seems foolish to think there’s only one cure. My docs says we’re aiming to cure my cancer, though I don’t know how you can really be sure you’re cured except in hindsight many years later.

Dictionaries pretty much equate the terms “cure” and “healing” but the self-help literature seems to distinguish the two, with cure referring specifically to the scientific, medical process, and healing to the psychological realm.  Several of the books I’ve encountered take up the mind-body connection and speak of healing as ridding yourself of the mental burdens that led to your illness. In other words, they imply that we are responsible for developing whatever ails us.  Bernie Siegel went so far as to define a “cancer personality” — someone likely to develop cancer because of their inward characteristics and history. Caroline Myss, a “medical intuitive” and healer who wrote the once-bestselling “Anatomy of the Spirit,” goes so far as to say that people develop cancer because of unresolved issues from their lives, and specifically that women develop breast cancer for lack of nurturing themselves. There are a surprising number of people who subscribe to these ways of thinking.  (I believe it’s called “blame the victim.”)

Like those lists of risk factors for breast cancer, these descriptions don’t fit me very well either.  I don’t have psychological baggage left from childhood (unless you count having to eat liver and onions), and have not suffered great traumatic experiences that have crippled me (yes, I am indeed lucky).  If you follow Myss’ logic and look at the numbers of women who develop breast cancer (that popular 1 in 8), it would seem that a whole lot of us women need to be doing a whole lot more to nurture ourselves, and in Asian countries, where women are expected to give up themselves for their families, the rates of breast cancer should be higher than here, when indeed they are lower.

As it turns out, Bernie Siegel later retracted his definition of the cancer personality, and Caroline Myss, who now bills herself a mystic, wrote another book in which she admits that, indeed, no matter what some people try, they don’t heal (and some actually choose not to), and things like genetics and environmental influences do play a role. Her current stance on the matter seems to be — pray.

Nothing terribly mystical about that.

Dive-Bombed by a Hummingbird

I’m a bit late getting this out due to the clutter on my desk and in my brain.  I just realized it’s SEPTEMBER already, and time speeds on. The sun is out.  The mountain is out (though it looks like we’ll get rained on all holiday weekend).  And I’m waiting for the handyman to come back to finish up the jobs he started earlier today.

The Popsicle Report:   Blueberry-lemon!  On a stick. I wish I knew what brand it was because I’d sure buy these.  Despite what it sounds like, it was quite tasty.

Chemo round #8 down — a third of the way through the whole chemotherapy treatment. Four more of the Adriamycin infusions and then I switch to the Taxol for 12 weeks.  I saw my regular doc, who thinks things are going along OK.  The white cell count is up again (4.5 from last week’s 4.0), so he says I can back off the Neupogen shot to once a week.  The schedule of shots is not an exact science, but becomes whatever suits the individual patient. Fortunately I didn’t have any bone pain after the shots this past week, and the mouth sores are gone.  The red cell count is low, but not yet in need of bolstering.  It does indicate anemia, though, which leads to fatigue.  I have sporadic bouts of fatigue, but nothing incapacitating — more a sleepiness than a body-tiredness. I’m also a bit irritable, but I think that’s because it’s time for my kids to get back to school (next week!).  They’ve become rather like ferrets — all over everything, full of noise and wrangling.

I also saw the naturopath last week. No changes to his plan, except he’d like me to gain a couple pounds of “reserve” weight. (“Let’s see if we can get you into triple digits!”)  He recommended eating protein, good carbohydrates (I could easily gain pounds with just a couple doughnuts!), and “good” fats — for example, nuts, avocados, and olive oil.  Jokingly, I asked if I should just chug the oil out of the bottle.  He said (with a straight face), “Well you could, but you could also do shots.”

Imagine THAT experience.

Apparently he did shots of the stuff once when he had to gain weight for a sports team. I suppose it’s no worse than Sylvester Stallone chugging raw eggs in the first Rocky movie.

Yesterday, I treated myself to an oncology massage. With all of the events over the summer, I’ve been feeling rather like the Scarecrow in The Wizard of Oz after the flying monkeys get to him.  (“They tore out my chest and they threw it over there…”)  Mammogram, MRI, ultrasound, two biopsies, CT, bone scan, PET scan, two surgeries, physical therapy, chemotherapy (and radiation to come).  I figured I deserved it.  The oncology massage is similar to a regular massage, but lighter, and the therapist incorporated some reflexology (massage of the feet) and Reiki, a sort of laying-on of hands to open energy channels in the body (an Eastern practice).  The downside was that she had to wear gloves.  Apparently there can be some skin-to-skin transfer of the Cytoxan, the other cancer drug that I take orally every day.

A couple interesting “side-effects” of the chemo that I haven’t seen mentioned in all the information I’ve been given:

One day last week, I was standing out on the back deck talking with someone on the phone when I heard a loud buzzing and looked up to see a hummingbird hovering only a few inches from my face.  My startled movement scared it off, but later that same day, it happened again.  Loud buzzing.  Fat little bird body within inches of my face. Bold little bugger, I thought.

And then I realized — the scarf I was wearing had a large red flower on it.  He had me figured for food.

The other “side effect” occurred at the gas station.  I was waiting in line to pull up to a pump and noticed the car to my right, which was also waiting and had just stalled.  The woman driving started cranking the ignition, trying to restart the car, and while I watched, I noticed the telltale headscarf tucked neatly and completely down over her ears and the nape of  her neck.  I put down the passenger-side window and asked her if she needed help. (No way should someone have to deal with cancer, chemo AND a stalled car.  That’s just not fair.)  She thanked me but said no, that the car would start in a few minutes, and sure enough, it did.

We both rolled up to our respective pumps, and while we were waiting for the tanks to fill, she came over to me and asked if she could assume that my headscarf meant the same thing as hers — going through chemo.  I told her yes, I was going once a week and she said, “Oh, yours must be breast cancer.”  I puzzled over how she put those pieces together (maybe breast cancer is the only once-a-week regimen?), and she said she’d just finished chemo.  “Mine’s ovarian,” she said. “I’ll trade ya!”

Fortunately, I long ago developed the ability to disconnect what my brain thinks from what my mouth says at critical moments like these.  My brain said, “No way!” while my mouth changed the subject. You see, there’s a continuum of cancer. On one end are the noninvasive ones that grow slowly, can be removed easily and never return.  On the other end are ones that give little notice, grow swiftly, can’t be detected early, or are relentless, like the brain tumor that just claimed Ted Kennedy’s life.  Breast cancer has the same   stages as other types of cancer (I to IV), and even a Stage O.  Sometimes it is detected early, sometimes not, sometimes it’s aggressive, sometimes not. Ovarian cancer, on the other hand, can be fairly aggressive and is often not detected until it’s advanced, and so the fact that this woman could joke in such a way with me at the gas pump was a remarkable testament of her spirit.

When I changed the subject, we talked about wigs, insurance, and skirted across a number of other health-related topics.  She said that she knew of a number of people (“like you,” she said) who had followed all of the rules of staying in good health and ended up with cancer anyway.  As I drove away, I was both happy and horrified.  Happy that I could bond with someone just on the basis of a headscarf.  Horrified that I could bond with someone over the reason for the scarves. They mark our inclusion in a group neither of us wants to belong to.

An odd and unpredictable journey.  That’s what this is.

My Insomnia Has a Soundtrack

I had the third infusion of the Adriamycin yesterday. Scored TWO popsicles this time — one red, one pink.  Don’t know the reason, but I’m wondering what you have to do to get three.

So far — so good. I feel fine, and still have hair. (I’m slightly past the doc’s prediction of 19 days, wondering if I’m going to wake up bald tomorrow.)  I have a little swelling in my lower legs, which can be a side effect of the infusion, but could also be from this dastardly heat wave.  Ninety degrees in the shade today, temps are headed to 100 tomorrow.  Even The Mountain has the good sense to cover itself in clouds.

The meeting with the naturopath was helpful.  For those of you who were asking, naturopathy is not the same as homeopathy but there can be some crossover.  Naturopaths may recommend some homeopathic remedies, but they go beyond that into supplements, diet, exercise, lifestyle changes, etc. Many people think both disciplines are suspect, but homeopathy really does seem a weird duck to me — diluting the essence of a therapeutic substance in solutions so much that almost nothing remains of the substance itself. A naturopath is trained in working with more “natural” substances rather than the supposedly harsher, synthesized Western-style pharmaceuticals.  There are those who believe naturopathy is a better way to go, but this doc’s approach is to complement, not supplant, what I’m doing with the oncologist. He sees patients in the oncology center offices and takes a good look at the the case files and patient’s history to see what might help what the regular M.D. is doing.

What he’s suggested for me is a probiotic capsule to ease any digestive problems, fish oil, and Coenzyme Q10 to help fatigue and fortify the heart (Adriamycin can damage the heart but my oncologist says it’s rare to see that at the dosage I’m on.  Still, I have a family history of heart disease).  Beyond that it’s the stuff we already know — eat a healthy balanced diet, avoid processed foods, exercise.  He helped clarify some of the confusion around things like eating soy products and drinking alcohol.  For estrogen-positive disease, these can be a problem, but they’re OK for me apparently.  No beer though — something about the hops and fermentation.  Guess I’ll just have to drink the hard stuff.

A few days ago, I forgot to take the Ativan (the antinausea/anxiety med) before bed.  The good news:  I found out I don’t need it for nausea.  Unfortunately, the insomnia I’d been having sporadically over the past few years returned. Most of the articles the media publish tell you how to get yourself to sleep. But getting there has rarely been a problem for me; it’s staying there.

Some of you may recognize the pattern.  3 a.m.  Wide awake.  Brain spinning.  Mostly mundane brain noise — the daily task list. Oh yeah, don’t forget to set out lunch money for the kids.  Gotta call the plumber, and take the dog to the vet. And where’s that handout I need for class?

But always, ALWAYS, my insomnia comes with music.  While my daughter was preparing for her recent piano concert, it was her medley of Cole Porter pieces: Anything Goes, In the Still of the Night, and My Heart Belongs to Daddy.  This time it was Billy Joel (again).  “Shades of Gray,” which my son had been playing on the iPod dock.  Over and over again, as he likes to do.

Shades of gray, wherever I go
The more I find out, the less that I know….

I don’t know why my insomnia comes with a soundtrack.  Regardless, I don’t follow the recommendations of those who counsel about insomnia, which is to get up and do something productive with the time.  I’m much too lazy for that.  So I just lie there and eventually the music fades and I drift back to sleep.

The first naturopath I worked with suggested that I was waking because I was actually hungry and my brain was afraid it was starving so it would wake me up.  She suggested a protein snack before bed.  Nice theory, but after three nights of cheese or nuts before bed, I was still waking up and had gained weight in my butt.  Now maybe you’re all thinking, well, you could USE a few pounds, but I can tell you, NO ONE needs to gain pounds in the backside while listening to music in your own head at 3 a.m.

Anyway, I’m making a point of writing out my thoughts here before I go to bed tonight so they don’t wake me up in the dark.  If they seem a bit frenetic, maybe it’s the residual effect of the steroids before the infusion yesterday. For me, writing sure beats cleaning house.  Tonight, I’ll remember to take the Ativan.

Popsicles and Tae Kwondo

A cool beautiful evening here.  We just got back from dinner (Mexican) and the kids’ tae kwon do test, in which they earned the next color belt.  My son surprised himself by actually breaking his first board ever (with his foot).  To pass the test, all he had to do was try, and the look on his face when it actually broke was priceless.  My daughter went about her test with her usual aplomb.  The girl is formidable in sparring.  God help anyone who accosts *her* in a dark alley.  And then there’s that wicked grin she gets on her face after the battle is over.

The doc’s appt. was about 2 hours this morning.  First a blood draw.  My husband was actually glad to see the white and red blood cells slightly below normal.  He was thinking that, since I’m not sick (yet), the medicine wasn’t working.  The lowered blood counts reassured him. Odd, but true.

The oncologist asked how I felt.  He said the fatigue will be setting in slowly, and laughed when I told him about riding roller coasters. “Taking Cytoxan and riding roller coasters? Cool!” was what he said.  He also predicted that my hair would start to come out soon.  When I asked if he could estimate a time, he said “about 19 days” after chemo starts.  “About?”  Gee, could ya be any more specific?  Would that be 18 and 3/4?  19 and 1/2???  I started chemo two weeks ago.  Guess I better enjoy my hair this week.

I spent part of the afternoon searching websites for how to make a turban and how to put on a hajib — the scarf that Islamic women wear.  Turns out there’s a variety of turbans.  I don’t think I’m up to winding one on my head  like the Sikhs wear (17 yards of fabric!), but the one in Vermeer’s painting of the Girl with the Pearl Earring might work.  Look what it did for Scarlett Johanssen!  With either style, it’s the closest I’ll get to taking on a different religious practice.

Speaking of religious practice, I spoke yesterday with one of the monks, a colleague who teaches at the college I’ve been teaching at.  He has taken up praying for me, and tells me I’ll pull through this.  That prediction sounds good to me.

The weekly infusion has already taken on a predictable pattern. After checking in, I’m assigned to one of the vinyl Barcaloungers in one of the “pods” of chairs comprising the infusion center.  The nurse then asks me my birthdate — a question I have to answer often for these medical appointments — then brings me 5 pills: 2 antinausea drugs and three steroids. (I don’t care to think what my blood is comprised of currently.)  Today’s nurse was especially informative.  She told me the steroids can give some people a burst of energy (good to combat the fatigue later, I guess) that makes them do things like want to clean the house for 3 days.

I don’t think I’ll have THAT particular problem.

Then she hooked up the bag with saline and threaded it into the port on the right side of my chest.  After letting that drip in for awhile, she switched to the Adriamycin, and for the second time I watched that red liquid (the color of KoolAid) snake its way into my chest.  She brought me a popsicle to eat during the infusion (also red).  Apparently sucking on that helps reduce the chance of mouth sores, a hallmark of Adriamycin.  So I sat for about 10 minutes watching the red stuff going in my chest, and sucking on the red stuff I put in my mouth.  Nothing like color-coordinated medical treatment.  She also recommend doing a saltwater mouth rinse several times a day to prevent the mouth sores.

So my daily routine includes taking an anti-nausea drug first thing in the morning, taking my temperature, waiting half an hour then taking the Cytoxan, making sure I eat enough and drink about 2 liters of fluid during the day, doing the arm exercises, monitoring myself for anything unusual, recording input/output (to put it delicately), and now doing the mouth rinses. Another antinausea before bed, and ginger tea and peppermint tea periodically throughout the day since they’re both known to aid the tummy. Too bad I can’t get paid for taking care of myself.

On Wednesday, I’ll be meeting with the naturopathic doctor associated with the oncology clinic. Naturopaths are fairly common out here on the “left coast”.  They’re N.D., not M.D., but can function as a primary care doc and deal with alternative types of medicine — herbals, supplements, diet, etc.  This one specializes in oncology naturopathy and is spoken of highly.  I’m hoping he can help me sort through the confusion about what to take/not take during chemo and to fight cancer.  Should I eat soy products or not.  Should I take a daily vitamin or antioxidants, or not.  Is alcohol OK (now that my spouse has perfected his martini technique)? What about Coenzyme Q10? I’ve stopped researching a lot of this on the web because there’s confusing evidence on either side of the issues, and what applies to one breast cancer patient (say, a postmenopausal woman with hormone receptor-positive disease vs., oh, say, a perimenopausal 48-year-old with triple negative disease) may not be appropriate.  Too much to make sense of.

Then on Friday I’ll see a physical therapist for my left arm, to work on getting it back to pre-surgery range of motion.  I’ve regained a lot and the odd tweaks, pains and numbness have decreased considerably, so I’m happy about that.

Time to put my little warriors to bed…