Signposts in the War Zone

La jungle de Langkawi

Image via Wikipedia

When describing the emotional effects of getting a cancer diagnosis, Michael Lerner of the Commonweal Cancer Help Program put it this way: “Receiving a cancer diagnosis is like a soldier being dropped into a jungle war zone without a map, compass or training.”

An apt description.

Except that a soldier at least has weapons.

Thankfully, in the jungle war zone of cancer are guides, who appear in various forms: the oncologists and radiation specialists who direct your treatment, the infusion nurses who explain what will happen along the way, fellow patients and cancer survivors who can tell you their stories and really understand what you might be experiencing. They have cleared your path through the jungle.

But also along that path are a variety of signposts, some helpful, some not, and it is often only in hindsight that the value of those signposts is clear.

Unfortunately, some of the signs that the experts post on the jungle path point the wrong way.  For example, a recent report from the Yale Cancer Center determined that between 10% and 20% of breast cancers classified as estrogen-receptor-negative might actually be positive. In an already chaotic landscape full of noise and confusion, such a misdiagnosis only heightens your fear and sense of helplessness, and can add a hefty measure of anger that you carry with you as you retreat to find the right path.

At other times, a signpost might be erected only to be taken down later on. Earlier this year, the FDA revoked its approval of Avastin for patients with breast cancer, saying that it was not safe or effective.  Avastin is a chemotherapy drug used to treat a variety of cancers, but according to the FDA, the risk-benefit ratio for those with breast cancer doesn’t merit use of the drug. So those who had luck in following this signpost no longer are able to, and that includes the women with triple-negative cancer who did benefit from its use. This dilemma, however, applies only to women on the jungle path in the U.S.  Avastin is still approved for use in breast cancer patients in 84 other countries.

Sometimes, a signpost is erected too soon and serves only to provoke anxiety. A report from the UCLA Medical Center links high levels of stress to the spread of cancer. Besides inducing more stress about stress, the additional irony is that this signpost is only for mice as yet, not humans. So too for the signposts about the effects of ACE inhibitors and beta-blockers and chondroitin sulfate.

There’s something to be said for posting signs of hope along the path, as these reports do with their results. But with that hope comes the risk of disappointment when the findings of further studies serve to dismantle these signposts.

And always, along any path, some signposts might even be missed.  Back in June, a briefing in the journal Cancer reported that almost half of women with advanced breast cancer over the age of 65 “are not receiving post-mastectomy radiation treatment, despite the publication of major guidelines recommending the therapy.”

On my particular path through the jungle, two signposts directed the type and frequency of my chemotherapy.  At the time I underwent chemo, the largest signpost read ACT – Adriamycin, Cytoxan, and Taxol – the only chemo cocktail available for those of us with triple-negative disease.  By the time I had chemotherapy, however, a new signpost had been added to this one, and it read “dose-dense therapy,” a different way of administering the drugs.  Instead of receiving one large dose of drugs every 3 weeks, as is customary for many types of cancer, I received a smaller dose every week for 24 weeks.  The premise of this “metronomic” dosing is that the cancer would have less of a chance to regenerate with a steadier dose of drugs and the side effects would be minimized. I followed these signposts because my guide, my oncologist, pointed me that way.

In hindsight, it’s been a relief to find that these two signposts did indeed have merit.  A study of Adriamycin and Cytoxan, from a group of drugs called anthracyclines, used in conjunction with a taxane drug are an effective treatment for triple-negative disease, but not for other types of breast cancer. The review noted that the combination works best in adjuvant treatment—that is, chemo after surgery (rather than before) – the approach the doctors used for me. Another study determined that dose-dense chemotherapy is most effective for hormone-negative breast cancer, with better overall and disease-free survival. These studies validated the merit of two of the signposts on my path. With a sigh of relief, I can walk a little taller on the road.

Those of us affected by cancer, either directly or indirectly, will always be in the jungle because cancer and the treatments for it are always changing, always confusing, and it’s difficult to get your bearings. We note the signposts and choose the direction, our only weapons the health care workers who point the way and our own stamina and determination.

Wegweiser im Bramwald

Image via Wikipedia


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…

The Poet Is Wrong; June Was the Cruelest Month

Just talked to the surgeon about getting this drain out of my side.  The surgery site is still draining as before, but we need to get the chemo started.  So the plan for now is to remove the drain next Monday, and also start the chemo on Monday (July 6). Gee, what a day to look forward to!

I met with the oncologist, Dr. L, yesterday.  He can work with the doctor we saw in Seattle to do either the once-a-week treatment (lower dose) or every-2-week-treatment.  The difference in the total amount of chemo is slight, and no one can tell me what my own experience with this will be, so it’s up to me to choose which route to go.  The doc in Seattle seems to think the once-a-week is better tolerated, but Dr. L pointed out that it means twice as many trips (and the psychological preparation needed for those), and that protocol hasn’t been tested in a clinical trial to compare it to the 2-week regimen.  So, I get to pick, but have no idea what will be better, given that I have no clue what the effects will be.

I find it strangely reassuring to talk with the medical people, because they talk about this like it is a treatable illness — not the big black hole that I fear when I’m lying awake at 3 a.m.  Yes, there is life after, and even during, chemo.  (The nurse told me a story of a woman who, while on chemo, went to a tanning bed to prepare for a trip to Mexico and got badly sunburned.  OK, I know enough to stay away from tanning beds, but I was delighted to think that trips to exotic places may be possible during this time.  My husband does keep asking me where I want to go!)  And yes, there is life after, and even with cancer.

Now ya’ll just have to keep reminding me of that when things get rough.

The good news is that the bone scan, CT of the abdomen/chest, and the PET scan were all negative — meaning there’s no evidence of spread beyond the nodes, at least not that they can see.  (Microscopic spread can’t really be tracked in any way.) OTOH, I was relying on those mammograms too, so I don’t know how much stock to put in these findings.  Still, I’m glad for that news.  The surgeon was glad too, since, as he put it, it was about time I got some good news.  I told him that I was starting to think that maybe this is payback for something I did in a previous life.  He asked, “Well, was it?”  I said, “I can’t recall!”

Maybe I should call on Shirley McLaine to help me channel previous lives???


Make That a Double Martini Too

Though it’s the end of the day here, I have some energy to post an update. Maybe that energy is the result of snoozing through a part of the day in the hospital during the port implant and afterwards.

Yesterday, we met with a breast specialist at the Seattle Cancer Care Alliance, which is part of the Fred Hutchinson Cancer Research center, and is affiliated with the University of Washington.  We took along all the reports and images and spent quite a bit of time talking with her.  She concurs with the plan of the oncologist here as far as appropriate treatment:  standard course of chemotherapy (adriamycin, cyclophosphamide and taxol), followed by radiation.  She will connect with him to discuss the plan.

Though there is a variety of other treatments for different kinds of breast cancer, this is the standard for people in my situation.  And though there are clinical trials for other types/stages of breast cancer, currently there aren’t any that I could participate in.  The only details we need to pin down are when to start the chemotherapy (I still have the drain tube in since the surgery site is still draining, and that needs to heal since chemotherapy disrupts tissue healing), and the frequency and dose of treatment.  The usual approach is a larger dose every other week, but this doc is working with a group that gets a smaller dose once a week.  The idea is the more frequent, smaller doses are better tolerated and the drug levels remain more constant. The total amount of chemo ends up being the same.  We’ll discuss this with the local oncologist when we meet with him on Monday.

It was good to have the approach further discussed and clarified by the doc in Seattle. It helps us see the path.  I couldn’t help but express my frustration to her, though — that frustration coming from the fact that I’ve done everything I should have done to stay healthy, and except for last year, religiously followed the recommendation for yearly exams/mammograms.  Even the mammogram earlier this month didn’t show much of the problem, and when my husband saw the surgical pathology report, he said, “This must have been going on for a long time.”  So why didn’t the recommended tool catch it sooner?????  And with recent reports about mammograms and self-exams potentially not being so good at picking up problems in dense tissue like mine — why isn’t there a better way?  She understood my frustration and said, “Well, right now, this is the best we have.”

Other frustrations come from the fact that there are clinical trials for other types of this disease, and even for this particular type at different stages (before surgery is done, and after it’s metastasized), but there’s no clinical trials anywhere for people in my position — after surgery.  If we’d had any idea how extensive this was, we might have done chemotherapy first, then surgery.  But no one anticipated the spread, so we followed the usual path.

But I also have to say that I have tremendous appreciation and respect for the majority of people working in medical fields. (I’m also VERY grateful to have good health insurance.) During this frightening time, I’ve had excellent care and compassionate people helping me. (Of course it helps to have a spouse on the inside, but I don’t get the sense that their behavior would be vastly different for the average Jane.) These people are doing courageous things to take care of others every day.  But still, we have such a long way to go in solving so many health issues. It’s encouraging to see the improvements, even in chemo and radiation, but we’ve still got such a long, long way to go, with this and many other illnesses.

Anyway, for tonight I’m doing OK, even though I ‘m on a restricted diet (no sugars of any kind, including fruit, so I had to forego the beautiful strawberries we bought on the way home from the hospital). Tomorrow is the PET scan.  Let’s hope for the best.

And tomorrow night, I intend to have a martini and double dessert!