Loose Strife

Doesn’t the word “relax” look like the name of a drug? “RelaX ™, the new treatment by ABC pharmaceuticals, has been approved by the FDA for just about everything.”
Laura’s been doing a lot of resting, especially since chemo. But this is now day +7 after chemo and she’s definitely in better shape. In fact, when I called her this afternoon she said, “I’m not tired. And I don’t know what to do.” That’s a milestone.
Laura was feeling so well this morning that we drove into town (Shelburne Falls) to do some shopping. It’s true that she’s not as tired as she’s been, but she still needs lots of good rest. Since her back problems are such that she’ll probably continue to sleep in a chair for the foreseeable future, it was time to fix her sleeping arrangements. For at least 2 months she’s been sleeping in a firm, undersized recliner that I picked up from my great aunt many years ago. It has never been very comfortable. So it was time for a change. The rule in recliners seems to be: the more hideous, the more comfortable. We bought a very hideous chair. Laura says we’ll be more motivated to get rid of it when she doesn’t need it anymore.

Saturday was yet another hot and bright day — not exactly what you expect for October in Ashfield. But after two months, it looks like the rain might finally be coming to cool us down and get Autumn going.
About 70 people came to our house for a party of sorts — many with kids in tow. There were bands of children running all about, some diving across the guest beds in the sugar house, some fishing for frogs in the pond, others rolling down the hill or pretending to drive a tractor.
Laura rested much of the time, but came out to visit every now and then. I hope it felt as good for her as it did to me to see so many friends — old and new neighbors, parents of Lily and Naomi’s friends, folks from work. Suzy, a friend of ours from college days, and her family drove 4 hours from Ithaca!
Laura’s decision to have the shindig despite herself must say something about her sense of longing to connect with friends and feel better. So thank you thank you to everyone who came and made it such a happy day!
For those who want an update on Laura, I must tell you that her condition is much the same. (Apologies in advance for the unpleasant topic.) Laura’s been throwing up every morning for weeks now and it seems that the chemo hasn’t changed or worsened that, but just left her more run down, sick to her stomach and uninterested in eating. The rest of her day is usually uneventful and spent resting. But she probably hasn’t had a sound sleep for quite some time because she sleeps in a recliner (originally due to back pain (which has lessened) and now due breathing troubles related to fluid around her lungs).
Vomiting daily for a long time can really knock you out. It’s exhausting and causes, I think, a lot of anxiety about the inevitability of it happening again. Strangely, she usually throws up on an empty stomach early in the morning. Her doctor doesn’t understand what is the cause and it’s hard to blame the chemo since she’s experiencing essentially the same symptom as before chemo began. It’s unlikely to be a reaction to the pain medicine and in any case her doctor didn’t want to experiment with alternative pain meds at the same time that Laura began chemo, since that could cause additional complications. Unfortunately, none of the anti-nausea drugs seem to work. Or maybe they do work, except for early morning. In the end, the fact is that she’s wiped out and it’s tough knowing that it’s somehow related to the cancer, but not knowing how.
At least that’s the case for me. For Laura, it’s probably a much simpler matter. She’s sick. Period. So she rests.
The other day when we were together as we usually are in the oncologist’s office, Laura sat with her eyes closed breathing slowly as she quietly listened. I had just finished working through a list of questions from my notebook about treatment decisions. The doctor sort of smiled and commented that we clearly are dealing with cancer in almost opposite ways. I like to think that the time I spend collecting information, reading books on cancer, talking with other cancer patients, and discussing issues with doctors somehow relieves a great burden. But I’m not so sure that my other half, the Zen half, of this marriage is so relieved.

Finally, some administrative topics. I should tell you that Laura doesn’t actually read this blog, but I collect any comments that people leave for her. She also isn’t reading email on a regular basis (her email address is laura (@) dizz.org ); maybe once every 3-5 days she checks some email, but don’t expect a reply. Last, for those of you who are reading this via email, keep in mind that what you’re reading is usually about a day late. I typically post to the website late at night and the email service that distributes new posts seems to send out the emails some time around 6-7pm, which is usually 18-20 hours after I post. I don’t think there’s anything I can do about it. For most of you, it doesn’t matter anyway.

Right now Laura’s really exhausted. When I got home this evening she said, “I feel like I was hit by a train today.” My mother, who has thankfully stayed with us for the past 2 weeks, was frightened when Laura almost fainted late this morning. We’ve been trying to get fluids and calories into her. The breakfast drink powder stuff is Laura’s meal-in-a-cup for now. Hopefully she just needs to equalize her inputs.
She said to me this evening that she did not want to cancel the party on Saturday. So there you have it. Train is coming.

Laura began chemotherapy today. The 2nd opinion oncologist from Dana Farber finally made contact this morning and agreed with the treatment plan. So Laura spent the afternoon starting a chemotherapy treatment that will last through the end of the year and is administered every three weeks. She is taking “AC”, which is a combination of two drugs, Doxorubicin (Adriamycin) and Cyclophosphamide. This is one of the standard first line chemo combinations for breast cancer.
The anxiety leading up to this was far greater than the actual experience. Laura was gratefully relaxed and comfortable throughout. In fact, she slept most of the 4 1/2 hours that she sat in the “chemo room”. She rested on the way home and has been sleeping soundly since after dinner. So besides fatigue, probably partly due to the exhaustion effect after the end of days of anxious waiting, she seems to be doing pretty well.
Keep sending your good vibes her way. This afternoon as I sat with Laura I was reading more of Dr Susan Love’s Breast Book and after the chemo section there is some discussion about the validity of various alternative and complementary therapies — from prayer to crystals to mistletoe. (Strange enough, the NIH is indeed sponsoring clinical trials on the use of mistletoe.) Anyway, my impression was that the most important complementary “therapy” is a patient with a good attitude. This may be due to the comfort of knowing that people are praying for her, the confidence gained from a cancer support group, the calming effect of visualization or meditation or laughter, etc. At the very least, this sort of thing makes someone with cancer feel better in their daily life. But beyond that, there have been repeated clinical trials that show that the power of the mind can statistically improve treatment outcome, delay recurrence, and extend life. So if you were wondering what you can do to help, now you’ve got a lead.
By the way, there have been clinical trials that also show that the mind can have amazing negative effects, too. In a clinical trial in which men were given a chemotherapy placebo, 30% of them lost their hair!

[ Ray’s going to be pissed off with me for sharing this, but hey, we all need some levity around here and, Ray, almost nobody from Ashfield reads this blog…. ]
My neighbor, Ray, has helped me out too many times in the last year. Somehow I keep getting my tractors stuck in the mud or on rocks. In my defense, the old owner of my place said to me, “if you don’t get your tractor stuck, you’re not working hard enough.” Or maybe I’m just an idiot. Anyway, that’s the set up.
This afternoon just after Laura and I get home from the oncologist appointment, Ray stops by to talk about some painting. He leaves to go out to his truck and then comes back. He says, “You’re not going to believe this,” and mutters something about one-upping me. We walk around the house to the road. At first his truck is nowhere to be seen. And then I spot it, across the street, across the field, and nose first in my creek. Laura had heard the crash from inside, while Ray and I had been busy talking. The truck had rolled down the slope and threaded itself between two trees with not much more than a foot on either side.
Here’s a pick as he’s jacking up the rear to get some planks under the wheels.

We used my old International Harvester to drag it out. Hey, it’s actually good for something!
Amazingly, it looks like the only major damage is a cut brake line.

Laura thinks that a move to chemo is inevitable at this point. I agree that we seem to have both come around to it. Just the same, we’ll be in touch with our “2nd opinion” oncologist in Boston hopefully tomorrow before making the next move.
We thought that hormone therapy hadn’t been given enough time. But the argument in favor of changing treatment is that typically slow growing cancer cells are noticeably progressing over a relatively short period of time. While there’s no change in the cancer in her bones in her upper body, the radiologist reports that there was “definitely progression” of “extensive” metastases in her pelvic area. Maybe more importantly, the fluid in her chest is now so significant that she can’t lie down in bed and breathe properly (Laura sleeps in a recliner). When we went back to see her oncologist again this afternoon, she described the difference from two months ago as “striking”. (I can’t explain why this seems to conflict with several xrays taken during the last month that I wrote about previously, but the CT scan is taken as the better test.) This fluid isn’t itself threatening because it can be easily drained with a needle. But it undeniably indicates progression. Her oncologist argued that the issue isn’t whether you call it a small or big progression, which is maybe debatable. It’s simply an issue of whether the current treatment is working sufficiently, which it appears not to be.
So barring any contrary opinions from the 2nd doc, moving to chemo seems to be prudent.

Some folks are wondering why this chemotherapy decision is so important. Since most of us associate chemo as the standard cancer treatment, isn’t this expected? Well, the answer is mostly simple, but slightly complicated.
Here’s a little cancer school. When cancer spreads to other organs, the cancer cells that have invaded are still of the type where the cancer originated, i.e. the breast. So even though the cancer is in, for example, her bones, it’s still breast cancer. Now most breast, prostate, and ovarian cancers are dependent on hormones (estrogen or testosterone) for survival. This has led to successful treatments that involve various ways of blocking hormones.
It’s very ironic, but the primary treatment for early stage breast cancer is typically harsher than for metastatic disease. Early stage treatment usually involves surgery to remove the tumor and possibly the breast, radiation to the tumor site, chemotherapy, and finally hormone therapy. All this is done to try to cure cancer by physically removing as much of the cancer as possible and beating down the few remaining cancerous cells to minimize the chance of recurrence. However, treating advanced cancer (“mets”) is different. The aim is to keep symptoms under control, keep the cancer from spreading (but it can’t be completely eliminated), and keep Laura as happy and healthy for as long as possible. As a result, it’s actually common to use hormone therapy as the primary treatment. It has minimal side effects and it’s effective in most women. If it doesn’t work then that means that treatment options and future successes are more difficult. So the success or failure of hormone therapy for people with mets is a big deal.
Beyond that, this is just a big deal from an emotional perspective. Statistically speaking, most mets to bone and “soft tissue” (like pleura) are slow growing. And cancer like Laura’s that was tested as being so-called ER+ (referring to estrogen receptors) are responsive to hormone therapy. We were also told that hormone therapy is slower acting, so we assumed that a poor scan after just 6 weeks of treatment would not alter her treatment. Another point is that there isn’t just one hormone treatment: there are many — so we also figured that one failure would mean that she would try another. In short we were expecting a relatively slow pace for treatment with time for deliberate experimentation of multiple hormone therapies if there were difficulties. Since that didn’t come to pass, it’s been a shock.
Lastly, chemotherapy is just plain frightening. Chemo is a type of poison that attacks rapidly multiplying cells in the body — mostly indiscriminately (although there are some emerging “targeted” drugs). This means that all such cells — like white blood cells and hair — along with cancer cells are killed. Administration of chemo involves sitting in a soft chair for several hours as the drugs slowly drip into an IV. Chemo is a nasty SOB. And Laura is pretty freaked out over it. Optimistically, there are augmenting drugs to minimize the side effects and the treatment doesn’t last forever, but that doesn’t make it more desirable.

You know what they say: no news is good news? With cancer, the opposite is true, too.
We were driving to the hospital for Laura’s port surgery on Friday morning when we got a call from her oncologist’s office asking for Laura to come in to talk with the doctor after the surgery. We now have enough experience to know what those calls mean. Since Laura had just been in the hospital the previous day for a full body CT scan, we knew there was news. And news is bad news.
In short, although Laura’s only been on hormone therapy for about 7 weeks, her oncologist is concerned that her cancer is not responding and so she has recommended a change in treatment to chemotherapy starting this coming week. This has struck us pretty hard. Six weeks ago we were told by an expert breast cancer oncologist at the Dana Farber that Laura’s hormone treatment would put her cancer into remission for “a very long time”. And since Laura is just now starting to feel better after a month of pain and side effects… well, this is like a slap in the face.
The details are that the number of small “bony metastases” has increased, the fluid around her lungs (pleural effusion) is larger and clearly evident on both sides, and spots were found on her ovaries (which was new because that region hadn’t been scanned before). In truth, the progression is actually pretty modest. Nevertheless, her oncologist wanted to see things either stay the same or get better — not get worse. There were good results, too. Laura’s major organs — her brain, lungs, and liver — are all cancer free.
We left the office on Friday afternoon shell shocked, but also full of questions, doubts, skepticism, and disbelief. Some of that has subsided as I’ve had a chance to do more reading about treatment options. Laura’s bitter that the doctor ruined her weekend. We still have questions and we’ll need to decide if we should get additional opinions: the main issue being whether all hormone therapy options have been adequately considered. So the next treatment decision is not certain yet, but I’ll post more about this in the next few days.
PS. The port surgery went fine. Laura now has a little bump in front of her left shoulder where a pin prick is all it takes to access a major vein. Right now she’s been resting a lot and worrying about the next step. Lily is literally a happy camper — spending an overnight with a friend in Northampton. This evening Naomi pulled on her red “Cowboy Small” boots, “strummed” my guitar, and sang Home On The Range for us about seven times.

Laura and I were toying with the idea of having an open house, belated housewarming party on the weekend of the Ashfield Fall Festival. But we weren’t sure she’d be up to it. Well Laura’s doing better and she told me on Thursday that we should go ahead and do it. So it shall be!
I’ve invited all of our old neighbors from Northampton, colleagues from work in Amherst, all of Laura’s “mom’s group” friends, our new neighbors and families from Ashfield preschool!
If I missed you and you want to come, here’s the invitation where you can sign yourself up. (Mom’s group friends, as of this writing I haven’t typed in your emails, yet. Be patient.)
I included a poem from Mary Oliver that I thought was apropos. Here it is:

Another year gone, leaving everywhere
its rich spiced residues: vines, leaves,
the uneaten fruits crumbling damply
in the shadows, unmattering back
from the particular island
of this summer, this NOW, that now is nowhere
except underfoot, moldering
in that black subterranean castle
of unobservable mysteries – – -roots and sealed seeds
and the wanderings of water. This
I try to remember when time’s measure
painfully chafes, for instance when autumn
flares out at the last, boisterous and like us longing
to stay – – – how everything lives, shifting
from one bright vision to another, forever
in these momentary pastures.

Quick update to say that the swallowing test on Thursday didn’t indicate any tumors or other problems. So it’s still a mystery why Laura’s throwing up every morning. May be a drug reaction.