Mind Matters

We're coming up on treatment day tomorrow, which reminds me that, to my chagrin, I have not posted all week. My apologies.

The question of the week has been: how did I feel after last week's treatment? The answer: WAY, way better than after conventional chemo. I still felt what I call "chemo-ish"; just very, very mildly so. Almost, but not quite, queasy, and not very focused. I was content to spend Saturday watching football, but I didn't have to. I could (and did) get out and have lunch with a friend.

I will confess to one episode of vomiting Sunday morning, but I totally have no idea where it came from. It was pretty typical chemo vomiting -- which, yes, does feel different from, say, your basic intestinal-virus or food-poisoning vomiting, in case you wanted to know -- but I had no warning or advance feelings. Pretty weird.

Feeling bad at all was something of a disappointment. I had somehow convinced myself that this treatment wouldn't have any side effects of that nature. Conversely, the side effect I've been steeling myself for -- edema in arms and legs -- hasn't appeared. Yet. In a previous study, 70% of the patients had edema, at a dose lower than I get. And my grandmother had such bad edema she had no ankles and her legs looked like an elephant's. So I don't see how I'll escape it. But you never know; my body does have a talent for doing unexpected things.

Speaking of which: this week's main feature has nothing to do with the treatment, and everything to do with bodies doing weird, unpredictable things. It seems that my mind has concentrated all its anxiety in my pelvis, resulting in extremely tense muscles throughout that area. This has been very painful and also affects, um, functions that depend on muscles being relaxed at some times and contracted at others. I'm working with various members of my medical team to manage, and ultimately banish, the pain, which varies in terms of degree, location, intensity and quality, and responds differently at different times. Sometimes drugs help -- both analgesics of varying strengths, and anxiolytics (that's your word for the day; it means "breaks up anxiety") -- and I'm exploring meditation, which is very promising. Heat, in the form of baths and a heating pad, is great for relieving the discomfort. Tonight I discovered that exercise, including ballet movements, helps a lot. I anticipate a return to my massage therapist, and I have asked about acupuncture but my doc has asked me to hold off on that for now.

Probably you have an idea that might work. Please keep it to yourself. I totally believe that mud-and-dung massages helped your Aunt Agnes overcome her crippling pain, but I'm feeling a bit flooded right now and want to keep trying the ideas we already have in a systematic way. Thank you, though.

That's all for now. I have to get up early for tomorrow's appointment at the chemo suite. Keep fingers crossed that the pharmacy has figured out what this drug is and where they keep it, and will take less time to prepare it than last week.

The Trial Comes To Order

Whatever we all did, collectively, this morning, it worked. In fact, the first reading of my blood pressure was improbably low: 111/66. I didn't say a word to the intake nurse, however. I just waited to ask the chemo nurse (Brigit, one of my favorites, an energetic sweetie) if she had the capacity to take my pressure and not record it. She totally got what I was asking and agreed to play along, but there really was no need. My pressure next read 135/83, which is more realistic for me and also well within the study parameters. One hurdle crossed.

Then it took nearly two hours for the pharmacy to send up the drug. Luckily, I had my iPad, a book (Laura Hillenbrand's The Unbroken), and this morning's New York Times, complete with crossword puzzle and Ken-Kens.

It was a totally different experience in the chemo suite today. The routines were mostly the same (there are no pre-medications needed) but it felt so different. It was all comfortable and familiar, and I was so much less apprehensive. Nevertheless, by the end of the morning I was feeling a tad sleepy and not-quite-queasy. I'm not sure if it was caused by the drug, or just a post-adrenaline reaction. Either way, it was not severe enough to prevent me from enjoying a lunch of chicken balti royal pie and chocolate custard at Pleasant House Bakery with Emily -- our last mom-daughter outing before she heads back to Pitzer tomorrow morning.

Trial Starts Friday

It looks as though I will start on the trial drug Friday morning. I am not quite sure how these decisions get made. My blood pressure is still high, just around the cutoff value. I guess we have abandoned the desire to lower the blood pressure before starting this new drug. The sooner, the better.

In fact, this morning my blood pressure had gone up from earlier in the week and was just above the cutoff value. I was seriously worried I wouldn't be able to start the trial this week. But really: how are you going to get a nice low reading when stress raises blood pressure, and you're feeling like getting a low reading is, somewhat literally, a matter of life and death? No stress there, nuh-uh. Add to the mix sending me to the chemo suite to get the reading -- yeah, the place at which I spent five solid minutes vomiting the last time I walked in the door -- and you can appreciate that maybe there was good reason this reading wasn't as low as it might be.

Nevertheless, Friday I have to have a reading that meets the criterion, and it will be taken at the chemo suite, so nurse Connie and I brainstormed strategies for keeping my pressure as low as possible. Meditation, strategic timing for taking medications, and a little bit of a fast-acting anti-anxiety drug all have their place. Plus I know all of you will be rooting for me and siphoning off my anxiety and holding it with you for a while, and that will help a lot.

(With Apologies to Newsweek) My Churn

As Leslie has noted several times, I've played the role of the optimist - hearing the "but" in doctor reports, or reminding her that Internet searches often shed more heat than light. I'm the editor who mines the good news to convey to friends and family (Leslie walked two miles today, she's back to working out with her trainer) while downplaying the flip side (she was too exhausted to make dinner afterward).

In the wake of the news that Leslie's cancer had returned, I've continued to try keeping both of us "up" - after all, with a few days' exception, Leslie is feeling pretty good at the moment.  I keep fetching the ice cream, forwarding Internet memes, urging her to get out and exercise, making decisions on my own, or even joking about our situation (obeying the dictum of Mayor Rahm who says "never let a crisis go to waste").

But, as optimism gets tempered by realism, it's been hard to escape my thoughts being like the "washing machine" at the base of a river rapid.  There, the water and rocks combine to trap anything that comes their way, big or small - sticks, trash, kayaks - and churn then constantly without release.  Things get pulled beneath the surface, out of sight, only to flash up again in the roil.

My mind pinballs among past, present and future, and it's far too easy for all three to become conflated and compressed, as though Dickens' three Christmas ghosts have descended at once and are battling for my attention.

I'll fix my focus on work, only to worry whether I ought to cancel work commitments in order to be with Leslie.  With no good way of predicting the course of her disease, though, that would be defeatist - hovering (physically and emotionally) in wait for decline.  One of the things that keeps me upbeat - thereby making me a more effective caregiver - is continuing with the things I love, including my work with amazing, creative people all over the world (I'm writing this on a flight to LA; next week is Vegas and then Munich).  Some deadlines slip as I struggle to stay motivated and focused; if I'm slow in replying to an email, you'll know what's up.  Moreover, at any moment the eddying waters can dredge up an image of my being halfway around the world when Leslie has a crisis moment.

This is as hard to write as it is to think, but often the whirlpool tosses up thoughts of a time when Leslie is no longer here. 

We've been married over 30 years and, while it's a cliche, I have no hesitation in admitting that she is my (our) better half.  If you need a pun or a run, I'm your man; if you need a faucet repaired, taxes done, a thoughtful approach to child rearing, emotional insight, a vacation planned, or consultation on developmental neuropsychology, call Leslie.

Do I want to stay in our home alone? Where would I want to live? Even if I could answer these, would I have any concept how to prepare and sell a house, pare back possessions, make a move?  Without Leslie's lead, could I overcome my social anxieties and find a community of friends?

Am I up to completing the task of raising our daughters? They're so close to "polished," but the past seven months and whatever is to come will surely lay stumbling blocks before them.

I try to command my mind to stop - Leslie's very much still here.  It's not helpful to deny the situation, but dwelling on that future blocks us from using our time to its fullest, including tapping Leslie's wisdom; she's been amazing about encouraging me to talk about my fears as well as hers.

Ghosts of the past make appearances, as well.  Leslie and I have always had a travel mantra of "leave something for next time."  I can't help but think of things we've left that now loom undone.  With over 400,000 air miles in the bank (the irony of earning a lot is that you don't really want to travel any more to spend them...), I've offered Leslie a trip anywhere in the world, but we face the conundrum that the treatment we hope will extend her life demands that she not be away from Chicago for more than a week.  Ah, well, Portland, Seattle, Vancouver and Nova Scotia are still high on our "to see" list!

There you have it; a glimpse into the mind of a cancer patient's partner.  Just this week, we engaged the services of a professional organizer, to help us declutter our home.  I wonder if she does brains.

Going To Trial

Time for a straight news post. We all need a little breather from processing emotions.

David and I met with doc yesterday to make some firm plans. I am eligible to join a clinical trial of a new drug, and that seems to be the best option. Radiation therapy would shrink the existing tumor, but another one would likely pop up in its place (or elsewhere; doc mentioned specifically a concern that metastases could occur in the upper abdomen, where they are less easy to detect through regular physical exams). We already tried the most likely, and most powerful, chemotherapy, and it didn't work. Doc was skeptical that any other chemo drugs would work, and anyway, the drug she would try if I really wanted to is not available. (Have you been reading about the drug shortages? It seems the drug manufacturers aren't making the drugs that don't have a high profit margin.) No matter; I am ruling out any treatments that have a large downside, i.e. nasty side effects, unless they have a particularly large upside. Chemo does not have this potential.

The trial that I will join is testing a novel drug that attempts to cut off the blood supply to the tumor. This is a totally different treatment approach from chemotherapy, which works by killing cells. The hope is that if this drug is effective for endometrial cancer -- and my cancer in particular -- the existing tumor will not grow further and new tumors will not develop. It is not a cure, but it could help manage my disease. I can stay on the drug as long as it works, and as long as I don't experience adverse side effects. Doc says we'll know within two months if it is working. In earlier studies, the side effects were not so bad; the most likely one is edema (swelling) of the arms and legs. The drug will be administered through my IV port once each week, taking 60 minutes the first week and 30 minutes in the succeeding weeks. This sounds like a total picnic after the 4-7 hour chemo sessions.

I had a whole bunch of lab tests yesterday to make sure I meet the criteria for the study. We had to work hard to get a blood pressure reading below the cutoff, with me imagining swimming with manatees -- yes, we did this in Cozumel and they are much more placid and soporific than dolphins -- and when that didn't work, David took me through some classic relaxation techniques from his high school theater days. Doc still wants a lower reading, to provide a cushion against what she sees as an almost certain rise with the study drug. Hopefully, I'll achieve this (with the aid of medication) in the next week or two. By that time the study drug will be in hand, and I can get started.

On Friendship

Today I am feeling particularly appreciative of the support we have gotten from friends and family. I know we've touched on this many times before in this blog, but it can't be said often enough: you are our lifeblood right now. It means so much to be able to knock on a door, pick up the phone, or dash off an email and know that a comforting and empathetic response awaits. Your words, if not your arms, wrap around us and convey a wonderful sense of support. We are held together by those among you who say, "We understand; we sense your fear; we will stand by you and help shoulder your burden; you mean so much to us."

Thank you.

In Which We Share Way Too Many Vacation Pictures

What, you say, you don't really like looking at other people's vacation photos?

Tough...it's our blog.

Setting off

Liberty of the Seas

An auspicious departure from Fort Lauderdale - skirting rainstorms but followed by a rainbow.

Shipboard 

The Royal Caribbean Liberty of the Seas is, in a word, massive.  It accommodates over 4000 passengers, offering something for everyone, from a shopping mall to a 1000-seat theater, from a climbing wall to an ice rink, from three formal dining rooms to a cupcake shop and a Ben & Jerry's.

Here's how we spent time onboard. 

Appreciating the cleaning crew's whimsy.

Sunbathing...be sure to sunscreen those soles!

Going to shows - a "Cirque du Soleil" type aerial show, "Saturday Night Fever: The Musical," a Beatles tribute band, and a clever ice show done to songs from musicals.  An ice rink...on a boat...in the Caribbean.  Really.

Challenging the onboard wave machine! Only Leslie and Emily got up on their knees.  Doing this while on blood thinners leaves you with some great souvenirs.

Formal Night - Christmas

 

Land Excursions

Cave Kayaking 

Geared up and ready to paddle.

30 minutes walk upstream through jungle.

 

Ziplining

Is this your first mission?

We interrupt this ziplining to bring you a parade of leaf-cutter ants, on the stairs to the zipline platform.

Mission Accomplished!

Swimming with Dolphins!
 

What smooth skin you have!

Winged sandals? Nope...dolphin power!

Jane...how do you stop this crazy thing?!?!

A little higher, to the right...ooh, that's the spot!