How I Feel

I’m back from Day 1 chemo. I asked for and got my preferred nurse, Marissa, and she is getting ever more efficient, cutting another 20 minutes from my time. Yay!

Since I never seem to have the energy to write on Days 2-4, here’s a description of how I am likely to feel over the weekend. (In fact, once I got to writing I decided to just give you an overview of a whole cycle.)

Right now, I mostly feel the physical effects of having 2.5 liters of fluid in my belly. It’s a little like having eaten too much at Thanksgiving, except of course it’s spread out all over the abdomen and not just in the stomach. Uncomfortable would be a good descriptor, with a little back pain thrown in for good measure. I probably won’t feel like eating too much dinner, just because of the pressure. I feel very thirsty in the aftermath of Day -- which is odd, because I’m pumped so full of fluid -- and David set me up with an Edy’s fruit bar and a glass of lemon water. And, later, a dish of the bread-and-butter pickles we just made. Very yum, but won’t help the thirst.

The chemical effects won’t set in in earnest until tomorrow morning sometime. Once they do, it will feel a bit as though I’m recovering from a bad stomach bug. I’ll sleep a lot, drifting in and out. When I’m awake, I won’t be able to concentrate much, so reading is pretty much out. I will eagerly read emails, but most likely will put off responding. I’ll listen to music or watch TV/movies/cartoons. I will feel generally unwell. The meds will prevent nausea, but I won’t have much, if any, appetite. I will try to drink a lot of fluids, because it helps the kidneys flush out the chemo drugs, but I will struggle to get anywhere close to the recommended two quarts. David will keep me supplied with diluted Gatorade, lemon-flavored water, ginger ale, limonata, aranciata, and Dang! brand butterscotch root beer. If I eat, I will probably have relatively small quantities of soft/smooth things that can be sipped. Last cycle, peach-almond smoothies were a favorite. I’ll probably drink at least one bottle of Ensure, a meal-replacement drink, because it’s an easy and tasty way to get nutrients and calories packed into a small volume. So are banana/chocolate/peanut butter milkshakes. I probably won’t really enjoy any of this food, in the conventional sense, but I know that eating will help me regain my strength sooner. I will have diarrhea – at least until I take Immodium, which I am instructed to do so as not to lose too much magnesium and potassium.

By Monday, I will probably feel somewhat better, and will continue to feel better each succeeding day. Not well, but better. I’ll start eating real food – oatmeal, scrambled eggs, well-soaked cereal, soup, mashed potatoes – in small quantities at first, then larger ones, and starting with just one item and progressing to composed meals. I’ll be able to sustain more focus, and will read again – first short stories and magazines, and of course all the Sarah Palin news (big week coming up – will she? won’t she?), and then books. By Monday or Tuesday, I will try to go out for a walk, but it will be slow and close to the house so I can bail if need be. Most of the time, sitting up will feel like too much effort, and I’ll want to recline. Luckily, David gave me a new outdoor recliner for our anniversary, so I’ll spend lots of time in it soaking up the shade on the back deck. Throughout the week I will feel varying degrees of weak and shaky, but always getting stronger. Fatigue will set in each afternoon, at the latest, and I’ll probably nap at least once each day. I won’t schedule workouts for this week, or much of anything else, but I’ll take advantage of (relative) energy spurts to walk or do some chores.

With luck, by Friday I’ll have regained enough strength to face the Day 8 chemo. Of course, I have to face it whatever my condition; it’s just easier the better I’m feeling. At first I was puzzled about why my Day 8 experience feels so much harder than Day 1. After all, it’s way shorter (four hours vs. eight) and I get just one drug and lots less fluid. Nevertheless, typically I just close my eyes and wrap up in a blanket and listen to music, and, I guess, try to avoid the whole thing. On Day 1, I’m usually pretty alert, and I chat with Marissa and generally participate more. The difference is that on Day 8 I’m depleted, even if I think I’m feeling relatively well; on Day 1, I really am rested and strong.

The Day 8 side effects are both quicker to resolve and milder. Not much nausea or appetite loss, but I feel fatigued and have the same desire to recline. By the following Wednesday, I can expect to feel pretty decent and it’s all uphill from there. I still get plenty fatigued, and need a rest if not a nap. Evenings are pretty much a lost cause. But days get better and better, and before you know it, I’m shooting layups in the gym and doing heavy yard work! The caution here is that I don’t yet have much experience with the additive effects of each cycle. I’m told that diminishing blood cell counts will eventually cause fatigue to increase and become more pervasive. On the other hand, my body is doing so much that is unexpected and doesn’t fit the usual mold that all I can think is, we shall see.

Speaking of which: my latest INR (blood clotting time measure) is still 1.3. Still hasn’t budged, despite four weeks of titrating ever-higher doses of Coumadin. My team consulted the anti-coagulation specialist, whose opinion is that probably I’m just young and active and basically healthy – you know, except for the cancer thing – and need a high dose. She suggested 10 mg daily. She didn’t see any need yet to test for weird medical conditions that promote clotting. And for those of you with more advanced knowledge of these things, no: I do not consume large quantities of kale, spinach, chard, broccoli, beef or pork liver, or any other sources of concentrated Vitamin K, as far as I know. Anyway, you all know what this means: continued Lovenox injections. In fact, the specialist said I really need to have two consecutive INRs of 2 or greater to discontinue the Lovenox. Luckily, these do not have to be a week apart. Once I hit the magic number, I can go back two or three days later and see if it persists.

Power Surge

What a great day!

Okay, the first part was a little spotty, as I had to go in for my weekly blood tests and the phlebotomist seemed slightly less than competent. But he did a fine job hitting my vein and filling two tubes, after I convinced him that he needed to double check the orders because, really, I was due to get two different tests and not just the one he was setting up for.

Then things got better. I had a terrific workout with Jessica. She had me warm up by dribbling a basketball up and down the court and shooting layups at each end. Who knew I could run? Plus, it was just a lot of fun. Jess has been ramping up my workouts since we restarted after the surgery, and it finally feels like I’m working hard again.

I thought I might crash after this longer, tougher workout, but instead I felt energized. So … in the afternoon I began thinking about the annoying branches overhanging the back garden. You might know that I come from a family of gardeners, but you might not know that we all share a fondness for pruning. And that my favorite thing to prune is trees. And that the tool of choice is a pole lopper. Wielding this tool that extends to about 15 feet takes a fair amount of strength and stamina, and I was ecstatic to find that I was up to the challenge. I spent a delightful half hour cutting back the maple and hackberry branches and letting more light into the yard.

So then I crashed, right? Nope. I still had enough energy in reserve to go to the theater. David and I saw a delightfully wacky murder mystery musical called “Murder for Two”, courtesy of my wonderful primary care doc who gave us the tickets under the theory that laughter is the best medicine.

Tomorrow is Cycle 3, Day 1. I’m really glad my chemo schedule includes a rest week, and that I’ve used it to recuperate so well. Chemo is scary; it’s hard to do this thing you know is going to make you feel really crappy for the next 10 days. So it is great to feel strong going in, and to know that as crappy as I will feel over the next 10 days, there’s a good chance that in the 10 days after that I’ll get to feeling pretty good again.

Change of Scene

I've been having some relaxation time at the family homestead in Little Compton, RI.

The weather has been mostly gorgeous, allowing me to walk, swim, and sail. Lots of family is here, including my nephew Dan, his wife Alicia, and their three adorable kids. They live in Madrid and this is the first time I've met the kids. It is a lively bilingual scene, with many of us practicing our rudimentary Spanish and five-year-old Isa happily (and competently) translating our English for her younger siblings.

I think I was happiest about going swimming. There has always been something about swimming in the ocean that feels very healing to me, and I feel great bobbing around in the surf. We had just big enough waves to play our favorite game of Overs and Unders -- which is nothing more than judging how big a wave is, and how close to you it will crest, and deciding whether to jump up and get safely carried over the top, or dive into the face before it crashes on you. We go for simple pleasures here in Little Compton. I have to say, it felt a little strange going in at first. Partly I wondered how well the waterproof covering on my dressing would hold up. Mostly, after this whole weird summer, it just felt so normal ...and that felt weird.

Some of you know that for several years I have planted a vegetable garden here. It's a great excuse to spend lots of time in this place that I love. You might be wondering how the garden fared this year? Not very well. I got four beds of potatoes planted in early May, but by the time my next planting date rolled around at Memorial Day, surgery was imminent, time and energy were short, and enthusiasm waned. David and I planted a few beans and squash and let it go at that. Chris and Caroline subsequently planted some transplants that arrived by mail. And then the hayfield overran everything.

Nevertheless, Caroline dug a decent crop of potatoes with her young cousins, and a couple of squash and quite a few beans await harvest in October. This garden has always been something of a community effort, and this year more so than ever.

On the hair watch: very little additional hair has fallen out so far this cycle, proving once again either that I continue to defy odds right and left, or that I am a worse procrastinator than previously thought.

Ubuntu

The intersection of our 30th anniversary and Leslie's illness provided our good friend, Lutheran pastor Bob Klonowski, with the theme for a reflection in his church newsletter.

Bob knows a story from Leslie's and my early days that gained new relevance this summer. Leslie and I didn't "meet cute"; it's more like we "stayed together cute," and Bob recalled how. Here's his opening line, I have a friend who got married some time ago, by accident.

Only a week or so into our dating, Leslie spent the day thinking how to break up with me. She had just ended another relationship, and wasn't ready to dive in again. But, on her way home from work, Leslie was in a small bike accident. She wasn't hurt, but her wheel was pretzeled and she was shaken. I was the only person she knew with access to a car big enough for her bike.
 
Here, let Bob take over:

They took her to his house, where his mom and dad washed and bandaged her cuts and scrapes.  And she thought, "I can't break up with this guy.  He's got such a great family.  I love them!"
 
Last week on Monday they celebrated the 30th anniversary of their marriage.
 
The story has always been a startling illustration for me of the importance of community.  We all like to think we make our own decisions, but none of us is autonomous, and we are not really as independent, as free of connection, as we like to think.  The responsibilities we have to others, and the social ripple effects of our decisions, are always there.  What decision could be more personal, more an individual matter, than whom you will marry?  But my friend's declaration - not I love you, but I love them! - recognizes there are a lot more people involved than just you and me.
 
Jesus recognized this, too.  Sometimes we think of the call to follow him as a personal or individual matter - me and Jesus - but read the gospels and see that Jesus calls us, not into individual relationship with him, but into community.  Join up with Jesus, and you're joining up with the Christian community, and also with the community of humankind and the community of the whole creation.  He loves them.
 
My friend, the one who got married by accident, was diagnosed with cancer three months ago.  She's part of our community at Faith now, included on our prayer list.  I visited her a while ago and asked if she needed anything as she goes through her therapy.
 
"Got it covered," she told me through a tired smile.  "You'd be amazed how, at a time like this, the whole community around you steps up.
 
"I love them."

As many of you know, Leslie and I are not particularly religious. If anything, I most closely identify with the Quaker faith in which I was educated. Perhaps, though, that's why Bob's words resonate so deeply - after all, it's the Society of Friends, not the Occasional Gathering of Friends or the Flashmob of Friends...

The aspects of religion that do appeal strongly to us, and that we try to live, are those that recognize our mutual interdependence - virtually every faith has some version of The Golden Rule. Similarly, I've always been drawn to the African concept of ubuntu, the closest translation for which is "I am because you are."

We fully welcome the prayers from our friends of various faiths, as well as the "warm thoughts" of the non-religious and the all-purpose "karma rockets" of my running group. You bring the full arsenal when you go to war with cancer, and all these people are saying the same thing - what I do and hope for you, I am doing for the strength of the community. If I can help you get strong again, you can be there to help others.

Today's Labs

Good news and slightly less good news today.

The good news is that, for the first time since we started measuring it in May, my CA-125 is within normal limits! “What,” I hear you asking, “is a CA-125?” It is a marker in the blood for gynecological cancers. As I understand it, it is more useful for tracking ovarian cancer, but since mine was elevated with my endometrial (uterine) cancer, we can use it.

A normal CA-125 is under 35 (and I really couldn’t tell you what the units are). At diagnosis mine was 120; after the surgery it dropped to around 50. (Actually, after surgery it first went up to 135, which worried me a lot until my doctor explained that 1) that sometimes happens because of inflammation, and 2) values can range into the thousands. Once I understood the scale, I was reassured.) Now it is 23! I am excited because this suggests the chemo is working, and it will be much easier to bear the chemo knowing it is having an effect.

Now for the slightly less good news: my INR – that pesky clotting time thing – is still only 1.3. Hasn’t budged. They are increasing my Coumadin some more, and – yup – I have to continue with the Lovenox injections. I definitely have to stop thinking about the cute and comforting way my mama rat Nibbles cuddled in the crook of my neck on my last day at school last spring…

As time since my last chemo passes, I feel better and stronger each day. Sunday I ambled; Monday I walked; today I strode energetically. I’ve gotten some chores done, such as weeding the garden and freezing blueberries for the winter. I still need a nap each afternoon, but it’s nice to feel relatively normal – even if my conception of what’s “normal” has changed radically.

Weekend Update

Here's a general update on things I've commented on or alluded to in the last few weeks.

General Status: I’m having one of those hard-to-tell-how-I-feel weekends. Definitely better than last week. I have way more energy and a brighter outlook. But it also feels physically difficult to stay upright – or even seated – for too long. Weird feeling. Yesterday felt pretty good, until I started prepping the veggies for the evening’s ratatouille. Got the veggies all peeled and cut up, but at the cost of bonking into that same unidentifiable, really awful feeling I had following last cycle’s Day 8 chemo. Aha! Maybe there’s a pattern. Conclusion: Day 8 is not as benign as it seems. Got to go gently and give myself space to recover. Luckily, my friend Katie was on hand to actually cook the ratatouille and clean up while I retired to bed.

Which brings us to ….

Sleep: This has been difficult. I’ve fallen into a pattern of waking up in the wee hours – 2-4 am – and either taking a long time to fall back asleep, or just staying awake. Or falling asleep and then waking again at 5:30. Any way you look at it, it’s not good. Amazingly, I can do this even after taking a full Ambien at bedtime. Last night I tried taking half an Ambien at bedtime and the other half when I woke up, to great success. I slept from 10:30 to 4:00, and then fell asleep again until 6:00. Yay! Fully rested.

Blood Thinners: I’m still double dipping, taking both Coumadin and Lovenox. After two weeks of increasing doses of Coumadin, my clotting time has barely edged above normal. (For those of you who like numbers, my INR – the ratio of my clotting time to normal – is only 1.3. It needs to be 2 or greater to give up the Lovenox.) You may know that Coumadin = warfarin = rat poison, and that I have a long-standing affinity for rats, including having a long line of very sweet pet rats in my classroom. I think maybe I’m fighting the Coumadin in honor of my rodent friends. However, these twice-daily Lovenox injections are truly getting old so I should get over it.

New thing: Tingly feet (= neuropathy). This is one side effect of the chemo that might not go away after I finish.

Hair: Hair loss has been slow-to-nil in the last few days. The hair has thinned and the hairline receded, but it is decidedly there. Do not, however, be deceived. I fully expect it will start falling out again by Thursday or Friday at the latest. And that shortly thereafter I’ll decide to shave the rest off. We shall see. (For comparison, here is a picture of me pre-chemo.)

It's Been a Quiet Week ...

… in Cancerland. At first, recovery from Day 1 seemed to go more smoothly and quickly than in the first cycle. As the week wore on, the additive effects of cycles began to show themselves. I’ve felt quite shaky and fatigued for much of the week. Overlaying this was a lassitude born of the general overwhelmingness of my situation. A very burny, acidy stomach turned my disposition equally sour. With the help of my health care team I’ve addressed these “speed bumps”, as chemo nurse Connie calls such things, and feel as though I am on the upswing.

This afternoon I have the customary achy, distended belly after Day 8 chemo, though it’s not so bad now. The nurse administering my chemo today lacked Marissa’s efficiency and familiarity. I learned how much I’ve come to lean on Marissa’s calm command, and really wish I could have her every time.

Connie reminded me today that nothing about this is entirely predictable. (It’s almost as if she had read my Carpe Diem post!). She encouraged me not to make too many or too big plans, but to keep my ambitions in check because I’ll never know when I’ll have the energy and impetus to achieve what I set out to do. David and I liked her imagery. “You,” she said, “are someone who likes to have her ducks in a row. And now someone has come along and kicked your ducks.”

The Circle of Love

Well … Now that I’m done blubbering over David’s post, I can write one of my own.

He omitted that those vows were preceded by “As I give you this ring, so I promise …” and ended with “… and in understanding, to love.” The ring embodied our promise of an ever-growing, ever-changing dynamic that we hoped would always circle around a fundamental essence.

How were we so impossibly wise at 24?

I totally concur with David: it’s sometimes easier to love and to give than to grow and to understand. Not just in our current situation, but throughout life. Sometimes, I suspect, situations like ours actually make it easier. I know that the last months have helped me to reflect on – to understand – why I love David so deeply.

It is a small tragedy that it took these horrible circumstances to bring that out. Please: today, think of someone you love, and try to put into words why you love them. If you can say it to them, all the better. If not, I hope the exercise enriches your love, and that in turn you give, grow, understand, and love some more.

It Was 30 Years Ago Today...

30 years ago today, Leslie and I stood on the garden steps of Cronkhite Graduate Center at Harvard, and promised "to love, and in loving to give, and in giving to grow, and in growing to understand."  (I can remember that word for word after 30 years, but not what I just had for breakfast.)


Leslie swears that we exchanged another set of vows that day, including the more traditional "in sickness and in health."  I don't remember that (toast and blueberries), but I am willing to stipulate to it, especially now.  


In many ways, the two vows are inextricable, since nothing in our 30 years has demanded loving, giving, growing and understanding so much as facing cancer.


Loving and giving have been easy -- really just a little more of the usual.  Fetching a cup of tea, holding hands during chemo, making meals that won't necessarily get eaten, cutting back on travel.


Growing and understanding are more challenging, just trying to take in an ever-changing and never-certain situation that accelerated from "fine" to "far from it" in just a dozen weeks.  We're both still learning the right things to say and when simply to sit in silence, the balance between solicitousness and hovering, when to seek out information and when what's on the Internet is decidedly "TMI," and how to accept others' generosity.


We've been helped in our growth and understanding by wonderful friends, supportive family, and the two best things to come from our marriage -- Caroline and Emily, who have weathered our aestatem horribilis (making this up...forgive bad Latin) with grace, patience and humor.


This weekend, I was listening to my friend Ian's podcast, How to Do Everything.  One expert -- a stuntman talking about the unauthorized cross-country Cannonball Run auto race -- described out-driving his headlights at 150 miles per hour.  That's what "understanding" feels like right now -- the bumps and curves arrive faster than they can be illuminated, requiring that we shift focus from down the road.


Before Leslie was diagnosed, I was planning a surprise trip to the Pacific Northwest for our anniversary.  Tonight, we'll just have a quiet celebration -- scrambled eggs may replace fresh salmon, Gatorade may stand in for a Portland microbrew, a walk around the block instead of a hike in the Cascades.  


Washington and Oregon will still be there next year (unless we've turned them over to the Chinese as collateral), so we'll just trust they're out there, beyond the range of the headlights.


In the meantime, the promise still holds, Leslie.  I love you.

Chemo: Cycle 2, Day 1

I goofed last time I described the Day 1 chemo (aka “Big Bad Chemo Day” according to friend, current houseguest and all-around wonderful person Katie). I don’t get three liters of liquid poured into my body during the day. It’s 4.5 liters, split about evenly between the veins and the belly. The way it breaks down is (in order): one liter saline via IV plus Taxol in 250 ml saline, half a liter of saline IP (intraperitoneally), Cisplatin in one liter of saline IP, the rest of the liter of IP saline, and finally one more liter of saline IV. The extra 250 ml saline comes from flushing the Taxol and Cisplatin lines, because really, it would be a shame to waste all that good stuff. Or something.

In case you are having trouble imagining what these volumes look like, here’s a view of the pole holding some of the bags. The Cisplatin is light-sensitive, so it is covered by the brown bag. (This also means that I become light-sensitive when it is in me, and I need to be vigilant about wearing sunscreen.)

Yes, the 2.25 liters of fluid in the belly feels uncomfortable. And also leaves me looking more pregnant than Sarah Palin did three weeks before she claims to have delivered baby Trig.

Since I’ve demonstrated no allergies to Taxol, the nurse who administers my chemo (Marissa) has been able to streamline and telescope the process. We knocked 35 minutes off of Cycle 1’s time! In at 7:45, chemo started about 8:30, and out the door at 3:45.

At the end of the day, I totaled up all the drugs that have entered my body today. Here’s the rundown:

At home (includes prescription and OTC drugs, including Tylenol and multivitamin): one injectable, one inhalant, and seven oral (Total: 9)

Before chemo: three oral anti-nausea drugs and two IV injections (prophylactic Benadryl and Pepcid) (Total: 5)

During chemo: Taxol and Cisplatin (Total: 2)

After chemo: heparin to flush the IV port and IP tube (Total: 1)

Yes, friends, that is a grand total of 17 drugs that have entered my body today. If I can’t get to sleep – and as tired as I am, some of these drugs make me feel pretty wired, so it’s a real possibility – I will take a sleeping pill and up that to 18. Properly, I should count my prescription eye drops too; that makes 19. Surely I can find one more drug to make it a nice round number…

Briefly: hair loss is slowing down, leaving me for now with a thin but nice-looking head of hair. Chemo nurse Connie says it will speed up again, and that it will start falling out in clumps. She wasn't able to predict when. And based on my experience from Cycle 1, I expect to feel pretty cruddy over the next few days, but basically getting better each day. Right now, I feel surprisingly good, aside from the belly discomfort.

UPDATE: I did take the sleeping pill and by 5:30 am I was developing a migraine. So the migraine medication took me to 20 different drugs in a 24-hour period. That's disturbing ....

Me vs. Cat (ctd)

I've pulled into the lead. Nora is enjoying this process more than I am.

Dang

No reprieve from the Lovenox injections this week. My blood test yesterday -- in keeping with my body’s apparent propensity to do weird things with respect to clotting -- registered virtually no effect from the Coumadin I took over the previous five days. So we are trying again, doubling the Coumadin dose … and, of course, continuing the Lovenox until we get a blood result indicating the Coumadin has reached therapeutic levels. Stay tuned for next week's results.

In happier news, the latest heat wave has broken and temperatures in the low 80’s are forecast for the foreseeable future. It’s nice to once again sit out on the back porch, with a gentle breeze and the prospect of a comfortable day ahead. And you know how I’m going to spend it, right? Yup, a nice walk by the lake. One of these days, if I can solve the waterproofing problem adequately, I might even go for a swim.

And in other happy news, last night I had my first evening out since the surgery! David, Emily, friend Katie and I traveled up to Evanston to see a tribute to Broadway musicals staged by the very talented students at Northwestern University. (We are forever grateful to my nephew Gaby for matriculating there and introducing us to this gem of a resource.) It was, no more and no less, a goody bag of songs from (mostly) Tony-award-winning musicals from Cabaret and later, presented with introductory bridges and modest staging and costuming. Just the right thing.

Less Fluffy, but Cleaner

Hair loss is accelerating. Today I pulled two large hairballs out of the shower drain. And yet … if you hadn’t seen me in a while you might not notice much difference. I can tell that it’s thinner and shorter, but the casual observer certainly wouldn’t peg me for a chemo patient. Yet. I keep wondering which day it will be. Tomorrow? Next cycle? Time will tell.

One silver lining to the hair loss: I am cleaner than I have been at any time in the last two months, i.e. since my surgery. The easiest way to get rid of the loosening hairs is to shower, so I have had a record three days in a row of showers.

“Eeewww,” I hear you say. “Don’t you usually shower each day?” Well, yes, I used to. Like many things in my life, taking a shower is harder than it used to be. It requires waterproofing the Hickman line through which I receive my intraperitoneal chemo. This is a tube, about the diameter of IV tubing, that runs into my belly and is sutured to my skin, and then covered by a dressing. Waterproofing it can be accomplished one of two ways: with a patch of adhesive film called Tegaderm (if you’ve had an IV lately, this is the stuff that secured it in place), or by taping plastic wrap securely on all four sides. It’s tricky to position the Tegaderm, which is just slightly larger than the dressing, and the taped plastic almost always leaks. One way or another the dressing needs to be changed afterwards. So, it’s not as easy as just jumping into the shower whenever I feel like it.

Hair loss: Me vs Cat

Nora-the-cat and I had a hair-brushing party on the back porch today. So far, she's winning. I think.