Cycle 4: Medical Update

Today I had a Cycle 4 visit with my doctor. Everything is looking pretty good! She was very pleased with how everything feels internally – “like normal!” she said. (I assume that means ‘normal, considering that a bunch of pieces have been removed.’) My CA-125 – the blood marker for gynecological cancers - is holding steady at 17, well within the normal range. My INR (the blood-clotting thing) is staying well above 2, as it should, so I’ll continue on the current dose of Coumadin (15 mg three times a week, 12.5mg the other four days, which feels like a LOT, considering we started at 2.5mg ….)

As for blood counts, the neutrophils (= infection fighters) are still up, and the red blood cells (= oxygen ferries) are still down. The latter explains the increasing fatigue I am feeling. This is all perfectly consistent with my treatment, and my doc assures me the fatigue will continue to get worse. However, everyone on my team sounds very pleased that I am continuing to walk as much as possible. Indeed, they seem to have joined me in using it as a metric for how well or bad I am feeling and doing.

I did want to get the answer to a question I hear frequently: “Was cancer found in nearby lymph nodes?” People are pretty savvy these days, and they know that cancer can spread through the lymphatic system, and that if it is detected in nearby (‘sentinel’) nodes it has the potential to spread elsewhere in the body. The answer in my case: we don’t know, because they weren't sampled during surgery. The reason? My cancer had already spread pretty extensively throughout the pelvis and abdomen. There was no need to assess potential metastasis because actual metastasis was already evident.

On the very important matter of hair loss: the doc agrees with the chemo nurse that I’ve probably lost all (or almost all) the hair I’m going to lose, and probably won’t reach the billiard ball stage. So it’s quite possible I’ll make it through this without needing to resort to hats and scarves. Glad I didn’t invest in a wig! And yes, I’ll try to post a picture soon.

Guest Blogger Caroline: Step by Step

Gosh.  I’ve started and erased this post multiple times over the last two weeks.  Nothing I start writing seems to sum up what I have experienced since last May.  How do you find the words to explain your world suddenly turning upside-down?  I’ll try:

I guess I’ll start by explaining that I never expected cancer to hit so close to home.  Well, that’s not precisely true. Back when I was about seven, I had myself convinced that a wart on my finger was cancer. I was seriously freaked out about that.  But no, I mean real cancer, the “potentially life-limiting” sort of deal that we’ve been thrown into.  That happens to other families, other people.  Not to my mom.

In fact, I refused to believe at first that what the doctors saw on the CT scan was cancer.  When my mom called to tell me that there were “masses” seen on the scan, I knew in my gut that masses = cancer.  In my head, though, I tried to come up with any other explanation: ulcers, calcifications, I don’t know.  Anything besides metastatic cancer.

But it was.  And, without warning, everything that I was taking for granted in my life was thrown into question.

As many of you know, I’ve been living in Boston since graduating from college, doing the whole young-adult-in-Somerville thing.  Job, friends, boyfriend, the whole enchilada.  And in May, I was feeling generally settled and starting to think about where my next steps might take me.  Short term plans included going to grad school.  Long term plans included getting married and having kids.  Nothing felt rushed though.  “I’m only 23,” I thought, “I have time.”

Time doesn’t seem to unfold forever anymore now, though.  Every plan I make brings the question “what about Mom?”  It is very sobering to face the possibility that my mom won’t be there for my wedding, or to hold her grandchildren.  I don’t plan to rush these things, but I’ve always assumed that my mom would be there for those important milestones.  I hope that she will be.

On a day-to-day basis, the hardest thing for me is experiencing everything from afar.  Some days I can almost forget that anything is even wrong.  But most days, although I remember, I feel removed, like I have a bird’s eye view over everything.  I get reports by phone, by text, and by e-mail, but that’s not the same thing as being present, being part of the new routine that the rest of the family developed.

It just doesn't seem to make sense to take extended time off of work right now though, so I have to be satisfied with this for the time being.

Coming up with a conclusion for this post is almost as difficult as it was to get started.  It would be nice to tie everything up neatly.  But that’s not how cancer works. We can count the days until chemo is over, and we can celebrate that milestone, but we still have to take things step by step.

Step by step.

Rhode Island Read

Last month I wrote about my trip to Rhode Island. If you haven’t read that post, especially the part about swimming at the beach, go read it now. We’ll wait.

(While we’re waiting, can I offer anyone an heirloom apple? We have Blue Pearmains and Chestnut Crabs. [Staying on topic here: if we cross those will we get Blue Crabs?] David picked them up on his way back from Hell. Hell, MI, that is. Yesterday he ran in the crazy relay race – Dances With Dirt -- that he loves so much.)

All set? Everyone back with us? Okay here’s why I wanted you to (re)read that. That beach, that very beach, was featured in the New York Times Travel section today! The article is aptly titled My Favorite Place: Little Compton, RI.

"If ever there were a complicated beach, South Shore Beach is it. It has a serious case of split personality. This is a beach with tawdry charm dangling from a bracelet of breath-taking beauty. Half of it is resplendently tacky. The other half, officially Goosewing, is gorgeously unspoiled. Its appeal is infinitely variable, no matter the season."

You can read the rest of the article here. I get to see the real thing next weekend!

"Shake Day" Lives!

When I was in graduate school at the University of Chicago (1988-95), one of our favorite breaks on Wednesdays was to go to the C-Shop for “Shake Day”. Anyone who braved the extremely long lines could get a milkshake for a dollar.

Well, folks, today is Wednesday. My way home from my weekly blood draw took me right past the C-Shop (although I don’t know if it is still called that; it seems to be run by Einstein’s Bagels now). So I thought, why not? And YES! Students were plunking down their dollar bills and getting shakes in return. I joined them.

Things have changed. The shakes are smaller. The ice cream is pretty low grade, the proportion of milk has increased. No longer are shakes made to order; you get a choice of chocolate, vanilla, strawberry, or mint chip, sitting out on the counter. Crushed Oreos and multicolor sprinkles have joined the customary whipped-cream-and-vanilla-wafer adornment. Cherries are not offered. But you can still get a shake for a dollar on Wednesdays. This makes me happy. (I had mint chip.)

I wasn’t actually all that hungry, but I thought I could use the energy. My custom is to walk home from the hospital, about 1.5 miles. I knew it was a stretch today. I'd been ambling very slowly, conserving energy and going for endurance rather than speed. My handy-dandy cell phone app that displays the location of the CTA buses circulating through our neighborhood showed that I’d just missed one bus. I thought I’d give the walk a try.

It was a noble effort. I encouraged myself with thoughts about not being a quitter, about how I know how to get through challenges, about just plunking one foot down after the other. After about five long blocks, though, I sat down to rest. And I realized that discretion is, indeed, the better part of valor. I whipped out my phone again, checked the location of the next bus, and waited for it to arrive. Good move. I arrived home – still a three-block walk from the bus stop – extremely tired but not totally knocked out.

"Things That Suck" for $200, Alex

In this blog I’ve sometimes been a little Pollyanna-ish. Oh, I’ve never echoed her directly and said how glad I was. But I’ve certainly alluded to some of the good things that have come about as a result of my illness.

Today I’m going to be plain (and I apologize if my vernacular offends some of my older readers): this sucks.

Here are some of the things that suck, in no particular order. Be aware that not all of them obtain all the time. Many of them only apply to a few days at the start of each chemo cycle. But when they suck, they really suck.

• Having my life turned upside down without warning
• Needing a rest after reading for 15 minutes
• Feeling fuzzy-headed, literally; as though my head is stuffed with cotton
• Taking handfuls of pills each day
• Intraperitoneal chemotherapy
• Chemotherapy, period
• Not running
• Cutting workouts short because I feel ill
• Maybe never knowing my grandchildren
• Lacking ambition to do simple things
• Only being able to accomplish simple things
• Acid stomach
• Having a tube protruding from my belly
• Weekly blood draws
• Thinning hair (but at least I still have some)
• Not knowing when the rest will fall out
• Uncertainty in general
• All my hard-earned fitness melting away
• Falling blood counts that make me feel shaky
• Hot flashes
• Achy bones in my legs
• Difficulty sleeping
• Needing to rely on David and friends for so much

Guest Blogger Emily: Two Homes are Better than One

As many of you know, I’ve just started my second year at Pitzer College in Claremont, CA- approximately 2,000 miles away from my other home in Chicago.  My first year at Pitzer found a new sort of home I’d always wanted…somewhere with great people similarly quirky to myself, somewhere with good food and education, and, above all, somewhere warm the majority of the year.  Fewer of you may know that towards the end of the year, I tried everything within my power to stay out in California over the summer.  This ended up being a lesson in the classic Stones song - you can’t always get what you want, but if you try sometimes you just might find you get what you need.  Turns out, I got exactly what I needed.
 
I landed in Chicago in mid-May, and within the first hour home, my mom confessed to me that something was wrong, that she hadn’t been feeling well for a while.  Needless to say, this put a large damper on coming home for the summer.  I immediately let the anxiety take over, and started to imagine every possible bad scenario (the current case included).  Being well versed in anxiety-talk, though, I attempted to shove them aside in the usual pile of what we like to call “what-if” thoughts.
 
For the next few weeks, I waited as (im)patiently as the rest of my family for answers.  I preoccupied myself with a few things, primarily a search for a summer job and a search for a new car.  I found both these things very trying, though.  At my age, I still look to my parents for advice and help on things like these- the minor little steps in to adulthood.  Unfortunately, my parents were (justifiably) preoccupied.
 
The day my mom went in to surgery, I took a babysitting job.  My wonderful friend Anna joined me, in case I found myself overwhelmed or upset.  I stayed in contact with my dad all day, but I had a lot of fun with the kids, and I went to the hospital to join my dad when the parents came home.  That may have been the worst day for me in this whole ordeal- we didn’t have much information, and it ended up taking longer than expected.  After we left, I had to pull over on my way home.  I was exhausted- I woke up to a text message from my dad saying he was going back over to the hospital to stay with my mom timed about ten minutes after I got home.  I fell asleep so quickly and deeply that I slept right through the ring.  The next few days, I did more babysitting, joined my mom in the afternoons/evenings, and then crashed when I got home.  I also received two wonderful job offers: the chance to nanny for a family down the street and the chance to work at a daycare, also located down the street.

These jobs wore me out quite a bit over the summer, but I really loved them.  They also gave me something to do.  There was one day (or two, or three…), though, where I got really exhausted and frustrated.  I came home, and I told my mom that for just one night, I needed to go back to our regular roles- I needed a mommy.  For me, this was one of the best nights all summer- my mom made me chicken noodle soup and hugged me, and it felt almost “normal” again.
 
Those of you who know our family know we’ve always been closer than average for a family with teenagers.  I could have done a lot better though.  In the last three weeks that I’ve been back at school, I’ve called my parents more times than I did last year in total.  I think that’s been the greatest gift I’ve gotten out of this: I’ve gotten even closer to my parents than I had been before.  It’s very difficult being so far away, especially when I was so close for the whole summer.  Luckily, I’ve got an amazing support system here in California- my friends are some of the best people I’ve met, I’ve got a wonderful job at the Queer Resource Center here in Claremont with a fantastic boss who acts as therapist for all her staff, and, I think most importantly, I’ve got a really terrific boyfriend here with me who has been there for me every step of the way.  And I’ve got my phone and my e-mail and this blog.
 
Looking back, I’m really glad none of those jobs in LA worked out this summer.  I would have been miserable.  Or I would have quit and come to Chicago anyways.  But the way things worked out, I got to spend more time with my family and come to appreciate them all in ways I hadn’t been able to see before.  What my parents and I have is a gift, and if I got anything out of this experience, it’s learning that.  I joke about having gotten crappy DNA sometimes (the kind that, say, might give me a higher likelihood of getting cancer), but when you come right down to it, I was lucky to be born in to this family.  I’m thankful every day for the time and closeness I get to share with my parents.

Living In The Present

In a comment on this post of mine, Nicole Fall wrote these wise words:

“One of the aspects of growing older that I find pleasantly surprising is that I am living much more in the present. There are, let's face it, fewer options for our futures from the simple aspect of having less of it. 

Everything I used to do as a younger person was analyzed for its productive use of time and its bearing on where I intended to go in the future (speaking career wise) There was little enjoyment of the present.
 Uncertainty is always with us. Anything else is a fantasy.”

Nicole was in elementary school with me – though I don’t know if she remembers that – and in high school with David. Hi Nicole! (waves to Nicole)

Her words reminded me of a favorite song, written by Phil Ochs in the 1960s. It’s easy when first listening to this song, called “When I’m Gone”, to think it’s a sad song – especially if you know that Ochs died by his own hand. But it’s not. It’s a paean to taking advantage of the here and now: to seek out the beauty, to experience what life has to offer, and most especially, to do what you can to make the world a better place.

Here are two versions of the song. The first is Phil Ochs himself. The second is a folk duo called Magpie, accompanied by Kim and Reggie Harris. I like them both, for different reasons.

Simple, Concise, Appropriate. UPDATE!

David and I saw this t-shirt last weekend and really liked it.

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I was reminded this week that the only thing I can predict is that things are unpredictable. This is my "good" week, right? That was true Monday and Tuesday, when I had lots of energy to go for long walks and do things like roast eggplants on the grill and make blueberry jam. Wednesday I crashed. Today I crashed. Not badly; I just have no energy and feel kind of shaky and out of sorts. I think the promised accumulation of chemo effects is starting to affect me.

Speaking of chemo effects: I had very little additional hair loss in cycle 3. So little, in fact, that I finally gave up expecting it all to fall out -- in this cycle, at least -- and went for a haircut! Just to neaten things up a bit. It's shorter now, but it lies really nicely and the thinning is not so noticeable. I don't have a picture yet, but I'll post one when we take it.

Back to Day 1 chemo tomorrow. Perhaps I'll post tomorrow, but don't expect anything from me for a while after that. There might be some posts from guest bloggers!

Update: Well, no wonder I felt worse. I got a peek today (Friday) at Tuesday's labs. My red blood cell count is indeed slightly below the normal range. Red blood cells are the ones that ferry oxygen around the body, so in essence all the rest of the cells in my body are trying to operate in a slightly oxygen-poor environment. On the good side of the ledger, my neutrophil count is actually at the high end of normal. This is presumably due to the neutrophil-boosting injection I give myself once a cycle. Neutrophils are good; they are part of the immune system and help the body fight off infections. Must be why I never got that cold David had!

Weekend Getaway

Good things can come out of bad situations. We have found many good things this summer; one of them is that I made a new friend.

Upon hearing of our hope to get away this weekend, my friend generously urged us to use her family's lake house, on the eastern shore of Lake Michigan. It was wonderful.

We arrived late Friday night, in the dark and so tired we just tumbled into bed, with no clear sense of what lay around us. Saturday morning...all I could do was soak in the peace and the beauty. I sat on the deck, looking up at the green leaves wavering against a deep blue sky, and then out through a gap in the treetops at what promised, when the light fog lifted, to be the waters of the lake but at that moment might have been the tops of clouds in a valley far below. And I was sure of two things: that at that time, in that place, I was utterly happy, and that I understood why green and blue are my favorite colors.

Later, walking with David on the deserted beach, I was again struck by the aching loveliness of this place. Mind you, I had given up on ever finding beauty within a reasonable car ride of Chicago. Here it is. I'll put it up against any of our favorite places in Ireland, Scotland, or New England. It might well come out on top.

The house, too, is enveloping. It is rare to enter an empty house and feel immediately that you belong. But that is the nature of this house. It is built for large groups of people -- of family. It welcomes you into the fold. I understand just by being here, surrounded by the designs and choices her family has made in creating this home, how my new friend developed her warm and embracing spirit.

I wrote earlier about the importance of being able to recharge during these "rest and recovery" weeks. Getting away physically is so helpful. It becomes too easy, in my regular life, to dwell on hypotheticals and uncertainties. A change of scenery, a change of pace, refocuses me. I rediscover each time that life can be good, that I feel lucky to be here on Earth, that it is wonderful to feel joyful in the here and now.

Improbability

I thought I might share a bit about why it feels so freaky to have this diagnosis. I mean, beyond the whole “OMG, I’ve got CANCER!!!!” thing.

Endometrial cancer accounts for 6% of all cancers in women. About 43,500 women are diagnosed each year, or 23.8 per 100,000. So, luckily, a particular woman’s chances of getting diagnosed with it are pretty small.

It’s particularly unusual at my age. More than 70% of endometrial cancers are diagnosed in women older than me. Only 19% are diagnosed in women in my age bracket (45-54). (Although, to be fair, the median age at diagnosis is 61, which is not that far off.)

Further, the large majority of endometrial cancers, 68%, are discovered when they are still localized to the uterus. Only 8% have already metastasized, as mine did.

Doing some rough figuring, we multiply the number of new cases times the incidence of detection at my age times the incidence of metastases, and get:

43,500 X 19% X 8% = 661

That’s it. Fewer than 700 women my age get this diagnosis each year. See why it’s freaky? Basically, my faith in probability has been shattered. Events of very small likelihood do happen, and when they happen to you, you feel very vulnerable to other events of very small likelihood.

Mission Accomplished!

Woo-hoo! We did it! My INR today was 2.6. For those of you just joining in, this means 1) my blood takes 2.6 times as long to clot as yours does (not that it's a competition or anything ... just sayin'), and 2) that we have finally found the right dose of oral Coumadin to protect me from forming potentially fatal blood clots. We'll test the clotting time again on Friday, and if it stays in the therapeutic range, I can stop the Lovenox injections. I say again: Woo-hoo!

Things Are Seldom What They Seem

“How are you?”

It’s an innocuous enough question, a social pleasantry … and yet, a query that stops me in my tracks every time.

How am I?

The easy thing to do, of course, is to toss off the standard “Fine, thanks, how are you?” That doesn’t feel quite honest, though, even though it follows conversational convention. Mostly, I opt for something like “Hanging in there” or “Doing well today, thanks.” Something that honors the sincere, if formulaic, question, and conforms to social norms – I’m pretty sure the checker at the produce store doesn’t really want to hear all about my surgery and chemo – and still rings true to me.

But there remains the deeper question: How am I?

As I’ve mentioned before on this blog, many days I don’t even know how to answer this on a surface level. How am I feeling today? It can change hour to hour. Some ways of feeling are neither familiar nor easily identified. Sometimes I will myself to feel better than I really do, because it fits into plans I’ve made. (This usually comes back to bite me.) Some days I am pleasantly surprised at an unexpected surge of energy or spirit.

Does how I feel = how I am? The discomfort I feel at times, the fatigue, the shakiness, is due to the treatment, not the disease. So, in a sense, I am fine. The treatment is time limited, and when it stops, I will feel better.

I will feel better… but will I be better? Depends on your definition, I guess. I will certainly be more functional. But, until proven otherwise – which effectively means no recurrence after many years -- I will still have cancer. Metastatic endometrial cancer. It’s what my primary care doc gently describes as a “potentially life-limiting disease.” I might feel fine, and yet not be fine. Can one be truly fine when harboring a time bomb?

Perhaps. I can envision coming to peaceful terms with the uncertainty each of us has about our own mortality, and deciding I truly am fine, regardless of what a doctor or an actuary might say. But I’m not there yet.

How am I? So many dimensions to consider: physical, emotional, philosophical, existential. So many minefields. So much uncertainty.

Fall Is In The Air

The weather here in Chicago has done an abrupt turnaround. Two days ago it was in the 90s and muggy. Today … it is very breezy and cool, and despite bundling up in a fleece jacket and fuzzy slippers, I had to move inside with my breakfast and the morning paper. Fall is apparently here.

With fall, of course, comes the opening of school. For my school, that’s tomorrow. This is the first September in 14 years that I won’t be stepping into my fourth-grade science classroom and introducing eager young minds to the mysteries of science and the methods of scientific thought. My treatments continue into November, and I am on medical leave for the fall quarter.

Many people have wondered, often with some concern, how I am feeling about this change in pattern. Me too. I am not always in touch with or honest about my emotions. In truth, right now I feel kind of blank about it. I think people expect me to feel a big gap – left out, purposeless, without context – but honestly, school feels like it’s in some alternate universe right now. I miss my friends there, and I really like knowing what is going on, but since I haven’t the energy or concentration to teach I don’t seem to feel it as a loss. I cannot fathom mastering the names of 115 new students, much less structuring new lessons each day and teaching them to multiple classes.

I’m setting my sights on more modest accomplishments. I have 11 days of “rest and recovery” before chemo starts up again. With the advent of cool weather, I hope to whip the garden into some semblance of shape –­ many plants desperately need deadheading – and maybe, possibly, conceivably, give the deck the washing it so badly needs. I will probably make more bread-and-butter pickles, and maybe dry some tomatoes and peaches in the dehydrator. It is really good to have these small-scale projects. More properly, it feels good to have the ambition to contemplate them. More on that in a future post, perhaps.

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David and I would like your ideas for a weekend getaway. Ideally, within a 2-hour drive from Chicago. Or a 1.5-hour flight. Goal is someplace that is psychologically distant from current life, with engaging but not too demanding surroundings and activities. Specific recommendations (hotels/restaurants/B&Bs/activities) gratefully accepted. Leave ideas in the comments section (click on "No. of comments", below) or email us. Thanks!

On Bravery

“You’re so brave.” “ I’m amazed at your courage.”

I’ve been hearing sentiments like these ever since I got diagnosed in May. They are certainly meant as compliments, and I accept them in that light. But they have puzzled me as well, because my immediate inner response has always been, “But all I did was get sick!”

Bravery to me connotes some sense of making a choice, especially a choice that is unpleasant or has some personal cost. Brave people run into burning houses to save children. They are the ones who help others off a damaged aircraft. Brave people face up to bullies and say, no, this is wrong. They could choose to walk away with their lives intact, but they don’t. They choose to help others, to save lives, to right a wrong.

So how does treating an illness fit into this perspective? It doesn’t, really. There are choices – don’t have surgery, don’t have chemo – but their costs are, in the end, greater than not taking action. Making the choice to accept treatment just feels pragmatic to me, not brave. When you learn you have cancerous tumors throughout your abdomen, trust me, all you want is to Get. Them. Out. Now.

Surgery might seem daunting, so I can see how it might seem brave to willingly undergo a major operation. As it happens, I have more experience as an observer of surgery than most people. My high school Senior Project involved shadowing a medical student 24/7 in her surgery rotation. This would surely not be allowed these days, but I pretty much had free roam of the operating rooms and saw a variety of surgeries. I went on rounds and became familiar with the processes and procedures of recovery. None of this helped me know what recovery would feel like, but it demystified everything.

Perhaps, by being brave, people mean that I faced up to my cancer. I haven’t shrunk from using the word or explaining my situation. I was forthright with my fourth-grade students about needing surgery (although, in the end-of-year circumstances, it was agreed that I should not disclose the nature of my illness to them). I’m choosing to share the experience through this blog. Maybe this is bravery. I think perhaps it’s bravado. Take a peek into my mind in the wee, dark hours of the morning and you will see plenty of fear and anxiety.

And yet … As I go through chemo, I begin to understand what people mean. Although I’ve made the distanced, pragmatic choice to treat my cancer, two of every three Fridays I have to make the genuine choice: do I show up? Understand that at this point, with three cycles under my belt, when I contemplate the next chemo session I feel physically ill. The times I’ve thrown up have been in anticipation of or during chemo, not as a result of it. When I get close to the Infusion Center, every fiber of my being tells me, No! Don’t go there! It takes an effort of will to get out the door for each session (as well as considerable prodding from David!). So perhaps this mind-over-gut choice really is bravery.

Practice, Practice, Practice?

Actual text exchange between Caroline and Leslie, reproduced with the aid of a fake iPhone text generator...