The Look of Love

A word cloud drawn from all of your messages.

Thank you all for your amazing messages of love.  We've heard from our families, childhood friends, college friends, grad school friends, work friends, ballet friends, running friends, travel friends, parenting friends, our kids' friends, and more.  Some of you we've known for ages and some we've known only briefly.  Leslie has trouble focusing her mind to read, so we are reading your messages to her, as her attention and emotions permit.

Two things move me, in particular.  One is the clarity and specificity of your memories, even when recalling moments from decades ago; clearly, time spent with Leslie is recorded in indelible ink, or perhaps vibrant oils.  The other is how many common themes emerge in your recollections; the one that resonates most with me is Leslie's ability to speak truth to power (including telling many of us - myself included - things we don't always want to hear, but need to).

My sister Kathy, after spending a few days here visiting, has taken up a new mantra of "say it now."  Don't wait until someone is sick before telling them why you value them or what they have meant to you.  I hope others of you will adopt that, as well, just as you've done so eloquently and intimately for Leslie.

A Spring Haiku

Deluged – a March flood,

As friends unleash a torrent.

Tears…laughs…pure Leslie.

Gardening takes too much energy, but Leslie can still supervise.

Jess, Leslie's trainer, leads an expedition on a lovely day.

Here comes the choo choo...

Bungee Jumping

The fall was fast, but the snapback was equally dramatic.

On Thursday afternoon, while waiting for radiation treatment in the company of a friend, Leslie had sudden trouble breathing.  She'd had a great morning, puttering around the house doing things for herself, taking a short nap, eating well.  We'd talked by phone a few times and she was clear and focused.

Now, though, I was getting a phone call from our friend saying that Leslie was in distress, but doctors were on the scene.  I was already on my way home from work, but soon had another call saying Leslie, her mom and Lisa were in the ER (we're elite members of their frequent stay program, at this point).

I found Leslie in a bay, with an oxygen mask cranked to full, but still laboring to breathe and struggling to voice coherent thoughts.  Through the afternoon and into the evening, she had blood work, a chest x-ray, and then a series of visits from the GynOnc and Palliative/Pain teams.  With Ativan, they were able to get Leslie drowsy, though still gasping and tense; her fists were clenched so tight she kept disconnecting the fingertip oxygen monitor.

In the early evening, the lead doctors from both teams came to us together, to say that Leslie's body was working so hard to stay oxygenated, even with help, that they feared it couldn't sustain the effort.  The x-ray showed no signs of metastases or pneumonia, so they could only posit either that the cancer load in her belly was forcing the body to overwork, or that her form of cancer throws off tiny clots that even Coumadin couldn't overcome.

The doctors put Leslie on a Hannibal Lecter-style high-flow oxygen mask that they said could only be used for short terms, and that was a measure short only of intubation, which we'd already rejected. 

This was the moment that I'd anticipated with dread - the "call the girls home" moment.  Through tears, I talked with Caroline and Emily, helped move up flights (they were due home this weekend in any case, Caroline for a long weekend and Emily for spring break), and called Leslie's and my siblings.  Leslie's mother - here since Tuesday - cancelled her planned return the next day.

We sat by the bed and watched anxiously for signs of ragged breathing.  We whispered things to Leslie that we didn't want left unsaid.

Late that evening, they moved Leslie into a room, with a cot for me.  By the time intake was finished, and an added dose of Ativan kicked in for Leslie, it was almost 2 am, and we both drifted off for a brief sleep.

By 6 the next morning, the bungee cord had reached its nadir and snapped back.  Leslie woke up clear-headed and breathing more normally.  They took off the mask to give her meds, and her oxygen level remained where it ought - between 95 and 100.  The mask stayed off all morning - she didn't even need a nasal cannula - and her levels dipped into the warning zone only when Leslie gave hugs to arriving friends and family.  She sat up in bed, ate breakfast and entertained friends, family and staff with full engagement and humor.  It was as though the previous night was a bad dream.

That said, we are clear-eyed and have no false hopes.  As the GynOnc doctor said on rounds yesterday morning, the situation is still pretty dire.  So, yesterday afternoon, we came home officially transitioned to hospice care.

Leslie now holds court in a hospital bed in the living room. Oxygen tubes snake out of our bedroom and down the stairs.  There are new meds to support the goal of managing pain and anxiety.  Today, we'll start regular home nurse visits, and emergencies will be managed first through the hospice agency - no more ER trips.

In some ways, this extreme scare was helpful - it's forced us to ask what needs to be asked and say what wants to be said.  For some time, we've known the trajectory, but the shallow slope of the line to now masked urgency.

Let me encourage you, dear readers, to accept the urgency, as well.  It's easy to say nice things about someone who's no longer there to hear them; why is it so much more difficult to say them directly?  This week, we received an e-mail from a family member with whom Leslie built a special and helpful relationship; it meant so much to Leslie - and to me, as well - to hear how important their friendship has been.

If there's something you'd like to say to (or about) Leslie, do it now.  Phone calls are difficult, and you need not post publicly here; send Leslie an e-mail at leh6@midway.uchicago.edu and/or send it to me at dkleeman@atgonline.org.

Umbra's Security Service: I got this.

One Step Forward, Two Steps Aaaack!

Spring may be coming to Chicago, but here we're more concerned about fall.  A tumble last Saturday night - likely a combination of neuropathy in the feet and imbalance from pain meds - left Leslie with a broken bone in her foot.  She's getting around in a boot and using a walker, and moving pretty well.

To start at the beginning, on Saturday night, after a good day of visits from friends, Leslie went upstairs while I prepared dinner.  Suddenly, I heard a thump and a cry.  Leslie had fallen in the bedroom and hurt her foot.  It seemed unwise to try to get her up and onto the bed, so I covered her with a blanket and called 911.  The EMTs showed up soon after, and we had a debate over whether to take her to the University of Chicago Hospitals (ostensibly on "bypass") or to Mercy.  Given that the foot injury was going to have to be merged into the whole suite of medical professionals and treatments in Leslie's life right now, we convinced them to try the U of C, and in fact she was triaged quickly and ushered to x-ray.

The initial images showed no break, so Leslie was given a plastic brace, wrap and walker; by that time, though, she'd gotten anxious and a little delirious, so they kept us until about 3 am for observation, then sent us home.

Monday, we had a call from the ER, saying the weekday radiologists often review images from the weekend, and in our case, thought they did see a break.  Leslie's primary care physician was able to get us in quickly for a CT scan of the foot, as well as a follow-up appointment on Thursday with a good orthopod.  Given that Leslie is in palliative care, it didn't seem to make sense to operate on the foot, hence the boot (replacing the brace).

It's been an up and down week, overall.  Leslie's getting daily, highly-focused radiation on her primary tumor, and it seems to be having its intended palliative effect.  She is able to sit upright for longer periods (pre-radiation, 30 seconds was about the limit; now, she can sit through dinner).

Still, sleepiness is a primary side-effect of radiation treatment, and coupled with the daily trip to the medical center and home, she's really tired.  Add in CT scans, foot doctor appointments, blood draws and more, and the result has been a couple of breaks with reality.

The scariest was on Tuesday, coming home.  It was clear in the car that Leslie wasn't thinking straight, but when she tried to get out of the car (into my arms, not on her own) her legs buckled and she fell (gently) to the sidewalk.  She immediately became agitated, making it more or less impossible for me to lift her.  Fortunately, a friend happened to be walking down our block and helped me lift Leslie and get her inside.  By that time, she was shock-y and shaking; even a dose of calming medication took an hour to have effect, and for the rest of the evening, she veered between sleep and incoherent chatter.  From 4 on Tuesday afternoon to 11 the next morning, Leslie slept almost straight through, waking only for bathroom trips and for a small breakfast.

After another, similar lapse today, her palliative care doctor concluded that low oxygen level was the likely culprit in her downward spirals, so we now have a rather noisy oxygen machine whirring away in our bedroom, and several tanks of various sizes (given that they're to keep her mentally connected, would they be "tanks for the memories"?).

We're also switching Leslie's pain meds from morphine to dilaudid, which the doctor thinks will lift the mental fog somewhat.

Nothing has been so hard on Leslie as the mental fuzziness.  Those who know how articulate, quick-witted, thoughtful, detail-oriented and analytical she has always been can well imaging that Leslie is frustrated, sad and angry at not being able to hold ideas, process questions or decisions, or recall words.

For all her friends who have been sending cards and e-mail, please keep doing so.  She absolutely loves reading your messages, including newsy updates on what's going on in your lives.  The exhaustion, however, makes it hard for her to focus on replies, so please don't feel offended if you don't hear back.  She -- and I -- are feeling all the prayers, wishes, thoughts, karma rockets, light...whatever you choose to send, and we hope you can feel the love that is returned to you manifold, even if we can't always put it in writing right away.

Woozy, Loopy and other dwarfs...

One of the reasons I don't like the metaphor of "fighting" cancer is that even the Nevada State Boxing Commission wouldn't sanction such an unbalanced bout.  As strong as Leslie is, it's become apparent that she is overmatched by a particularly vicious opponent.  The tumor that recurred shortly after chemo ended has at least doubled in size since early January, and the most recent scan showed new metastases on the liver.

We've entered the "palliative care" stage, where the focus is on keeping Leslie comfortable and pain-free, and maintaining the highest possible quality of life, while acknowledging that the disease itself can't be overcome.  At the beginning of this week, she began a 2-3 week course of highly-targeted daily radiation - very short bursts aimed directly at the tumor in her colon - in an effort to shrink it enough to relieve her pain and restore some normality to her bowel and urinary function.

In the past week, we've enjoyed visits from Leslie's mother, her brother and sister-in-law, our friend Katie, Caroline and Emily.  We've reached a phase where there are no "guests" - anyone who visits is needed to jump in and assist, and all visitors have done this above and beyond the call. 

The first days of these visits, however, were a maelstrom, due to a failure in pain control medication that landed Leslie in the ER (for 31 hours!) and hospital.  I was at the office last Thursday, when I got a call from the Physician's Assistant in the GynOnc department; she'd just talked with Leslie, who was confused and panicky.  I started home immediately, fielding calls all the way from the PA with updates; they couldn't tell if Leslie was under-medicated, over-medicated or having some other reaction, and recommended bringing her to the ER.  Part of the reason was that in her delirium, Leslie was having trouble remembering which medications she'd taken when.

Wheeling Leslie into the ER while she was shaking and in clear agony got us quickly triaged and put into a bay (with real walls and door, not just curtains).  They gave her a shot of morphine to start, and soon had her hooked up to a PCA (pain control pump) which enabled her to control her meds by clicking a button every 12 minutes.

ET phone home...

 We ended up staying right there for 31 hours before they could find a room (and even then we had a bed race down the hall to beat another patient to the one remaining private room).  The nurses in the ER were godawful - meds went unadministered, no food or drink was offered, catheter bags went unemptied, requests for attention went unanswered.  I joked on Facebook that if we'd been in the ER for another 96 hours, I'd have sawed my arm off to escape.  It wasn't just our impression - the nurse who delivered the home pain control machine said she's "never before been treated with such disrespect" as by the ER nurses.

During her time in the ER, Leslie was by turns in significant pain, knocked out, delirious and OK.  They got her on a pain pump very quickly, but probably had the amount set too low at first, so she'd get only brief and partial relief.  When they upped the amount, she knocked out completely and began mumbling nonsense.  Three hours later, she woke up in great pain, shaking and incoherent.  Again, the doctors debated whether she was under-medicated, over-medicated, allergic to something, or just hadn't yet settled into a pain-relief pattern.  They gave her an anti-anxiety drug, a sleeping pill, and finally got us into a room. 

Let me add -- imagine how scary this all was for Leslie's mother, who sat by the bed with me for all but the overnight hours.  All parents reading this know there's no more helpless, stomach-churning feeling than seeing your child in pain.

All looked much better the next day, once a more stable regimen of pain med dosages was reached.  We were released Saturday evening, after they observed her for a few hours with the home-use pain pump (which comes in a lovely little shoulder bag).  At home, with the benefit of home nurse visits for fine tuning, Leslie has successfully gotten her pain is in check and not so much that she is woozy, loopy or any of the other dwarfs.  Sometimes, she needs the added "bolus" that's allowed every 10 minutes, but often the steady dose is enough.  She's had no confusion or scary shaking symptoms.

Between the pain control and a doughnut pillow that Katie found, Leslie was even able to sit up for dinner - something she hasn't been able to do for a while, as the pressure of sitting on the tumor is too painful. 

Whether "laughter is the best medicine" or "it only hurts when I laugh," the events of the past week haven't stopped our dark humor.  The first home nurse to come check on the pain pump was treated to a comedy routine by Caroline, Katie, me...and even Leslie and the nurse chimed in.

Some find our ability to laugh a bit odd -- one person said she guessed it was like ethnic jokes, in that you're allowed to tell them on yourself (leading to "how many members of the cancer-American community does it take to screw in a lightbulb"?  "No need, just wait 'til after radiation and read by the glow.").  Even some of what Leslie said while delirious got us laughing - "we're not laughing with you; we're laughing at you" - such as the extended discussion of the thermos at the bottom of the slope. 

Back to reality - the radiation doc is fairly confident that this treatment will relieve some pain, which causes us to feel some optimism. That said, Leslie's illness has at every stage defied the odds and her pain has outstripped the medication given.  The pain docs assure us that we have a long way to go before maxing out any pain relief medications.  At the same time, of course, we want to keep clarity and interactivity at a maximum. 

For now, I'm writing a letter of complaint to the Nevada State Boxing Commission.

Home Again, Home Again

Once again, there's been a gap in our blog posting.  When last we left our intrepid hero, she was hospitalized, trying to find the root of constipation, urinary retention and related pain. She was adding to her team, supplementing the GynOnc docs with a pain management specialist and a cancer-specific psychiatrist.


I'm pleased to report that Leslie is home again, even if all the issues are far from resolved.  She's still juggling pain meds, relaxation tapes, and occasional artificial inducements to eliminate.  She's still subject to out-of-the-blue flashes of intense pain. That's probably what is most frustrating right now - her symptoms aren't really changing, but the triggers are, and in unpredictable ways.


At least at home, she can take warm baths, move from bed to couch to recliner, eat what she fancies when she wants it, and engage in kitteh therapy,


Dear readers, it's not hard to read between the lines of this post that our journey is moving in the wrong direction.  The problems that put Leslie in the hospital also resulted in her losing eligibility for the clinical trial.  On Tuesday we will meet with a radiation specialist to see if very targeted treatment might provide pain relief. Our various docs differ on whether this is wise or grasping.  Will the treatment actually relieve her discomfort?  Will the relief be enough to outweigh possible side effects?


Our immediate disappointment has been that the inability to get pain and constipation under consistent control meant Leslie could not accompany me to California for my Television Academy Board retreat this weekend.  We'd been looking forward to giving her a spa and beach weekend (though current forecasts show temps only in the 60s) and especially a Pitzer visit with Emily.  Leslie insisted that I go ahead with the trip, both for Academy purposes and to give Em at least one-parent face time.


Our next happy target is next week, when we'll have a houseful, with overlapping visits from Leslie's mother, Caroline, Leslie's brother and his wife, and the kids' "second Mom," Katie.  Fingers crossed, by then we'll have everything under control so she can enjoy the hubbub!  

Where Have We Been?

This time it really has been an awfully long time since I posted. Much has happened. I'm going to skip over most of it to bring you up to date on the important stuff.

I alluded last time to the pain, discomfort, and functional difficulties I was having in my nether regions. It got worse. Way worse. I did not have any bowel movements for several days. I was not able to urinate even when my bladder was extremely full. On top of the severe discomfort this created, I had constant pain in the region of my coccyx. I began taking long, hot baths, both for the heat and the buoyancy. Over the course of two weeks, I progressed from extra-strength Tylenol to Tylenol + Codeine to Percocet. Then I became a clock-watcher: the minute my four hours had elapsed, I popped more Percocet. Then I became an abuser: I needed (and took) more Percocet sooner than I was supposed to.

My emails to my doctors elicited new stool softeners and other medications that might -- but didn't -- help. On Saturday (Jan. 28) things finally got intolerable and my docs admitted me to the hospital. Never in my life was I so grateful to have a urinary catheter inserted! I was started on heavier-duty pain medications, including a patient-controlled pump with IV drugs. A regimen of enemas replaced the laxatives. The immediate goal was to make me comfortable and manage pain.

I should say that one reason I didn't write during this period or the following days is that it took a great deal of energy and concentration just to get through each day.

The palliative measures helped a great deal. By Sunday I was relatively comfortable, although still severely constipated. (Folks, I really am trying to give you an accurate picture of my situation and distress without grossing you out totally with the details.) Progress was gradual.

Also on Sunday, I had a CT scan to see what was going on. You may recall that I had one not long ago (mid-December) that disclosed a small tumor growing on the outside of the colon. Throughout the month, as I reported each new symptom and my growing distress, my doctor consistently conveyed her assurance that this tumor, while a cause for concern, was not big enough or placed in such a location as to cause the kind of symptoms I was having. It turned out that the tumor had grown some more, although it wasn't entirely clear if the growth was more tumor or was due to inflammation from an infectious process. The reigning theory was that the infected growth, or abscess, was putting pressure on nerves that influenced bladder and bowel function, as well as pain.

This was all explained to us Monday morning, after the radiologist had a chance to give the scan a thorough reading. The decision was made to drain the abscess on Tuesday, using a CT-guided needle. Monday was a day of waiting around, but also the day that my bowels began to function again. This was exceedingly encouraging; few things are more depressing than going through an enema with minimal result.

Tuesday morning dawned with promise. Which quickly wilted, when we learned that even though my Coumadin had been reduced and then discontinued over the preceding days, my blood was still clotting at therapeutic levels, more than twice as long as normal: good if you want to avoid blood clots and strokes in normal circumstances, bad if you are planning a procedure that could induce bleeding. This, coupled with a bowel that still contained substantial amounts of feces, prompted the recommendation that we postpone the procedure until Wednesday. Although disappointed and frustrated, we carried on with the enemas and added a dose of magnesium citrate laxative, and were cheered by the appearance of substantial results.

Quality of life, as you might imagine, rather sucked. I had substantial pain near the coccyx, which was exacerbated by sitting or lying on that area. At home I had coped with this by sitting in warm baths, but with the urinary catheter inserted and my chemo port accessed to administer IV drugs and fluids, this solution was no longer possible. I resorted to lying on my side most of the time, and taking walks. While the walks were energizing and provided some comfort, having to roll along with a mobile IV stand and catheter bag was cumbersome.

Tuesday we had a bit of excitement when the catheter induced very painful spasms. (Later traced to one too many turns in the tube, a consequence of moving the bag from bed to IV stand and back again so many times; the tube was trying to unkink itself and in the process was poking me.) They decided to remove the catheter -- instant relief! -- and promised that if I urinated on my own in the next six hours, it could stay out. No such luck; the catheter went back in later that evening, again providing much needed relief. (Talk about Catch-22!)

By this morning my blood clotting time was appropriately short and my bowels sufficiently emptied that the decision was made to go ahead with the drainage procedure. In typical hospital fashion, no one could tell us when it was going to happen until the transport guy arrived. And then we went down to the CT suite, only to wait another hour and a half to get started. (I had a lovely nap during that time, and David got some work done, so the time was not wasted.) And that's pretty much where our story ends. Also in typical hospital fashion, there's a hierarchy to who can say what, and the docs who are sufficiently high in the hierarchy to discuss the outcome have been busy with other stuff this afternoon. Hopefully we will still get a visit, but as we are closing in on 7:30 pm, the chances are getting slimmer with each passing minute.

Oh: the most "amusing" moment today? When the nurse tried to give me my enema in the vagina. We were immensely heartened to see how seriously the hospital took our complaint. A nursing supervisor stopped by, asked for a full and detailed account, was appropriately horrified by that and other details, apologized profusely on behalf of the hospital, and promised complete follow up.