Saturday, June 2, 2012

Sally Chapman July 28, 1946 - June 2, 2012

In Sallys second blog post (Who to Tell and When, September 22, 2011), our brilliant sister laid out the discernment process that led to this blog. A big step, she called it, for an otherwise pretty guarded person. Her reasoning was characteristically clear, fundamentally generous.
The blog would be about choicehers and ours. She would use it to clarify her thinking. She would open it to all. She wished not to foist her illness on others, not to be a whiner. But she wanted to watch, to listen, to think, to learn. That was how she would thread her way through a terrifying thicket of questions. She would remain the scientist. She would find her own answers.
In doing so, of course, she gave us each the gift of insight into our own questions, whether pressing upon us now, or as yet unformed. It has been said that communities emerge when people start asking each other, What are you going through? Our shared concern for Sally and what she was going through brought us into a common awareness of how profoundly her suffering was affecting all of us all who knew and admired her, all who had been touched by her, learned from her, laughed with her.
Many of you told Sally how much you appreciated her decision to go public, how grateful you were for the privilege of seeing the alien world of grave illness through the lens of her keen observation, her intelligence, her self-containment. Many commented on how much they admired her honesty and courage. And she would say in private, genuinely puzzled, What else would I do? Go to pieces? Fall apart? What purpose would that serve?
In the final days of this awful cancer Journey we three siblings Bill, Diana and Muff -- joined Helene, Sallys dear friend and constant companion, in a bedside vigil, drawing from Sallys spirit and her extraordinary example of what it truly means to keep calm and carry on.
It was then that we decided we owed what she jokingly called her public the courtesy of a closing chapter to this ten-month narrative. Later we can gather at Pocono this summer and at Barnard in the fall to share our Sally stories and celebrate her life. This is simply the coda to the cancer Journey blog, picking up from May 17 when she left MSKCC for the last time.
First, a new metaphor. For a while Sally wrote of bumps in the road. Later they became a roller coaster ride. But as we look back now, the image that comes to mind is an unpaved road on which we used to test our mettle as kids at PLP. It was gravel and dirt, badly eroded, rutted with holes and loose rocks and a raised crown that threw you off to the sides. It led plumb down a steep incline into the Tobyhanna River flowing out of Pocono Lake.
This mess of a road was the vestige of the run-up to a bridge that had crossed the river before a hurricane took out the old dam in the 1950s. Beside it, and traversing it, was another dirt road that offered a gentler descent. That one we kids called Safety First. The steep one was Safety Last and we dared each other to take off down it on our bikes in the spring and fall, on sleds and skis in winter. 
Sally was always the smart one among the four of us. She knew better than to mess with Safety Last. Thats what makes it so ironic that from the day she drove back from the Preserve -- July 18, 2011 -- for the first of the series of medical encounters chronicled in this blog, she was barreling down Safety Last toward a dark and raging river.
In the early sequence of consultations -- with the internist, the surgeon, the oncologists -- the news was bad, then worse, then worse still, until it was as close to hopeless as doctors allow themselves to reveal. Bill listened. Diana took notes. Sally took it in. All of it. She made her own choices about how to balance the desire to know against the desire to hope. The erosion of hope was one of the most painful parts of this ride.
And the physical pain unbearable, intractable pain excruciating to all who watched, including the phalanx of professionals in the pain and palliative care service who were doing their all to quell it. Here again, as so often in Sallys complicated case, the house of medicine was divided. During the penultimate hospitalization the purveyors of drugs (better living through chemistry?) were pulling out all their stops and wanted the interventionists to try a celiac plexus pain block (we did look it up). Ultimately they declared it too risky, dashing another hope.
But on Wednesday, May 17, as you read in the latest post, the interventionists finally undertook the pain block late in the afternoon. By the next morning it was clear that the procedure had surpassed everyones expectations and would liberate Sally from the hospital at last, eager, as she wrote, to get moving and build up some strength.
Even that modest ambition quickly revealed itself another unattainable hope. Just managing the schedule of pills and the transition to in-home hospice care consumed all the energy she could summon. But the partial pain relief did, at least, clear a small space for Sally to accomplish a few goals.
Earlier in the month, we three had begun to establish an endowed fund at Barnard in Sallys honor, following her lead in designing the program that would be most meaningful to her. The Sally Chapman Fund will enable the Chair of Chemistry to compensate faculty who, on their own time, are engaging students in laboratory research, work that science faculty are expected to do and can be paid to do if they can secure increasingly scarce government grants that cover summer salary. Sally called this work an unfunded mandate and was pleased to think that her fund would take care of a need especially for junior faculty trying to juggle multiple demands -- that had troubled her throughout her career in the department she led and loved.
During the brief window after the pain block, Sally hosted a small celebration on Moms 93rd birthday, May 24th (Bill drove Mom up and back from Foulkeways for the day; Diana and Chris produced the party). Special friends, some local, others from far away, stopped by her apartment for short visits every day. She and Diana worked with a lawyer to nail down a few details that would simplify the settling of her financial affairs, and she walked Bill through her methodical bookkeeping system. Next, she made the longed-for visit back to the Lake.
The drive up, in Chriss car, was easy and beautiful, taking in all the milestones Sally has passed countless times in a Hertz car. She loved seeing the lush greenery in the Delaware Water Gap. In the trunk was a wheelchair delivered the night before, on order from Vanessa, our spectacular coordinator of care with the VNSNY hospice program. Sally, Chris and Diana thought the chair was superfluous, but Vanessa urged them strongly to take it, presciently as it turned out. Vanessa anticipated and prepared us for every challenge we would face.
Sally was comforted to be back at her beloved Chapman Camp by early Friday afternoon. Four of her dearest friends, the Crawfords and the Prestons, came by with the funny repartee she so loved. She was in and out of the action, which mostly looped around her as conversations had been doing for a week or so. She followed it with her eyes closed and an occasional smile, otherwise too tired to contribute.
On Saturday morning Giny and Fran drove her to a meeting of the library committee, which she had co-chaired. That she made it at all seems miraculous in retrospect even though she was able to stay only briefly. Back at the camp, friends called and came by that afternoon and made appointments for the next day. She was processing the disappointment that even this limited engagement was more taxing than she was now able to handle.
That evening Chris and Diana spoke by phone with their oncologist daughter, Allison, about the trajectory they were observing. Allison urged a return to the city first thing Sunday to be closer to VNS hospice care. Diana checked with Sally that evening. She wanted to stay till Tuesday as planned.
But on Sunday morning, all agreed that her condition was changing fast. When Diana said gently that she didn't want to scare her but felt they should go back, Sally replied simply, "I'm scared too." They were back in NY by 2:00 on Sunday afternoon. Helene joined them right away.
Activating the care network was daunting in the middle of a holiday weekend but Helene, Diana and Chris were able (barely) to cope through the afternoon and to line up 24-hour private help starting later that night. Sally seemed comfortable and calm but was no longer lucid. She became increasingly delirious. By mid-afternoon she could no longer carry on a conversation of any length, or move around on her own. The speed at which she was losing the ability to function was frightening.
The worst two hours involved a four-person struggle (Sally still in charge) to get her safely into bed. She retained her equanimity in spite of all the bumbling around her, but did show a touch of irritation when Diana stepped on her hand while trying to protect her head from a sharp-edged glass table. "Would you please stop hovering," she said in her best take-charge Sally tone.
By the end of that long day she was no longer the Sally we all knew -- vital and vibrant and filled with curious enthusiasm for everything around her. She was still the gracious, gutsy, tenacious, and sometimes hilariously outspoken force that she had always been. That was plenty to treasure for as long as she could hold on. The experts were saying it wouldnt be long -- "days, not weeks" they said. As best we could tell she was not suffering.
She was mumbling about various worries and did seem to respond to reassurances that school was out, the papers were graded, the students had gone off on vacation, and the library at PLP was ready for the summer. She nodded when she heard that.
At one point, she insisted that the aide help her into the wheel chair and the living room. She opened her eyes and announced that she had a lecture to give, pointing to an audience that only she could see. She looked radiant. Diana asked if it would be a chemistry lecture. "Of course not," she replied as though she had heard something ridiculous. "Chemists don't give five-minute lectures."
Later that night she told Diana she wanted to go home. Diana said, "You are home." Sally said, "No. Home home. I want to go to bed. I want to go to sleep." Helene, Chris and Diana were taking solace in their sense that Sally was and felt comfortable and safe, as she had hoped the VNS hospice program would assure when she selected it. Getting to PLP was the last milestone she had set for herself. She had made it. Now being at home was a relief: no more tubes, no more needles, no more interventions, no more roommates (no matter how amusing), no more crushed hopes.
On Tuesday, May 29 Diana asked Sally if she wanted Muff and Bill to come. She said yes, tears rolling down her cheeks. They were here the next day and it was clear to us all that Sally was aware of their presence. She was spending more of her time in a far away place. But being together one more time as the four Chapman children reminded us how much we have treasured that identity and how acutely we will feel the hole in the line up -- in dozens of family photos -- between Diana and Muff.
Our sister smart, strong and fiercely independent -- was tested beyond endurance over the past ten months, beyond comprehension even. Every time she flew over the handlebars for another face plant on Safety Last, she picked herself up again and rode on. She never stopped being Sally, the teacher who expected much of her students but more of herself, the scholar who knew more than anyone anyone knew, the self-reliant feminist who was unfailingly thankful for every kindness extended to her, no matter how small.
She didnt want to make a fuss, or to inflict one on others. She lived the PLP credo, "simplicity, sincerity, service." She tried to limit as best she could the demands she made on us. "Not now, she would say when we offered to come back to NY to help with a new crisis. I'll need you later. We came anyway. Later came. We returned. She did need us. And we will be forever thankful for the times we were available -- and she allowed us -- to pick her up and dust her off after another crash.
Sally would have wanted us to thank so many people who were there for her in so many ways. You know who you are (as she wrote here from time to time). Please know how grateful we three are to you (even if we dont know who you are). Thank you for caring for our special sister when she needed you, for seeing her as the fabulous human being she was, for loving her as we do.
Helene, with whom weve been hanging out of late, has impressed us as perhaps the most erudite, loyal, and caring person weve ever met. No wonder Sally cherished her company. One day she picked up a book Diana was reading and spotted a quotation that was missing its crucial last line. Well end this long blog post with the quotation that Helene can quote by heart. It closes Thornton Wilders The Bridge of San Luis Rey, the fictional story of a bridge collapse that consigned five innocent people to death.
Soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.
If this were Sallys post she would now go back through it and eliminate at least half of the words. We are too lazy. Instead we will conclude by saying that she would have wanted us to remind you of her New Years Eve posting. "Do what you can to enjoy the moment." She did that under the most adverse of circumstances. She showed us how. The pretty guarded person let down her guard during this ordeal. She took in the love all of it. So please take consolation in the fact that Sally knew that you loved her. Please know that she loved you back.

Thursday, May 17, 2012

Good bye MSKCC, hello VNS hospice

Going home this morning. Yesterday was a very busy day negotiating home care. I sm choosing home-based hospice care. Visiting Nurse Service appears to be the best for me because it's quite flexible. I can be with VNS hospice and even get to PLP. I go home by ambulance today. Physically I don't need it, but it is a part of the hospital-to-hospice process. Diana and Helene are still very much in the picture, but the idea is that they are here helping me as friends and family, not as nurses. The nerve block procedure seems to have been an amazing success. Pain greatly reduced  so I need fewer narcotics. Everyone is pleased. I am eager to get moving and build up some strength. It was fun to enjoy the response to Barnard's graduation from my hospital room. The picture on page 1 of the New York Times on Tuesday with Britney's huge smile is to be remembered.

Saturday, May 12, 2012

Plan B On Monday

Increased pain sent me to the hospital in the middle of the night on Wednesday. The process of adjusting the meds always takes longer than anticipated. The best advice at this point appears to be a celiac plexus block (look it up). This could be done on Monday or Tuesday and could provide a couple of months of a non-narcotic contribution to pain relief.   Participating in Monday's ceremony is simply not possible without more effective control of the pain. So Barack will have to make do without me. A substitute had already been worked into the preliminary plans. Happy Graduation, Seniors -- 2012. We'll be watching you.

Tuesday, May 1, 2012

The next stage

Hello to my blog followers.  I apologize that my last post was brief and pretty harsh, and that it has been a while since I posted.  As you may have guessed, it has been a tough time.

I had scans last week and saw Motzer today.  The news is again not good.  While the tumors in some areas (vena cava, retroperitoneal) have not expanded, those in the pelvic area have grown. All along we have known that it is a aggressive tumor type.  fyi: these tumors are all in lymph nodes, the organs themselves are not involved, except in that the tumors can put quite severe pressure on the organs.

After my last blog, in which I said that Motzer had suggested that chemo options were pretty much exhausted, he has now suggested a new one.  When pressed,  he admits that it's efficacy is a long shot.  But he explained that many patients benefit from feeling that they are trying something.  My thinking for now is to postpone this. I am still working with the pain clinic to try to find a good balance of pain drugs, and am reluctant to introduce a new set of possible side effects. My current plan is to wait until after Barnard's graduation and perhaps try something then.  Or maybe not.

I am mostly home, and would welcome visits, if you are nearby. But please call first.  I sleep a lot.

Sunday, April 1, 2012

April Fool's ( if only)

I came into the hospital on Tuesday with severe pain. Several tests indicated that I have pancreatitis, the origin of which is still not clear. The tests also showed that the chemotherapy is no longer working. There are no other reasonable chemotherapy options for this kind of cancer. A new phase begins which involves watchful waiting and treating symptoms as they arise.

In the short term we hope that they find a way to treat the pancreatitis or alleviate the symptoms so that I can go home this week.

Tuesday, March 13, 2012

The Saga of the Bed

Finding  myself in bed more than usual, I decided a few months ago that it was time to replace my saggy mattress.  There is a Sleepys nearby, so I stopped by on a Sunday walk in early January.  Before long, the charming salesman had talked me into a memory foam bed, with a frame so the head and feet can be raised, and even can vibrate.  When I called this a "hospital" bed, I was quickly corrected: this  is a "lifestyle" bed.  I said I wanted a very firm mattress, and he kept saying that I should just try them out.  Note to self: this is not a good way to choose a firm mattress.  They sold Tempupedic and various competitors.  He told me about a 90 day return on mattresses.  Note to self: listen carefully next time, as it turned out that I bought a competitor's brand for which the return period is much shorter.

So this splendid and extravagant bed arrived, with much fanfare. There was even an audience that day.  I posted this on Facebook, and received many supporting notes.  All was well, for a while.  But over time the mattress got softer and softer.  It sagged over the side when I got in and out, and had a deep trough under my butt.  With my fluid problems, this was a serious issue, as the excess fluid in my body would collect at this low point.  I took to sleeping on my living room sofa.

Helene stopped by the store last week.  Bad news: I was well past the exchange date. But there are other firmer memory foam mattresses, as well as conventional mattresses that work with the lifestyle frame.  I decided to swallow hard and simply accept the cost of a new mattress.  However I have not felt well enough to mattress shop since my last round of hospitalizations.  Diana came by for a visit last weekend, determined to solve this.

She went to the store on Saturday and found the best mattress. They said that they could deliver it Sunday. One small wrinkle: a house rule in my coop is no Sunday deliveries.  But it is just a mattress exchange, we reasoned, and with luck it could happen so quickly Sunday morning that no one would be the wiser.  With luck?  By now I should know better!  Just at noon, the Sleepys guys pounded on the door of 5B (I live in 15B) waking the shareholder.  She called Moe, the super, who sent the delivery guys packing and came to my apartment.  Moe is a fine upstanding man, and I knew the rules.  So I hid.  Diana managed to sweet talk Moe into allowing the delivery if the truck would come back, and got the salesman to recall the truck.  Fifteen minutes later, new mattress, bed made, etc.  Diana did not miss her train.

I am no longer sleeping on the sofa.  The cat likes the vibrating bed.  Elevating my head helps with my breathing.  I just need to get back on Moe's good side.  They say that when you are seriously ill, you should have a companion at the  doctor's, so you remember what is said and don't do anything foolish.  Same thing goes for the bed store, I guess.  Thanks, Diana, for sorting this all out. Oh, and for the new mattress, too.

Friday, March 2, 2012

My Mediport Failed

I was so happy to have the Mediport that I blithely ignored the fact that the site became red and inflamed over the weekend.  I pretended all was well, and showed up for my chemo on Wednesday all ready not to have a venous stick.  Alas, the chemo nurse took one look, said that it did not look right, and summoned a doctor. Next thing I know I am sent to urgent care (UCC) and after a pretty long day there, was readmitted to Memorial.  It is one of the mysteries of my new life that one sits on a gurney in the hallway of UCC for hours after the decision has been made to admit. Do all hospitals do that?

Wednesday night in the hospital, and Thursday morning lots of consultation.  Was it infected, or a bleed? Cculd the port be salvaged? Back on Vancomycin, in case of infection, and back to to IR suite in the late afternoon. I had to wait until then to let the effects of the Lovemax thinners clear.  By now it is pretty clear that it is a bleed, not an infection, but the IR doctor decided it was prudent to take the whole thing out.  So they did, again under partial anesthesia: no pain, but vaguely and unsettlingly aware of the digging around to remove debris.  The site is much better today, it was quite swollen and angry.  But still a bit painful.

So the new challenge is that I am both a clotter and a bleeder; hematology is now officially part of my team. Unlike the bleed in the fall, this one was not entirely spontaneous, but bleeds with  Mediport insertions are unusual, I am told. [Frankly, I am tired of my ability to find the unusual.]  For now they are going to suspend the Lovemax and try to sort things out. I will not miss the injections. I think the plan is to try to put in a new Mediport in a couple of weeks.  There was some talk of inserting a PICC line in the interim, but I would rather have the skillful chemo nurses find veins than deal with that. (The Mediport is entirely subcutaneous, while a PICC line sticks out of the skin and requires more maintenance. I don't need something else that can go wring right now.)

I am sitting in the hospital, a second night deemed necessary to monitor the site for infection and come up with a plan about the blood. They are going to try to do a Torisel (chemo) infusion before I leave, but there are apparently problems (insurance?) converting an outpatient procedure to an inpatient.  But when this is done (or they decide it impossible) I will be heading home.  I have had enough of this place for a while.

UPDATE: Home, 4:30 pm. Thanks, Babbie.

Mom is coming for a visit on Sunday. Thanks, June. I look forward to seeing you.

Sunday, February 26, 2012

Home Again

I was released from the hospital on Friday, brought home by Sue Sacks (many thanks!).   We even managed to stop my the urgent care center and found my shoes which failed to make it upstairs to my room.  They had a huge bag of abandoned footwear.  I picture all sorts of patients leaving the hospital stocking footed, wondering where their shoes went.

This stay was so long (eight days) because they take pulmonary embolisms very seriously. Alas, the CT with contrast showed a bunch of blood clots in my body. It seems that this is a common consequence of cancer. This means that even with my IVC filter, I am at serious risk of a clot moving where it can do serious damage, either a pulmonary embolism, which can damage the heart, or to the brain, causing stroke. So it is imperative that I go back on blood thinners, forever. In the hospital, they prefer heparin drip since its effects are immediately reversible. They shut off the heparin before the IR procedure to insert the Mediport, and bleeding was not an issue.  At home, they strongly prefer twice-daily injections of low molecular weight heparin, Lovenox, over other thinners like Coumadin. When even my oncologist niece, Allison, said that the Lovenox is better, I agreed. I am finding injecting them into the upper thigh easier than into the belly, especially into my poor beleaguered belly.

The pneumonia was a secondary but still serious concern, since it keeps coming back. So they brought out the big guns, including IV Vancomycin.  This antibiotic of last resort, since it has not yet encountered resistance, amused me since it has been a major research focus of my brother-in-law, Chris. I was sent home with another high-tech oral antibiotic, Augmentin, which, according to Chris, who has literally written a book on antibiotics, is a combination of ampicillin with an enzyme that counters the usual factors that lead to its resistance.  This one was studied by Chris's Harvard colleague and good friend, Jeremy Knowles.  Thanks, chemistry colleagues.

Since I came in with chest pain, and since pulmonary embolisms can damage the heart, the cardiac team has been added to my case.  When Diana was visiting we laughed at the large number of docs who stopped by for a quick visit and check.  Pulmonary, cardiac, hematology, renal, pain management, counseling.  Oh, and physical therapy and who knows what else.  Of course each will show up on the bill.  So we began saying "ka-ching" as each one left, and imagined a world where the patient, concerned about costs, cold ask each doc as she or he arrived, what the visit would cost, and politely decline some.

I had an echocardiogram at one point, heart fine. This is a curiously intimate procedure as the technician places the probe just to the side of the breast and manipulates it around for a good ten minutes. This technician was good, distracting me from the contact by encouraging me to watch the images, including false-color Doppler imaging. He commented that many people don't want to look, but I found it quite fascinating.

The team that sees you daily consists of the senior Attending, a bunch of Fellows, and some residents. One resident would see me first, often before dawn, and report to the team before  rounds. I will call him Dr. Paul. He came by often. Very young, of course, and quite handsome, he had a wonderful bedside manner. When I was quite unhappy about going back on injections, picturing the misery that had followed this in the fall, he sat holding my hand carefully explaining the benefits. On the first day that I was scheduled to the insertion of the Mediport, when I fasted starting at midnight only to be told at 3:30 PM that there was no room for me on the schedule, I think he was more upset that I. When I told him that I would prefer coming home with prescriptions rather that the drugs, since waiting for the pharmacy had delayed my release twice before, he explained that he wanted his patients to go home with the actual meds, and he would see to it that there was no delay.  Then it turned out that the pharmacy there didn't have the Augmentum. Calls to my local pharmacy showed that they had it, but then the insurance company added an extra wrinkle, saying that this required special approval. Diana made many calls, until it was promised, but the pharmacy closed before she arrived to pick it up. But sweet Dr. Paul had said he wouldn't sleep if he thought I didn't have it, so we didn't tell him. (Sue picked it up on the way from the hospital. Its special status resulted in a $50 co-pay.)

My roommate, Risa, was most envious of the attention I received from Dr. Paul.  Her resident would breeze in and out so fast that Risa didn't have time to formulate the many questions she wanted to ask. I was quite lucky.  Thank-you, Dr. Paul. (I didn't call him that.)

The Mediport is a great addition, even as the insertion site is still very sore today. Inserted by an IR doc, it lies completely under the skin, a couple of inches below my right collar bone. It was ready for use right away. Both blood draws and IV infusions can go through the port. A needle goes through the skin and a septum below, attaching the various hoses for access. When the process is all done, the needle and hoses are removed, and all that remains is a small bump under the skin. The poor veins in my arms had been poked so much that even the better nurses were struggling to find a vein.  It will make my weekly infusions easier, and will be a great help in future hospitalizations.  But the blood thinner has to go in muscle.

I am again grotesquely bloated. The CT contrast fluid is harmful to kidneys, and my one kidney needs special care. So long as the creatinine levels were up, indicating kidney distress, they pushed and pushed and pushed saline. I gained 35 pounds, no exaggeration. Most is on the lower half of my body, legs swollen almost beyond recognition, and lots of extra girth about my middle. I don't fold well, even to sit up. This will pass over time, but is certainly a major discomfort at this point.

In an earlier blog I made a crack about a whiner, and from the above you can see that I do whine.  But I am grateful for the fantastic nurses at MSKCC, for the excellent care there, for sweet Dr. Paul, for Diana for coming down from Boston, for Helene who is always around, or so it seems, and for the many friends who stopped by for a visit.

Until the swelling in my legs subsides I do not picture forays outside, but I would welcome brief visits to break up the day. Give me a call.