Saturday, December 31, 2011

New Year

New Years, when we are enjoined to reflect on the past year and hope for the new, is not a good holiday for the seriously ill.  A recent message from a wise friend offered a better suggestion: do what you can to enjoy the moment.

Last fall My sister Diana asked me what she could do to help, and I immediately asked her to make family plans for Mom for Christmas. In recent years it has been just Mom and me, sometimes in NYC, but usually in the Poconos. Lots of folks come there for New Year's, but it is pretty deserted over Christmas, and the heated part of our house is pretty small. Last year we took an Christmas afternoon trip to the new Casino at Mount Airy Lodge: an appalling place, a desperate diversion.

So this year we spent Christmas weekend at Bill and Bonnie's house in Annapolis. We stayed at a nice Mariott, overlooking the harbor.  The Walshes brought Mom, and I came by train.  It was a lovely visit.  Mom hadn't spent much time with grandson Bob in years, and they enjoyed each others company. Granddaughter Dorothy and her family came by Christmas afternoon, and everyone was charmed by William, 6, and Julia, 3.  Bonnie's collection of Spode Christmas china graced the table, and Bill, Bonnie, and Bob prepared a feast.

My breathing problems had subsided a bit earlier the previous week, but returned later, along with the sharp pain.  Morphine helped, but the smallest effort was unpleasant. So I mostly sat still in a comfortable chair in the corner, wishing I could contribute more.  The first night I was not sure I was going to make it through the weekend without having to return to NYC, but with everyone's help it worked.

Diana and Chris drove Mom back to Foulkeways, and then to NYC.  We had plans to spend some time together enjoying the city.  I called Motzer's office Tuesday morning to tell them about the breathing issues, and was told to go to Urgent Care.  Blood work and x-rays showed no new evidence of infection or increased pleural fluid, so I was not admitted, a relief.  The doc said that pulmonary embolism is a possibility.  Unfortunately the way to see clots is a CT with injected contrast agent, which I cannot tolerate.  But other evidence (pulse normal, pain in exactly same place) makes a clot unlikely.  I was sent home with a new course of antibiotics, in case of hidden infection.

I rested quietly Tuesday afternoon and Wednesday morning, and was feeling well enough that I was able to go with the Walshes to see the Wednesday matinee Porgy and Bess. The production is wonderful and Chris had sprung for fantastic seats. I felt fine during the show, and was so glad to salvage this part of our lovely plans.  Fortunately the Walshes met friends and saw some movies, so I hope they enjoyed the NY phase of their visit.

Treatment and CT scans on Thursday.  It had looked to be a long day, but the infusion went quickly; Diana joined Helene and me for part of that, so it was very jolly.  Just one stick to find a vein this time; last week had taken three.  We got to the imaging center at 11:00; we were supposed to be there at 12:40 to drink the wretched fluid, with the scan at 1:40.  They weren't busy, and said they could take me soon.  All done by noon!

I am scheduled to see Motzer Tuesday, rather that the usual Thursday, because a couple of months ago Diana had suggested and planned a Florida trip. We were going to leave Wednesday, and stay a week. I decided today that this happy plan really isn't practical. While I am breathing slightly better, the continued Morphine results in stomach upset, so I just think that quiet time in NY sounds more appealing right now than Miami fun.  For the same reason, I am not at the lake for New Year's.

Perhaps I will know more with the scan results, but I have learned not to expect too much. Have the tumors advanced? What does that mean? Is this breathing problem directly related to the disease or the treatments, or just an infection?  What's next?  We will see what Motzer has to say.

Happy New Year.  Enjoy the moment.

Wednesday, December 21, 2011

Some quiet time before the holidays

I have been taking things easy since my last hospital stay.  When I saw Motzer almost two weeks ago, he commented that my pneumonia-like symptoms could be a side effect of the treatment.  They never found any bacteria in the cultures.  Torisel can cause lung problems, but usually more diffuse that my very localized distress.  However my first round of pneumonia was before I was on the Torisel.  But Afinitor, which I was taking before, and Torisel are closely related.  So dealing with more uncertainty, we are working on the hypothesis for now that it was pneumonia, so weekly Torisel infusions have resumed.

I still have residual chest pain which comes and goes. Time-release Morphine is very nice. The other complaint when I left the hospital (I hope my blog does not become simply a litany of complaints) was that I was terribly bloated: face, legs, etc.  My skin actually felt as if it was too small.  As I shed the excess fluid over the next few days my skin became itchy and sore in various places; this is mostly gone now.  I also learned in the hospital that part of the reason for my protruding belly (my soccer ball) is that I have developed a fairly large hernia along the nephrectomy incision.  While this could be repaired surgically, the advice of Motzer’s people is that the hernia is not dangerous (larger is apparently less problematic than smaller, since it is less likely to pinch the intestine), so I don’t need to add that to my plate.  It continues to astound me how varied the complications of this illness continue to be!

I have been getting a bit of Barnard work done, but mostly relaxing, enjoying some visits from friends.  Off to Annapolis on Friday to spend Christmas weekend with most of my family, then back to NYC with Diana and Chris for a few days.  Treatment and the next round of CT scans on the 29th, then off to PLP for New Year’s weekend.

I promised on the previous post to comment on roommates.  Let me tell you about one: Pepsi.  She arrived around 2 AM Saturday morning.  The nurses were coming and going to get her settled in, so it was noisy, and I am a very light sleeper.  I heard her ask the nurses in her broad Brooklyn accent whether they were disturbing me.  After things settled down, I, somewhat warily, introduced myself through the curtain.  We exchanged a few pleasantries and I fell back asleep.  The following morning when we were both awake I heard her story.  She is on twice-daily blood thinner injections, as I was previously.  Her insurance company entered the prescription information wrong, and approved her for one syringe a day.  (These are very expensive; a box of 14 is about $2000.  The irony is that I have an unused box at home; prescription medications cannot be returned.)  Friday morning she called them to try to straighten things out.  Many long conversations.  By late afternoon, her insurance person told her their computer was down, so they could do nothing before Monday.  Eventually her doctor told her to come to the hospital, so she was admitted, arriving by ambulance.  Insurance will cover three days in the hospital (maybe $25K), but not the medicine.

Once she had her meds, she was doing fine.  She asked me when I was going up to fifteen.  Fifteen, I asked?  Yes, the 15th floor of Memorial Hospital has a library, pool table, card games, movies, activities like watercolor painting, etc.  She had taken up watercolor painting in a previous admission, and was now quite accomplished.  (Pepsi did not lack self-esteem, but she was utterly charming.)  She wanted to get up there ASAP.  She offered to help me with my IV line, and promised wonderful fun.  Alas, I declined.  A bit later (she was finishing her breakfast) she rang for the nurse, and asked for some disposable underwear.  The nurse came back quickly and handed her a package.  After the nurse left, Pepsi told me that she was going to sneak up to the 10th floor (which deals with gynecological cancers) since they had much nicer disposable undies!  She then put in a request for a transfer to 10, which came through the following day.  As she left, she said she had enjoyed having me as a roommate, but there was just better stuff on 10.  The power of pink ribbons, I surmise.  I did not make it to 15 this time.

Friday, December 2, 2011

A new metaphor

I had described this journey as a bumpy road, but have decided that a roller coaster is more apt.  Lovely thanksgiving weekend, as I said in the previous post, and looking forward to a fairly busy week, with candidates for a new faculty position coming through. Tuesday afternoon (11/29) I began to feel the sharp chest pain that I had had a month ago with pneumonia; by Wednesday morning it was more intense and I was having trouble breathing.  So off to the Urgent Care Center at MSKCC.  

Long day of mostly nothing happening.  One doctor said it could be a new tumor in the lung, or it could be a pulmonary embolism, despite my IVC filter.  So they did a CT scan, no contrast. Well guess what?  Pneumonia again.  Strange, since I was not coughing or congested, and had no fever.  (These all emerged in the next few days.)  The CT showed a small amount of fluid in the right pleural cavity, with bubbles.  So I was admitted. In this wacky world I now inhabit, pneumonia is good news.  

They were stingy with the pain meds in the UCC this time, but upstairs this was not so. They gave me enough morphine to sedate a horse, and when it still hurt to breathe deeply, they added more.  Plus lots of IV antibiotics. A lung team was consulted.  If the volume of fluid in the lung cavity had been larger, they  would have removed it with a needle. Bubbles suggest infection, and antibiotics do not reach the pleural cavity: no vasculature. It is important go get rid of possibly infected fluid.  Who are you going to call?  An interventional radiologist!  (If you read an earlier blog, you may observe that the IR is not my favorite specialist.)  Another night of fasting.

Went to the IR suite as 12:15 PM Thursday.  Different room for the procedure this month: not the one that looks and feels like a sports bar, with giant TV's and testosterone-enhanced docs.  The IR doc was the first one I saw a month ago, the one who was less of a jerk. Drain inserted by 2:30 PM. Unpleasant.  300 mL of fluid was removed right away, this pleased everyone. A few more mL continued to drain each day.  The tube did limit my mobility: it drained into an elaborate box that allowed them to measure volumes with exquisite precision.  As far as I could tell, such precision was unimportant.  But when I wanted to get out of bed, the whole contraption had to be put on my IV pole.  Observation: we stroll around the floor pushing our IV poles, some carrying an impressive array of tubes, pumps, and bags.  Do more convey cancer center status?

Somewhere along the way I had another overnight blood transfusion.  I don't recall being told why.  But given the frequency with which they draw blood, it is not surprising that my Hemoglobin and blood count were low.

Monday afternoon: drain out, and a shower.  Tremendous improvement in quality of life.  I had had five visitors that day, much appreciated. I think they enjoyed meeting each other; none were acquainted before.  Tube out, but still no mention of my release.  It is confusing to figure out who to ask because sometimes it seemed that the lung guys called the shots, sometimes the IR guy, sometimes the Attending, or even Brad, the resident who talked to me the most.  Finally, the team consults by phone with Motzer.  Often the nurses will tell you who seems to be in charge, but they need to be careful and discreet.

Tuesday: Brad comes in and says that I will probably go home today.  The new Attending, a nice Barnard alumna (this job is rotated among senior physicians), later confirms this, as the flotilla conducting rounds passes by.  She says that when they cultured the lung fluid, they found no infection and saw no cancer cells: very good news. A new lung person stops by later.  She says that I might go home with new antibiotics, since they never found the source of infection.  (P.S.: new antibiotics were not included in my final swag bag.)

Brad and my nurse, Mike, say that someone will collect all the meds I will need, and I will probably leave after lunch.  It was getting dark before it was all organized; pharmacy issues, again.  Rainy rush hour so cabs were non-existent, so we took two buses.  It was actually sort of relaxing and nice to see the holiday colors in the rain.  Thanks, as always, to Helene for getting me through all this.

I see Motzer tomorrow morning.  Perhaps my regular Thursday infusions will resume.

I save for a later blog adventures with hospital roommates. 

Note: I started this post in the hospital, but rewrote much of it today (12/7). I find editing Blogspot difficult with the iPad.  But iPads and Wifi sure do make being in the hospital a lot nicer!

Monday, November 28, 2011

Thanksgiving in the Poconos

Lovely Thanksgiving in the Poconos with friends: Prestons, Crawfords, and Nellsons.  Lots of children running around, a couple of lovely entertaining new Preston girlfriends (or friends, female), so busy times throughout.  The weather was great all weekend: bright and sunny with spectacular sunrises and sunsets.  One of my pleasures on these off-season visits used to be long walks in the woods.  At this point, a mile on the flat is challenge enough for me, but I did enjoy several strolls along the road by the lake.  But lots or reading, sitting by a roaring fire, talking, feasting (special thanks to Bob Nellson, on left in photo) and just enjoying friends old and new.

My health came up in conversation often enough that there was no awkward sense of avoiding it, yet not too often.  I did find that a late afternoon Morphine made it easier to enjoy sitting at the dinner table.  (In lieu of a forbidden glass of wine?)  I still have what feels (and even looks) like a soccer ball in my belly, and it can be painful.  Whether this is a residual effect of the abdominal bleed or something else I don't know; one of the tumors is somewhere in the pelvic area, so that is a scary alternative (I have not asked the docs).  Presumably the next CT scan in mid-December will resolve this.  In the meantime, the weekly Torisel infusion appears to be more tolerable that the previous regimen.  I no longer have a sore mouth, so I enjoyed pizza.

Thanks to Brad for cleaning out my gutters and sweeping the roof, to Margy for a nice visit, to Janet for a visit and taking my trash to the dump, and always to Francie and Sam and Giny and Don for hospitality in my PLP home-away-from-home.  Finally, to Helene for minding Cosmos (my cat) in NYC; he does not appreciate car rides. 

I did find it hard saying goodbye to people at the weekend's end.

Tuesday, November 15, 2011


My sister Diana and I went to California this weekend to visit her daughter, Allison, and family.  While I had seen many photos and videos of three-year-old Sean, I had not actually met him before.  A wonderful visit all around.  Sean runs and talks nonstop.  We went to the Children's Discovery Museum on San Jose which, among other delights, has a marvelous water play area, and to Ardenwood Farm in Fremont with a train and farm animals.  Allison and Thomas lead such busy lives that it was lovely to relax with them.

I am feeling much better.  Still have belly pain, enough to sometimes take morphine (milder pain remedies still not allowed). I have felt slightly nauseated for nearly a week, a minor if persistent annoyance.  One of the frustrations is not knowing what is chemo, what might be cancer, or what could be something else entirely.  I am not sure why it matters, but it seems to, to me.

Is it feeling unwell that constantly reminds me that I inhabit a different world from the one I was in before I was sick, or is that simply a fact of my new life, with its very different future?  I don't know.  But diversions like this weekend are welcome forays back into the land of the living.  Thanks, Diana, for arranging this.

Thursday, November 10, 2011


I saw Motzer and the team today.  (Busy day in Motzerville; waiting room packed with patients.)  Compared to a week ago, I am feeling much better, with the pneumonia pretty much gone and the remnants of the belly bleed much less.  So everyone was cheerful and upbeat.

I learned a few things that Motzer may have told me last week, but I simply didn't take in; I wasn't functioning well. I am officially off the study combining Avastin and Everolimus. Even though I have now recovered from most of the side effects, they were simply too many to ignore. So today I started a new regimen:  weekly infusions of Torisel (Temsirolimus).  Like Everolimus, this is a kinase inhibitor.  Allergic reactions are sufficiently common that the infusion starts with Benedryl, followed by the Torisel; the whole process takes about an hour. Fortunately I had no adverse reactions. In mid-December I will have more CT scans, without contrast, due to my allergic reaction.

Is this good news or bad?  The October scans showed that the combined therapy  was showing some efficacy (shrinking the tumors), and effective treatments for late-stage renal cell carcinomas are rare. But if the treatment made me so sick that I could not function, it is not worth it and cannot continue, or so is the conclusion of the MSKCC team.  This makes sense for now.  Treatment is clearly a process of trial and error, each patient different. The good thing about being at MSKCC is that they have seen so much and have many options.

My sister Diana and I are flying to California tomorrow for a quick visit with her daughter, Allison, and her family. Allison is an oncologist, so I should be in good hands all around.  Three-year-old Sean should keep us entertained. Back to NYC on Monday.

Thursday, October 27, 2011

More activity

I had hoped this week to move on to a more reflective blog post, but it has been busy, so I will just report.  The short version is that I was in Memorial Hospital for two days, now have a filter in my inferior vena cava, and am home mending, hoping that the challenges of the last few weeks are behind me.

The longer version (only for people who like medical details!)

I have been injecting a low molecular weight Heparin twice daily into my abdomen for about three weeks now, to deal with the blood clots from the Avastin.  I have also been struggling with a cold that ended into a deep chest cough.  The coughing caused more abdominal pain, but that came and went. Last weekend I was feeling pretty good; nice dinner party here Saturday night, and I went to Pocono on a beautiful fall day for a Board meeting on Sunday.  But Sunday night the belly pain got worse, and continued to do so Monday.  I called the oncologist's office and was told to go to the urgent care center (UCC) at MSKCC.  Many more tests, culminating in a CT scan, and admission to Memorial Hospital.  Seems I had somehow (coughing?) broken a blood vessel in my abdominal wall.  It had bled profusely due to the Heparin, so I had a large volume of blood there.  (My poor abused abdomen was quite distended and very painful to touch.  But it has never been a pretty sight.)

That night they gave me Morphine for pain and a blood transfusion since my Hemoglobin had fallen considerably.  The next morning I felt a little better.  They started me on oxygen (with the cough I had not been breathing well), as well as a nebulizer with Albuterol.  My temperature rose to 100.7 F.  That seemed to galvanize the attention of the team of docs, so IV antibiotics were started.  Interestingly, no one said "pneumonia" but it appeared that that was what they were treating.

In the meantime, they had decided on an entirely new strategy to deal with the clots.  A filter (actually a little metal device that looks like a fabric-less umbrella) can be inserted into the inferior vena cava (IVC) to catch clots that might otherwise do mischief.  Done by an interventional radiologist (they insert stents etc.) through an incision in the neck.  This was scheduled for that night.

I was taken to the interventional radiology (IR) department in the early evening.  The doctor (and don't call them a radiologist unless you want a scolding: "interventional" is very important) explained the procedure, and I signed a consent form.  Then the anesthesiologist came in and listened to my lungs and said no way.  Since my breathing was already impaired, and since I was known to be allergic to the required contrast agent, it was too risky.  A bit of an argument between them, but back upstairs I went.

Lots of more activity to improve the lungs the next day: nebulizer, oxygen, etc., and I was really breathing better.  Prednisone and benedryl again, to keep the allergic reaction at bay.  And no eating after midnight.  I am beginning to think of fasting as the MSKCC diet. The procedure was scheduled for 2:30, then 4:30, then...

Back to the IR waiting area around 5:30.  Another pissing contest.  The anesthesiologist came in first, asked a few questions, but had not started the physical exam.  The IR doc (both were different from the previous day) breezed in, interrupted her, described the procedure to me, got the consent form, etc.  The anesthesiologist suggest that he slow down, she needed to see if I was ok for it yet, that it had been properly stopped the night before.  The IR doc puffed up and said this was not elective: precisely since I had lung problems, preventing a pulmonary embolism made the procedure necessary.   She politely said that she needed to examine me.  I was not happy: I would prefer that the docs doing the procedure not be at war.  Fortunately she was convinced that my lungs sounded ok, so she was ok to proceed.  Was this a gender dynamic, or was it a dump-on-the-anesthesiologist power play, or both?  My GP has made snide remarks about anesthesiologists' penchant for excessive caution.  But I, the patient, want a cautious anesthesiologist!

Anyway the procedure went well.  It took about 30 minutes, and I was awake throughout.  The catheter moves right through the beating heart, but the image was not up on the jumbotron screens that I could see.  I think he placed the device above the renal vein, since there is still a tumor there, and tumors can throw clots.  The more standard placement it a bit lower.  And I didn't develop any hives.

Back in my hospital room at around 8 PM.  The nurse said it was my call on whether to go home then or the next morning.  I said I was ready to go.  She had to work hard to make it happen: find the pain meds that were supposed to be ready for me, get instructions that the IR people hadn't given me, etc.  But the nurses at MSKCC are unfailingly helpful and supportive, so we left at 11 PM.  The many postponements had made it possible for my faithful friend Helene to be there for the procedure and to escort me home.

Still a very painful belly, but it should heal on its own.  I am very glad to be off the injections!  And cancer doctors do not hesitate to hand out serious pain medications, so I have morphine pills. (Still off both Tylenol and NSAIDS.) The antibiotics should help with the lung and cough, I hope.  The Avastin scheduled for today postponed a week, but perhaps then the full double-barreled treatment can resume.

Wednesday, October 19, 2011

Quick Update

Back at MSKCC yesterday.  Liver enzymes better, but still level 2; were level 3.  If they get back to level 1 by next week, we will restart the Everolimus, but at a lower dose at first.  For my chemist friends, they seem to care about ALT (alanine aminotransferase): supposed to be 5 to 37, mine was 282, back to 150, and AST (aspartate aminotransferase): supposed to be 10 to 37, mine was 263, back to 63.  If that goes well, we can slowly try adding the other possible culprits one by one (Tylenol, alcohol, Lipitor).  So I am adjusting to being a teetotaler.

Lab test results are posted for patients on the MSKCC web site.  TMI?  Need I really know that my LDH was way up yesterday, and no one seemed concerned?  Is my hemoglobin falling because of the heparin?  Should I be concerned that LDL-cholesterol is up without Lipitor?  Should I be asking my oncologist about these, or simply assume that he sees what is important?  It is the era of the informed patient, even when that information is pretty abstruse.  I am a chemist, so I know what these molecules are, but I have no idea which ones matter most.

A couple of people have had problems making comments on the blog.  I have changed the settings and I think it is OK now.  Please send me an e-mail if you have difficulties.

Thursday, October 13, 2011

It's working, but...

Pauline, the nurse from MSKCC with the lovely Irish brogue, called yesterday.  Tuesday's blood tests indicate liver problems.  So while the two drugs are working, one causes blood clots and the other messes up the liver!  At least that is the hypothesis for now.  Off Everolimus for a while (also off Tylenol, Lipitor, wine...), back to MSKCC for a liver ultrasound tomorrow.  Oh, and by the way also a chest x-ray to see if this cough is a problem.  Back to MSKCC Tuesday for more blood work to see if the liver is doing better, and to see the oncologist to discuss consequences.  Not an easy week, despite the good news about the tumors.

Too many blog posts this week: time for a little quiet. Afterwards I hope to return to more introspective topics. 

Wednesday, October 12, 2011

Quick update

I saw the oncologist (Motzer) yesterday.  He confirmed that the treatments appear to be working; most of the tumors are a bit smaller. He appeared quite pleased (he is a low key guy), and said we will continue the treatment regime.  So the news is indeed very good.  But dealing with multiple docs can be confusing.  I am sure that the radiologist said "clots in the abdomen" and Motzer said no, it was a clot in the upper leg, but same treatment.  Likewise the urgent care doc said that the clots were probably not due to the chemo, but Motzer says that Avastin often results in clots.  Thus so long as the Avastin is working, I will be injecting Enoxaparin (heparin) twice daily.  It isn't so bad.

Motzer asked about my allergic reaction to the CT contrast fluid.  I assured him that I had taken both prednosine and benedryl, but reacted anyway.  I said I could put up with the hives, if need be.  He laughed and said that while I might be willing, the radiologists would not.  So no contrast fluid next time.  That will make it a bit easier and quicker, perhaps.

The infusion went well, and we left MSKCC around 6 PM, having arrived at 2:30.  Pretty quick, by current standards.

Monday, October 10, 2011

Meltdown over a Cold?

Beautiful weather at the lake this weekend, with lots of people there to enjoy it.  I am beginning to adjust to the twice daily injections of blood thinners. But more side effects! I have always been a bit of a klutz, and now have wounds to show it: bruises and abrasions from minor bumps and scrapes.  

On Saturday morning I began to feel more than the now chronic sore throat: cough, congested chest, headache etc.  I went to a lovely potluck dinner that night, but left early, feeling rotten.  On the short drive home I had a meltdown, feeling totally sorry for myself. People have commented on my calm response to this mess, and even I have been surprised at my equanimity. This was something I had to deal with, so focusing on that was enough.  Not this weekend!

There are many bumps along this road, both physically and emotionally.  Being with good friends who know about my illness and had kind things to say (and do, like bringing stuff up from the dock) turned out to be hard for me. I have never handled sympathy well.  One more challenge.  But I do really appreciate the support, even if at the moment I don't quite know how to deal with it.

Friday, October 7, 2011

Update: (preliminary) good news

LONG day yesterday at MSKCC with complications, but the important news is tentatively good. My friend Helene and I left home at 8 AM for an MRI at 9, CT at 11.  Since I had reacted (hives and racing BP) to the CT contrast agent last time, I took Prednistone at 10 PM, 4 AM (didn't get back to sleep) and 10 AM, with benadryl at 10 AM. Scans went fine, and I was happily ready to leave at noon and get some lunch.  Helene took one look at my face and told me I had hives again.  So back to the nurses for testing (BP again high), further observation, and drinking lots of water to flush the fluid.  As always, wonderful cheerful attentive nurses.  One even remembered how may hives I had had before.  About an hour later, the radiologist came out and said she wanted to speak to me.  She told me that the CT scan had shown blood clots in my abdomen, that she had called my oncogolist, and I needed to go directly to the urgent care canter at Memorial.  Before leaving, I asked her what else the scans showed, and while she was very careful to say that it was very preliminary, but the tumors certainly had not gotten larger and may have gotten a bit smaller.  Very good news! 

The urgent care center: picture an ER for cancer patients, busy place full of very sick people.  I was a bit anxious, and it took quite a while for information to flow around, and to work my way up the chain of command to see a doctor, but the bottom line seems to be that this is not dangerous.  I shouldn't engage in contact sports; the clots will dissolve on their own. But I have to go onto a blood thinner to prevent future clotting.  They do nothing by halves there, so instead of an oral medicine, I must inject Enoxoparin twice daily.  The doc said it is simply better that Coumarin etc. The nurse showed me how, and it is pretty easy, with preloaded syringes.

Clots are apparently often associated with cancer and also with abdominal surgery; apparently the therapy drugs are not at fault, but who knows.  (My niece the oncologist said that she sees clots as a result of CT contrast agents.)  Treatment for indefinite period.

I see my oncolgist on Tuesday.  Had this not happened, I would not have had any news on the scan results until then.  So a little bump in the road and yet more meds and things to watch, but basically very good news.  Thanks to my wonderful friend Helene for spending a very long, sometimes worrisome, and mostly boring day with me at MSKCC.

Monday, October 3, 2011

Optimism vs. realism

Follow-up on what doctors do and do not say
My sister and I talked after a previous post. She commented that she had called her daughter, an oncologist, before she and I first met the oncologists here, to ask what to expect. My niece said that oncologists describe (1) diagnosis, (2) staging, and (3) treatment plan.  They offer a prognosis (“xx months to live” or "yy chance of cure") only if the patient asks.  In a recent e-mail, my niece made the point more strongly: “I believe that discussing prognosis is an invasive procedure, so I try not to thrust it upon patients before they ask.” Interesting. I didn’t ask, and I don’t intend to.

Optimism vs. realism

 A few weeks after the surgery someone asked me “Are you optimistic?” I was nonplussed. The thought running through my head was “I am in pain and dealing with a terrible diagnosis. How can I be optimistic?” But that is not the answer people want. They want to hear that you have a great attitude and are optimistic, because, as goes the narrative, that is why you will beat this thing. Hogwash!
This has vexed me for years. I have seen the damage it can do when therapy fails. The unavoidable corollary to “With the right attitude you will beat this thing” is “It’s your fault if you die. You didn’t have the right attitude.” This is wicked.
There was an excellent opinion piece in the New York Times last January, “A Fighting Spirit won’t save your life”, written by Richard P. Sloan, a Professor at Columbia University Medical Center. (No, I don’t know him, but I did send him an admiring e-mail.) Google it: he makes many good points. His concluding paragraph:
It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.
I consider myself a reasonably optimistic person. (Years ago, I was quoted in Vogue, of all improbable places, as saying that scientists have to be optimistic in order to keep trying when their ideas don’t work.) But as a scientist, I am also a realist. I will try to maintain a positive attitude, since that will help me and those around me in the day-to-day aspects of dealing with this disease. I don’t mind it if you tell me I am positive or brave. Just don’t expect me to smile and agree if you then say that this means I will beat this disease.
But I do love the “Positive Altitudes” Life-is-Good T-shirt I was given for my birthday.

Future topics:
To work during treatment?
Depending on family and friends without overwhelming them (and me)
“You look great” and other comments that stump me.
Language pitfalls

Friday, September 30, 2011

A Quickie

This is just a quick post.  I am enjoying having extra free time in my life, doing more recreational reading (and I always read a lot).  I am most of the way through Oliver Sack's The Mind's Eye.  I have always appreciated his books for their keen observation and deep compassion.  In one chapter of this recent book, he describes vividly his experience with a melanoma in his right eye.  He explains that such melanomas seldom spread and kill, but often result in the loss of sight in the eye.  I was struck by the following, midway through the chapter:

Having cancer, any cancer, means an instant change in status, in one's life.  The diagnosis is a threshold beyond which lies a lifetime, however long, of tests, treatments, and vigilance -- and always, whether conscious or unconscious, a sense of reservation about the future.

Others who have been at this longer than I may have a different viewpoint, but this struck me as very true.