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