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!