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.

Thursday, February 23, 2012

A Big Favor

Mom is feeling very unhappy that she cannot jump in a car and come see me.  If anyone in the Philadelphia area with a day to spare would like to do me a huge mitzvah (good deed), it would be wonderful if someone could go to Foulkeways and bring her to NYC for a brief visit (an hour or two would be plenty) and then drop her back at Foulkeways in Gwynedd. Please call Bill (941-387-9320) for directions and to work out a convenient time.

UPDATE:  My wonderful cousin, June Jenkins Hodges, is bringing Mom next Sunday.  So we are fixed for now.  Many thanks.

Saturday, February 18, 2012

Back in the Hospital

Warning: a lot of medical detail follows. Skip to the last paragraph to avoid this.

I have been doing better recently. Saw a pain doctor at MSKCC on Monday, and a shrink on Wednesday. Talking to her may be useful in the future, despite her tender years. But as I was busy taking acting to address the fact that I was having some difficulty getting going, my breathing was getting worse, sufficiently so that I was sent by Motzer's folks to urgent care on Thursday, and was admitted to Memorial Hospital that night.

Several hypotheses were abandoned and rejected, including broken ribs. They finally decided that a CT scan with contrast was essential, despite my allergic history. No hives this time, mirabile dictu. But the problem with sensitive tests is that they find things. A standard X-ray showed some pleural fluid, but not enough to explain the pain. The CT confirmed this, but also found a pulmonary embolism, on the other side from the pain, a bit curious. They take these seriously, and they are consistent with some symptoms. So treatment begins.

Treatment consists of IV Heparin, with careful monitoring of blood for coagulation properties and signs of a bleed. For me, the most likely site would be the abdominal wall, where I had the previous hemotoma while on heparin. A surgical team is watching my belly (quite am image). So at least a few more days here, I guess. I hope I don't have to be on Heparin for long, I associate that with too much misery this fall.

Once again I am accumulating roommate stories. This one, Risa, is a classic yenta. But my first story is only peripherally about her. Midday Friday a Rabbi stopped by, offering electric candles for the traditional sundown candle lighting, starting the Sabbath. She said yes. Did they arrive? No. So much for hospital pastoral services! Fortunately she is observant, but not terribly upset; indeed she may have said yes to be polite.

So here I am, in the hospital again, missing a Pocono weekend I had looked forward to. But as always, the care is excellent. Room service is a bit iffy, orders sometimes a bit confused. But the food is not bad.

Thursday, February 9, 2012

Long Day at Motzerville

Saw Motzer today. Very long visit: the 9:45 AM appointment turned into seeing him at 12:15 PM; I didn't get home until 4:30. My friend Helene had to go teach before the infusions started. The treatment was uneventful, with just one stick. (These very competent nurses gave up finding a vein in the fellow in the next cubicle.) The news from the CT scans last week is again very good: tumors the same or smaller. Curiously, Motzer carefully reiterated the fact that treatment will not get rid of them. But holding is very good.

Despite the improved breathing from December, I am still struggling with belly pain (both at the site of the incisional hernia and elsewhere), some other pain, and extreme fatigue.  I am taking daily walks in this lovely weather, but it is very hard. I had already made an appointment to see someone in the MSKCC counseling service, since depression is probably a factor. Motzer suggested seeing a surgeon at MSKCC who can look at the hernia and consider options (surgery is not desirable, since that would require suspension of the treatments for a month), and also someone from their pain management group. So I will be at MSKCC a couple of days a week in the near future. But I am glad to be trying to do something about feeling so debilitated.

Helene says "nobody likes a whiner."