May 29, 2011– Back to the Unknown

Best video I’ve seen on general cancer survivorship issues. Link courtesy of Dr. Wendy Harpham, who provided it on her survivorship blog a few weeks ago. It’s a little long – 17 minutes - but worth it:

From Cancer Patient to Cancer Survivor: Lost in Transition from The National Academies on Vimeo.

One of the survivors interviewed describes her experience as going "back to the unknown.” During treatment, in a certain sense you know what you’re up against. Afterwards, you try to reclaim the life you had before, but you find it’s no longer yours. For better or for worse, cancer has transformed it. The life you take up again has been permanently altered by the cancer experience, and there’s a certain amount of grief for what had been hoped for, but will never be. There’s also fear of what could happen, down the road, by way of recurrence.

It’s not all negative, of course. As the video points out, lots of people who go through the cancer treatment ordeal find themselves stronger as a result. That’s certainly been true for me.

I’d love to hear from some survivors, in the comments area, about what you think of the video.

May 28, 2011 – Another 11th-Hour Cancellation

After a rickety wooden footbridge toppled Catherine of Siena into a muddy stream, she is said to have offered up this exasperated prayer, in the hearing of her sisters: “Lord, I know you promise never to give us more than we can handle, but sometimes I wish you didn’t trust me so much.”

I'm beginning to wonder if the Almighty trusts me especially well when it comes to handling last-minute surgical cancellations. It's happened to me twice so far.

The first time was when Dr. Aron Gornish was getting ready to do an excisional biopsy of a swollen lymph node at the base of my neck. I got all the way to the Operating Room that time, when he discovered he could no longer palpate the lymph node (feel it with his fingers), so he decided the better part of valor was to send me home and schedule an ultrasound-guided needle biopsy with an interventional radiology specialist.

I didn’t make it quite that far at Memorial Sloan-Kettering. Just as far as the pre-operative suite. One of Dr. Boyle’s associates had already marked my neck with a felt-tip pen. The nurse was getting ready to insert my IV line, when she noticed a blotchy red rash on my arm.

“Do you have this elsewhere?” she asked.

“Yes,” it’s all over my body. “Claire noticed it this morning.”

“Does it itch?”

“No, I wouldn’t have known it was there till she told me.”

They already knew about the low-grade fever and the general feeling of malaise I’d been having since Wednesday afternoon. After some back-and-forth on the telephone Thursday afternoon, they’d advised me that the fever wasn’t high enough to be of concern. I was supposed to call them immediately, though, if my fever got higher.

It didn’t. But, in 20/20 hindsight, I wish I’d called them back before we’d left for New York, to tell them about the newly-emerged rash. Maybe it would have saved us the better part of a day in the car.

It was interesting to watch how rapidly this safety concern shot up to the top of the pre-surgical pecking order at MSKCC. Within the space of 15 or 20 minutes, two or three nurses had stopped by to examine my rash, then the anesthesiologist, then Dr. Boyle’s associate, then finally the big man himself. I don’t think it’s usual for the principal surgeon to see patients on the day of surgery until they actually enter the Operating Room. When the associate said he was going to get Dr. Boyle, I figured this was serious.

His lighthearted greeting to me was, “Hello, Red Man.” I had to agree it was an accurate description. As soon as I heard that, I figured the decision to cancel had already been made – although Dr. Boyle took me very kindly and gently through the decision-tree he typically worked through to make such a call. After he’d explained all the pros and cons, he’d actually gotten me to ask him to postpone!

This guy’s bedside manner is awesome.

So, after a restorative stop by the basement cafeteria (I hadn’t eaten or drunk anything since midnight, although a side-effect of my mysterious ailment is not having much appetite), Claire nosed the hood of her car into the mean streets, and we began heading home to the Jersey Shore – close to Rush Hour on Memorial Day Weekend.

It took us over 3 hours – even after judicious use of some back roads that, if New Yorkers ever heard any of us locals breathe a hint of their existence, we’d have to kill them.

While sitting in the traffic gridlock, I called both Dr. Cheli's (family practice) and Dr. Lerner’s offices (oncology/hematology), to tell them what was going on and see if they suggested any urgent action. Dr. Cheli’s office was already closed for the long weekend, and the outgoing voicemail greeting spoke of someone calling me back “tomorrrow,” if I left a message. I was quite sure that meant Tuesday. It also gave me an “emergency” number I could call for more immediate attention. I left a non-emergency message, asking for a callback about an appointment as soon as the office is open.

After that, I called Dr. Lerner’s office – which I knew would still be open on a Friday afternoon, even on a holiday weekend. They put me through to the nurses’ voicemail, and I got a call back from Janet, who’s done a lot of my monthly port flushes. She explained that Dr. Lerner had asked her to call me back and tell me it sounded to him like a classic allergic reaction to something, that it was probably unrelated to my lymphoma, and that I should just wait it out.

After thinking about it and discussing it with Claire, I decided not to call Dr. Cheli’s emergency number, and also not to go to the local emergency room. Diagnosing this mysterious ailment – if, indeed, we’ll ever know what it is – is probably going to require a lot of blood work and similar sleuthing. Not something that’s likely to happen on a holiday weekend. Until the problem is identified (viral, bacterial or allergy), nobody who isn’t already thoroughly familiar with my medical history would likely prescribe me any medicine anyway.

So, it’s watch and wait and feel lousy, here at the homefront. I already told Linda, our associate, that I don’t intend to change my former plan to sit the worship services out tomorrow. I’d be not much good to anyone, and besides, I could be contagious.

We’ll reassess on Tuesday, Lord willing and the creek don’t rise.

May 26, 2011 – The Last Drink

Here I am, staying up till midnight, guzzling water. It’s the last liquid I’m allowed to have until after my thyroid surgery tomorrow, which is scheduled for 2:45 pm.

I wish they’d give me a later time for that last drink, when surgery is scheduled for later in the day, as mine is. I’d be willing to set the alarm and get up in the wee hours, if that would mean I’d spend less time tomorrow feeling like I’m crossing the Sahara.

Today some uncertainty arose about whether or not I’ll even have the surgery tomorrow. The reason is that I’m running a low-grade fever. I don’t know what bug I’ve got or where I got it, but I’ve been having intermittent headaches, joint stiffness and feeling general malaise for a couple days now.

After taking Tylenol, I’m only a degree over normal, so the resident from Memorial Sloan-Kettering I spoke with today said we should proceed. He said to keep taking the Tylenol if I still have a slight fever, and call them if it gets any higher.

I sure don’t want to postpone this. Too much mental preparation has gone into it – not to mention clearing my calendar. If the fever proves to be an obstacle, though, so be it. It's up to the docs to make that call.

Not that I’m looking forward to a surgeon cutting my throat, of course. But I know it has to be done. I also know the odds of a successful surgical cure are about as high as they get - close to 100% - so that makes it a lot easier to contemplate.

The later time also means Claire and I will have the distinct pleasure (I’m being sarcastic, of course) of driving across Manhattan in the late morning. The original estimate was for a very early operation, which would have meant – with us having to be there two hours early – that we would have been crossing Midtown around 3 or 4 a.m. New York may be “the city that never sleeps,” but at that hour it would mostly be the Yellow Cabs and the occasional delivery truck we'd have to contend with. Oh, well.

The surgery should last about an hour. Then, it’s an overnight stay in Memorial Hospital, with a return home by car sometime on Saturday. After that, the prediction is for a day or two of recovery, then a return to normal activities.

More details about the surgery may be found here, in my March 28 blog post.

May 10, 2011– Parenting With Cancer

Here’s a new blog that’s worth checking in on from time to time. Parenting With Cancer is the brainchild of a New Jersey NHL survivor, Jen Singer. Her two sons are now in junior high. At the time she was undergoing chemotherapy and losing her hair, they were in elementary school.

A cancer diagnosis is devastating at any age, but for parents of young kids it’s especially hard. What do you tell them? How much will they understand? How to cut back on day-to-day responsibilities and concentrate on healing, when there are young lives depending on you 24/7 for care and nurture?

Our son Ben was in college and our daughter Ania was in high school when I was diagnosed. It was tough enough figuring out how to break the news to them, at that comparatively older age. I can only imagine what it must have been like for Jen, and others in similar circumstances, to tell their much-younger children they’d soon be seeing their mother without any hair.

Kids may not comprehend all the medical details, but at every age they do tend to pick up on the general emotional tenor of the household. I wouldn’t advise parents in Jen’s situation to try to hide the news from their young children. Better to tell them a little, in as non-anxious a way as you can, then wait for them to tell you if they want to know more. Now, here’s the tricky part. Young kids may not be equipped to ask you, in so many words, to tell them more, but even if they aren’t, kids will generally send non-verbal messages that they’re either satisfied or unsatisfied with the briefing you’ve just given them.

I also think it’s OK to get emotional in front of them, if that’s what it takes to be honest and real. You can’t use a young child as your therapist, of course, but for them to see mommy or daddy cry or express anger – and thereby learn that the sky doesn’t fall when that happens – is not a bad thing. Just remember, strength comes in many different packages. Clint Eastwood’s patented squinty-eyed, stone-faced, curled-lip impassivity is only one way of showing it (and probably not the best, in such circumstances). Just think of what a learning it could be for kids to watch their parents wrestle with how to adapt to a really tough piece of news, and come out at the other end of the struggle with an accommodation to the new normal.

Jen talks of listening to a priest’s homily about how wonderful heaven is, a message that she, as a parent and cancer survivor, was not ready to hear. In light of the glories of heaven, the priest was saying, how do we account for human fears of death, except as a stubborn fear of the unknown? Jen’s response:

“Not me. I have a fear of the known. And here’s what I know: If I die and go to Heaven today, I will not be here to raise my children — something I came awfully close to four years ago when doctors found a tumor the size of a softball in my chest.

I wanted to interrupt the priest’s homily, to tell him and the entire congregation that while Heaven sure sounds lovely, I have responsibilities here on earth — two of them — and they aren’t done being raised.”

She also admits to feeling a bit of survivor’s guilt, as she attends the funeral of a neighbor (another young mother), who died of ovarian cancer:

“As I snaked my way through the crowd, hugging person after person that I recognized from town, I realized, This could have been my funeral. And suddenly, I stopped walking. I stopped hugging people. I stopped looking at photos of my neighbor on vacation, on Christmas, at the school where our sons were in kindergarten together.

I stopped and thought about my own kids four years ago, when I was just two months from what could have been my own funeral.

And yet my neighbor is gone and I'm here.”

A cookie-cutter approach to coping with cancer is impossible. We’re all of us different, in one way or another, so we’ve got to chart our own path.

Still, Jen Singer describes herself as a “cancer sherpa.” Like those legendary Himalayan guides, she’s offering her mountain-climbing savvy to others setting out on the journey for a first time. For cancer survivors with young kids, her blog is well worth bookmarking.

May 4, 2011 - Tests, Tests, Tests

On Monday I hopped a New Jersey Transit train for New York City. The destination was Memorial Sloan-Kettering Cancer Center’s midtown outpatient facility, the Rockefeller Outpatient Pavilion. The purpose? Pre-surgical testing, in advance of my thyroidectomy coming up on Friday, May 27, at MSKCC’s Memorial Hospital on the main campus.

My appointment was for 11:15 with Dr. Anna Rita Marcelli, an internal medicine specialist who does pre-surgical screenings. Dr. Jay Boyle will be doing my surgery, but evidently the protocol at MSKCC is for the big surgeons to farm out the prep work to other physicians. These doctors are specialists their own right. Their task is to ferret out any pre-existing conditions that could potentially cause trouble in the operating room. It’s one of the benefits of going to a comprehensive cancer center.

I suppose that means that, if Dr. Boyle is the executive chef, then Dr. Marcelli is the sous-chef. This is not to detract in any way from Dr. Marcelli's abilities; in the world of haute cuisine, a sous-chef is a well-respected role. In fact, in her spare time Dr. Marcelli is a Professor at New York's Weill Cornell Medical College.

I quickly discovered she’s really, really good at what she does – mainly because she uncovered a potential problem in my case that led to a whole lot of additional tests. It also extended my stay in the city from what I’d guessed would be a couple of hours till about 6:30 p.m.

The first thing they did was send me for an electrocardiogram (EKG). Then, I went into a little examining room where a nurse checked my vitals prior to Dr. Marcelli’s examination. As she was taking my blood pressure (which was a little high, but on a subsequent test turned out fine), the nurse inserted my finger into the pulse oximeter, the little clamp with a glowing red LED that always makes me feel like E.T. The pulse oximeter measures the percentage of hemoglobin in the blood that’s saturated with oxygen.

In my case it read 90%, which is borderline for the condition known as hypoxia (abnormally low oxygen level). A normal reading is considered to be 97% or 98%.

I do have obstructive sleep apnea, and use a bipap machine to augment my breathing every night. The negative airflow of the bipap keeps my soft palate from sinking down and blocking my airway, which means I sleep much better with it than without it. One of the side effects of sleep apnea can be hypoxia, so I do want to be sure to talk about it with Dr. Gustavo De La Luz, my pulmonologist, when I get a chance.

As Dr. Marcelli came in, she gave me a thorough physical, but kept coming back to that less-than-stellar oximeter reading. After repeating the test a couple of times, she told me she wanted me to undergo some further tests, right then and there.

Earlier I had told her I’d had a problem last fall with a blood clot in my lower leg, for which I’d had a few visits with Dr. Franklin Frasco, a local vascular specialist. He’d determined that the clot was in a minor artery, and was therefore not in a position to break off and cause an embolism (arterial blockage) in one of the lungs. He told me to lose weight and get more exercise, and also to start wearing compression stockings (all of which I’ve been doing, although more sporadically than I should have). He released me from his care, saying I didn’t need to see him anymore.

Dr. Marcelli told me that, with the combination of my blood-clot history and the borderline oximeter reading, she wanted to rule out an embolism prior to my undergoing anesthesia on the 27th. Now, here’s where the power of a major cancer center like MSKCC comes to bear. Even though the Rockefeller Pavilion is an outpatient facility and not the main hospital, it’s state-of-the-art. They have the capacity, even at that location, to deliver just about any standard diagnostic test you could imagine, on very short notice. Between noon or thereabouts, and the time I finally walked out of the building about 6:30, I’d had an echocardiogram, a CT scan of the chest, an arterial blood test and a series of pulmonary function tests.

All of them I’d had before, except the echocardiogram and the arterial blood test. Still, most all my local experiences of such tests have involved several days of waiting. At MSKCC, once the doctor ordered it, the tests were stacked up one after the other in no time, and I swiftly went from each one to the next.

Dr. Marcelli had told me that, if there were any sign of an embolism, she would recommend that I confer immediately with another doctor, to determine “what to do next.” I took that to mean immediate hospitalization, and probably treatment with blood-thinners. At the end of the day (literally), no one suggested anything so drastic. Several subsequent pulse oximeter readings were at 96%, a considerable improvement from earlier in the day, and evidently no one saw anything worrisome in the CT scan or echocardiogram results, so I was cleared to go home.

I closed the place, being the last patient to leave the busy pre-surgical testing area.

I’d kind of expected to hear back from Dr. Marcelli in a day or two, summarizing her findings, but I haven’t as yet. So, tomorrow I think I’ll give her office a call and see if she turned up anything I need to know about.

My assumption, though, is “no news is good news,” so I’m not worried.