Monday, December 12, 2005

December 2, 2005 - Diagnosis

Today, nearly a month after the first appointment with Dr. Lerner, Claire and I are again sitting in his waiting room. I am feeling less fear today, than a sort of focused intensity. It is almost a feeling of relief. The waiting is nearly over. This will surely be the day – the day we find out for sure.

I am called out of the waiting room first, to undergo the ritual bloodletting. I understand, from some of the patient memoirs I have read, that the drawing of blood is the routine first step before each consultation with the oncologist. I submit to the needle, and am thankful to feel little pain. I have years of experience as a blood donor, not to mention routine diagnostic blood tests for Dr. Cheli’s annual checkups). If the diagnosis is indeed cancer – as we’ve been reluctantly assuming it will be, based on what Dr. Lerner told us at the last visit – these blood draws will become second nature to me.

I go from the bloodletting room into an examining room, and Claire is called in to meet me there. Moments later, a nurse hands me a sheet of paper with my blood work results. Dr. Lerner and his partners have wonderful, high-tech equipment in their office that renders nearly instantaneous results – no waiting, for a hematologist’s patients. Looking the paper over, Claire and I can identify only a few of the abbreviations: "Hgb" for hemoglobin, "WBC" for white blood-cell count, "Plt" for platelets. The rest could just as well be hieroglyphics to us. We have no way of knowing whether the numbers associated with these abbreviations are within normal ranges.

It’s ironic that am holding in my hands this sheet of paper that contains the most intimate details of the inner workings of my body, but I haven’t the slightest idea what it says. These medical professionals in the office, who know so little of the inner workings of my heart in the spiritual sense, know far more than I do about the functioning of the heart muscle, and the blood it continually pumps throughout my body.

When Dr. Lerner comes in, he is as clear and matter-of-fact in his presentation as the last time. While the news he tells us is not said without kindness, it is hard news – probably the hardest news doctors must ever tell their patients.

Yes, he confirms, it is cancer. Non-Hodkins Lymphoma, of the B-cell variety. Follicular center cell. Such terms make little sense to me, but I scribble furiously on the pad I’ve brought with me for just this purpose. I’m aware that Claire is quietly crying beside me, but I continue to write, asking questions to clarify. I remember thinking to myself that maybe I ought to be crying too – for, after all, I’m the patient. But no. I am too busy to cry. These words Dr. Lerner is saying are important, and I need to record them (even though I barely understand their meaning). I know I will be surfing the Internet’s medical district that evening, to research the full implications of what the good doctor is saying.

My cancer is indolent, or slow-moving. "Indolent" means lazy. This foe of mine is lazy, lackadaisical, a true deadbeat of the cancer world. I confirm with Dr. Lerner something I have earlier read on one of those websites: that while the aggressive forms of NHL may be more immediately dangerous, they can often be cured; but that the indolent forms are basically incurable, and can only be put into remission. Yes, that is correct, Dr. Lerner assures me, in even tones. My disease is incurable. But the remissions are often long, he tells me, many years in duration. There is every reason to expect that, with treatment, I can have a great many good years ahead.

The conversation continues to unfold. We move on to the subject of treatment. "Let’s get you through the holidays," Dr. Lerner is saying. "We can begin chemotherapy in mid-January." He describes the type of chemo I will be receiving: a tripleheader cocktail known by the acronym of CHOP (three chemotherapy medicines, plus prednisone). Along with it will be Rituxan – a name I recognize from my medical webcrawling. Rituxan is a modern wonder, a genetically-engineered antibody treatment that goes directly after the particular form of cancer cells I have. It’s good news, he says, that I have this particular type of cancer, because Rituxan plus chemotherapy is a potent combination, bringing about remission in a large percentage of patients.

I will be getting a porta-cath, he tells me. I know what those are. I’ve seen them in patients I’ve visited. It’s an artificial device, implanted in the skin up near the collarbone, allowing medication to be mainlined into a major artery. Porta-caths are a kindness to patients who must receive repeated IV drips. They keep the arms from being battered and bruised by needle punctures, and they help patients avoid the burning sensation that’s a side-effect of some chemotherapy drugs. Dr. Lerner assures me that I can go around with this thing implanted in my body, and continue with all my normal activities. With this latest variety of porta-cath, he tells me, I could even go swimming if I want to (I find this hard to imagine, based on other such devices I have seen, but maybe this one is somehow different).

I’ve been wondering about how to bring up the subject of a second opinion, but Dr. Lerner does it for me. A second opinion is a good thing, he tells us. (I’m glad he brought it up, for this could be a matter of some delicacy – I’d been wondering if he’d conclude that we don’t trust him. But no, he reassures me – saying "two heads are better than one" when it comes to cancer treatment decisions.) I tell him that, yes, I would like to get a second opinion concerning treatment, and then I ask him for some recommendations. Rather than giving me specific doctors’ names, Dr. Lerner mentions the major cancer centers round about: Fox Chase in Philadelphia, New Jersey Cancer Institute in New Brunswick, Hackensack Hospital – and in New York City, Memorial Sloan-Kettering and Cornell. It’s quite a list, reflecting the embarrassment of riches we have in this area for treatment of this disease. He gives no further recommendation, saying it’s my choice which one – if any – to contact.

I sense that this is a rule of the game. This is as far as he’ll go, and no further. The next step is up to us. Dr. Lerner will be happy to work with a second-opinion doctor, but it’s up to us to find such a person.

Fair enough. We can do that. But how do we decide where to go? And, more to the point, what do we do if the second-opinion doctor disagrees with Dr. Lerner as to the course of treatment? How on earth do we, lacking a medical-school education, decide between a couple of dueling oncologists? That’s a question for another day, and one I hope we will never have to deal with. But I do know I want that second opinion, and tell Dr. Lerner so.

More tests are ahead, he tells us: first, a mugascan (a sort of x-ray of the heart, to make sure there are no abnormalities that could interfere with chemotherapy). And then – the news I have been vaguely dreading – a bone-marrow biopsy. I’ve heard about those, about how uncomfortable they can be. I press Dr. Lerner for some details. He refuses to sugar-coat it: this test is uncomfortable (he stops short of using the word "pain," I notice). He says can numb the surface of the skin with novocaine, but there’s no way he can numb the underlying bone. He will perform the procedure himself, right in the office. He’ll make it quick. Well, "quick" is some small comfort, I suppose.

The mugascan prescription is duly inscribed, the bone-marrow biopsy appointment duly made, and we make our way back out into the waiting room. Sitting there, as we exit, is Cindy, a member of our church. She informs us she’s brought her eighteen-year-old daughter to see one of the doctors in the group (I’d visited her daughter a couple weeks before in the hospital, as she was being treated for a mysterious, low-platelet-level blood problem).

And what am I doing here, she asks, with a tone of concern? Here we go. This is the first person we have to tell.

I’ve just received life-changing news, I inform her. I’ve been diagnosed with lymphoma.

I’m so sorry, says Cindy. Yes, I say, so am I. Life is going to be very different. We thank her for her concern, wish her daughter well, then pull on our coats and leave the building.

On the way out to the car, Claire asks whether I was sure I did the right thing in telling Cindy the news. It’s Friday, I say to her. Tonight we tell the kids, and after that we start phoning relatives. On Sunday, we tell the whole congregation, and after that the whole world can know. It really doesn’t matter now. I’ve resolved to be very open about my condition, I remind her. No more secrets. There’s something oddly liberating in that.

We sit together in the car for a few minutes, holding hands. I tell Claire I’ve been feeling very close to her through this ordeal. I thank her for being there for me. We confess to one another how frightened we both feel. But there is love there, too – more love than I could have imagined I would feel, in such circumstances. Such love is a lantern in a dark time.

I take out my cell phone and call our son Benjamin (who’s living, this year, in a rental house with a few friends, while attending Monmouth University). Come home tonight, we tell him. We’ve got to have a family meeting. We can’t explain why. Just come. He makes a few feeble attempts to question us further on the reason for the meeting, but then he agrees. We drive home.

An hour or so later, Ben shows up. Ania is already there; she has made plans to go out with friends this evening, but we ask her to cancel. We sit at the kitchen table, and I come right out with it (what else could I do?). I’ve been diagnosed with Non-Hodgkins Lymphoma, I tell them. It is a form of cancer. It’s highly treatable, but the treatment is difficult. There is no cure, but there is the prospect of long remissions, if the treatment succeeds.

Ania sits quietly, looking like she’s seen a ghost. She has, I think to myself. The ghost is me. Ben expresses a bit more emotion, appropriately commiserating about the unfairness of it all, and asking some good, pertinent questions.

I phone Bill, our presbytery executive (he fills a position roughly comparable to that of bishop in some other denominations, but is also a sort of pastor to the pastors). Bill and I had prearranged this call. I had taken him into my confidence a couple of weeks before, so he could be prepared for the worst. I had outlined to him at the time my resolve to be completely open about this, once we had a firm diagnosis – fully informing the congregation at the earliest opportunity. He had asked me to call him, once I knew. I do so, and feel strengthened by his support and understanding.

A little later I get on the phone, and call my brothers: Jim in Boston, Dave in San Francisco. I repeat the same procedure we followed with Ben and Ania. No easy way to say this: it’s cancer, it’s treatable, etc., etc. They respnd with shock, and with expressions of support. By now it’s too late to call our mother, in her retirement community in Chapel Hill, North Carolina. Tomorrow is another day.


Cindy Popiel said...

First of all, you have to know how supportive you and Robin both were for me 2 years ago when I had my health scare. Like you, when I was in the "diagnosis" stage, my mind went awry. I thought out EVERY aspect of my life and wondered the same things about my, missing the kids grow etc. I too wrote a journal during that very difficult time. However, until now, no one even knows about it. I wanted something to be here after I was gone so Ashton and Travis knew how much they meant to me. As I read your journal, I sit here and cry, because I KNOW EXACTLY what is going through your mind.

I didn't tell anyone for some time. I kept it all to myself hoping it would go away. And, I was one of those people who couldn't say the "C" word. It literally got caught in my throat. Once my husband was told, the hardest thing to do next was tell my kids.

Secondly, you and Ashton have a few things in common. She's taking Rituxan for her platelet disorder and I think you may know because you visited her in the hospital, that she too had a bone marrow biopsy done. If you want to know what it feels like, give her a call.

Lastly, you must know that you have the most support, physically, mentally, emotionally and spiritually than anyone around. Ashton and I think about you often and praying is a great comfort to me.

Take care,

Kristin said...

I have to admit this one made me almost cry too. Telling family was so difficult for me, with me being in NYC and my parents and sisters on the West Coast, my first medical issues were not even told to them by me, I couldn't even speak I cried so much. I allowed the Dr's to call my parents and tell them about my stroke and 'potential' ms diagnosis' Later on I moved to a method of typing letters to my parents to let them know. I get so upset thinking of the diseases/conditions I've dealt/deal with and have a hard time talking at all about them without getting really choked up. I'm so glad that Claire has been by your side at so many of these appointments, I went and still often go by myself and I often cry in the waiting room or skip appointments if I feel too upset by it. Anyway, journals help me a lot too. They still do with whatever issues I'm dealing with. (including all the new baby stuff!!)