A Bag of Onions

Posted by Holly at August 28th, 2009

So a few weeks ago, I was diagnosed with thyroid cancer. Right off the bat, let me say that the surgeon said “we can cure this” as I came out of the anesthetic daze of surgery. (I resisted saying “my” surgeon, although I wrote that first. I’m always amazed at how possessive people are about their health care providers. Maybe that’s one of the reasons people are so worried about what health care coverage reform might mean…they might lose their doctors. Well, no, wait, that would be assuming the fear came out of any rational thought, which it clearly does not or we would not be in this period of total lunacy. But, I digress.),
I did hear her and I was happy but I was way happier that I was coming out of it at all because I am always scared I will have some awful reaction to drugs – as I have before – and not wake up. If you’ve had surgery, the put-you-to-sleep-kind, you know how one second you think you are alert and conscious and suddenly you are waking up in recovery and have missed some significant chunk of time and event in your own life.

The sequence of these events was significant because I knew when my sister and I went to Florida to see our mom on what turned out to be the last visit we had with her and one in which we ended up arranging for home hospice care for her, I knew I was going home to surgery two days later and I couldn’t tell her. I wanted to hear her reassure me and I wanted her to fret about me a little and I wanted to hear her reactions to the follow up because she would have turned it into a drama – My Daughter Has Thyroid Cancer; A Way Much More Important Occurrence Than Anyone I Know In Florida Has Ever Had With Their Children In Their Lives (certainly not true). She was that way and, as much as we tried to help her keep things in perspective, it was always kind of wonderful to have her carry on so over us.

It was a strangely wonderful weekend in which we made her very happy by bringing her home; or, at least, to a place we knew to be her home but which she didn’t immediately recognize except as somewhere so very nice with all of her things in it. She ate half a corned beef sandwich and a bagel that weekend. Let her have whatever she wants, was the advice from the hospice team. We couldn’t do much more harm to her already end-stage congestive heart and we knew she wouldn’t be eating that way frequently, so we all enjoyed fatty, tasty food from The Pastrami King in Ft. Lauderdale.

When we finally had to say goodbye, neither my sister nor I really thought it would be the last time we would see her. We thought we had some months, at least, to go and she was doing so well that no one could have guessed how fast she would go from us. My mother and I did have two chunks of teary, laughy, loving conversations filled with nothing but what a special mother she was to me, how much we loved each other, how she “didn’t want to be going so far away from me”. At that moment, wondering what she meant went icily through my brain: did she mean that she didn’t want me to go home to Oregon? No, she said she didn’t want to be going so far away from me. Did she mean she didn’t want me to go to Singapore, which I was scheduled to do three weeks later for my work? No, she said she didn’t want to be going so far away from me. But, she must have meant my travel and, in her declining mental and physical condition, she just got it wrong.

Or, she got it right and knew perfectly well what was happening in our lives.

Which ever of those truths she meant, all the bad moments of the past were sweetly gone and replaced the way rain leaves us with smooth, clean leaves, glistening blades of grass and a fresh scent in the air.

I still kept thinking that I wanted her to be here to reassure me when I got out of surgery but that was not a worry I was going to give her then. Unless, maybe, I should have so she would have had a reason and purpose to stay here and protect me. She had definitely done that before. When I had an allergic reaction to contrast dye – the very same radioactive iodine involved in thyroid treatment – just before I would have hit that white tunnel of light on the way to somewhere – the vision of how angry my mother would be with me if I died surfaced into my brain. That was worse than death so I didn’t let myself die. You can do that, before it’s your time. I read an obituary not too long ago in which someone who had lived to be over 100 was asked his secret and he said, “When you feel like you’re going to die, don’t.” I understand that.

My mother also jumped into a lake near my Uncle Phil’s house in Massapequa once, when I was old enough to be on a dock with the other kids but not smart enough to know what to do when I slipped in and was hanging between two docks, an arm on each, afraid to let go but about to be dislodged. Never mind her hairdo, or anything else, my mother raced into the water and saved me. I think we both forgot that I actually did know how to swim.

This time, the dreaded the cancer diagnosis would not be shared with my mother, much as I would love to hear her retelling the story to her friends.

This surgery was probably two years later than it should have been. Or, maybe more. Who knows. Two years ago, in April of 2007, I was in New York at my sister’s house and, looking in the mirror one morning, noticed a lump in my throat. I showed it to my sister who reminded me we had thyroid issues in the family – our dad’s mom had goiters and, it turns out, so does my sister – and told me I should see a doctor when I got home. Which I did. Not exactly a doctor, though. A physician’s assistant who did all the routine stuff like well-woman care and pap tests. The doctor herself, it turns out, was busying herself to switch her practice of gynecology to hair removal. No jokes.

I told the PA that I had this lump, which she felt and ordered a thyroid blood test, which came back with a report of normal functioning, no problems. I got that word in a phone call and, even though the little voice was there, I wasn’t smart enough to say, “Wait a second, what about this lump in my throat?” But I didn’t say that.

Fast forward two years, almost to the month; actually, May 2009. One morning something, I don’t know what, made me reach up to touch the lump and it was a little sore. Now why would that be, I wondered. Went to a different doctor and actually saw a doctor – and a physician’s assistant who called me a couple of weeks later after a blood test to say the thyroid was functioning normally, not to worry. This time I said, but what about the lumps in my neck? The doctor had palpated two of them. The doctor called back an hour later to apologize and tell me she hadn’t really read the chart when the results came in.

Next came an ultrasound that confirmed those two lumps on the right and detected a third on the left, a little one. The doctor ordered a needle biopsy because nothing could be concluded from the ultrasound except that there were lumps. Do not contemplate for too long the idea of someone sticking a needle in the middle of your neck. It is a horrible image. It is a big needle, too. Luckily, you are quite deadened to the pain but fully alert and aware. They tell you to try not to swallow and tell you that people always have to swallow more at that point. (I know, why say it, then?).

At the important moment of needle insertion, the assistant said, “Okay, don’t swallow.” So I swallowed. I’m sure I’m not the first or last person to do that and I’ll bet they know it will happen and have really planned their alignment for the next moment.

That, too, was inconclusive enough but, at the same time, revealing enough that there were probable cancerous cells, that surgery was the next step and that is how I came to be gratefully realizing I had made it when I woke up in recovery on June 17th, three weeks later.

Recovery from major, traumatic surgery was quick – out the next day – but not before I got to lie there, still quite foggy for the first few hours but then alert enough to read an entire book: The Guernsey Literary and Potato Peel Society. Okay, it’s a short book, but highly recommendable. At one point, on day two, when a nurse came in and told me I could really get up and sit in a chair if I wanted, my reaction was more – are you kidding me? I’m just going to loll about in this bed and read while people bring things and do things, thank you. Oh, and now there’s room service you can order whenever you want and get good food from an interesting menu.

The worst part was when the drain in my neck had to be removed. The nurse had the hiccups and couldn’t coordinate pulling out the drain in one, swift motion, with the tempo of his hiccups. He had to get help. I was surprised at this six or seven inch tube that had been residing in there. Icky, no more about that.

A little recovery time at home – no pity, I might add but, some wonderful gestures from neighbors – freshly baked apple pie (yum) and a bag of goodies that include cereal, and lovely flowers. I think the one neighbor who brought the pie the afternoon I got home was a little disappointed to find me at my computer.

Next there were a bunch of doctor’s appointment while they figured out when they were going to do what next. They knew what, of course, as there turns out to be only one way to treat this form of thyroid cancer; and that is with radioactive iodine. The question would be when since I had to go to Singapore and work it in so that I wouldn’t be setting off airport alarms half-way around the world. It was comforting that the cancer wasn’t running down the inside of my body from its crook in the neck and everyone thought I could safely go away.

Before surgery, the doctor thought she could take just the right node of the thyroid but ended up taking the whole gland. This changed the picture somewhat as, now, I produce no hormone on my own and will be dependent on synthetic thyroid hormone daily for the rest of my life – the life I’m so grateful to still have. I got started on the hormone pretty quick after surgery with no side effects.

Then my mother died, six days before my Singapore departure. In the scheme of things, we expected to lose her but not so soon and it was hugely shocking in the first moments when my sister called me that Thursday evening. I don’t know what my sister said. Maybe she said nothing but she just cried so I knew. For the few days prior, there had been changes – mom didn’t really want to eat much; she was sleeping when we called so I had, probably, only one conversation with her in the five days before; and, that afternoon at lunch, I did say to Jim that I didn’t think I was ever going to speak to my mother again because she was drifting off. Still, none of us thought she would die that day. Or any other day. Just the way we don’t really think we will die.

Three weeks post-surgery, we were on a plane to New York to my mother’s funeral and a quick turn-around back home with a one-day delay in my departure for Singapore. (That little change in air plans had a fee of $1825 attached to it, way more than the ticket itself, but which will allegedly be removed now that they have proof of the reason for the change.)

Off to Singapore where it is hotter than any other place I have been, including hot and sticky Florida. One of the thyroid functions is to regulate body temperature. By the time I was in Singapore, I was still pretty normal, what with the replacement synthetic and the only time I was really cold was in every single meeting. It was so cold and damp in the conference rooms that pages blew about, my cell phone didn’t always work and one of our delegates ran back to her hotel room to get the robe the hotel provides so she could wear it in the meeting room and warm up. Someone who lives there answered a question about seasons in Singapore by saying there are two – hot and air-conditioned.

The side-effect of being really cold didn’t set in until I was back home and off of the hormone for a couple of weeks. Turns out it has to be out of your body down to a certain percentage and that takes about three weeks. I am sitting here right now wearing several layers and wrapped in a shawl. My body temp is actually 96* F. Jim has used several choice phrases to describe how my body feels when it arrives in bed at night. I’m really looking forward to next Tuesday when I can go back on the replacement hormone and start to warm up.

That’s the target day, next Tuesday, which will be six days post treatment in the form of a radioactive iodine pill delivered to my mouth without touching hands. I’m not sure how it gets into its lead-lined container but that’s how it arrives and is dropped onto the tongue and washed down. But that’s after I heard a couple of variations on what would come next and after I spent some very anxious hours wondering if I would have the same anaphylactic reaction to radioactive iodine I had before – without my mother being in the picture to save me.

The wife of the husband/wife nuclear medicine team was more than reassuring. She did take all the time I wanted to allay my fears and they both told me that, if I had a reaction, I would be the first in their history of several decades. When I told that to my son, knowing me as he does, he immediately said “Uh, oh, that means you’ll have a reaction.” Clearly, I didn’t since I’m sitting here and writing this but I did have an IMMEDIATE light-headed rush and felt my blood pressure soar up right after I swallowed. The doctor said that was just my stress.

I have to say, after we got there and they gave me the consent form and list of instructions, I almost changed my mind and decided to let the cancer be. But, of course, that wasn’t realistic. And the caveats were largely legal protection….

By now, I am highly radioactive so I am typing to with surgical-type vinyl gloves on, which I will be using for four days so as to keep the surfaces with which I come into contact free of radioactive contamination. In spite of what I was told by the husband of the nuclear medical team – who seems a little more vague about everything – Mrs. Dr. gave me the real directions: no sleeping in the same bed with my husband until Monday night; flush three times (each time); use separate dishes, save other waste (not icky poopy waste, though) like the salad I couldn’t finish last night in a plastic bag in the garage for 90 days and then take it to the hospital for nuclear waste disposal; no pets on my lap who might lick me; be six feet apart from Jim when we’re in the house together for a few days – almost impossible – save up clothes and linens to wash later and separately.

There are only two possible side-effects that I will notice (in addition to the awful ones I won’t experience, like death): a sore throat from the inflamed and dying remaining cancer cells and, maybe some tightness and dryness in my throat. And no kisses.

And if I did experience that particular death side-effect, I wonder if I would have to be saved in the garage for 90 days and then delivered to the hospital for disposal as nuclear waste, which would, at least, have the salutary effect of solving whether I will be buried in the Jewish cemetery at home in New York or the Catholic one here in Cornelius near Jim; or, be somehow divided.

But all this will last only until Monday. I sleep downstairs on the couch (on linens which will have to be washed three times following my use) and watch old movies. Last night was Ida Lupino night on AMC. I never knew she hadn’t ever gotten one Academy Award nomination. Don’t think she should have for “High Sierra” with Humphrey Bogart, the second movie; but, in the first one, “Ladies In Retirement”, she played a creepy/sweet murderess who goes off into the twilight toward some undetermined end and surely she should have been nominated for that. Can hardly wait for tonight’s featured actor or actress. I like the word actress and still want to be one so I’m not going to begin using the gender-neutral actor to describe both.

Late yesterday I constructed tin foil rays to wear that probably make me look more like one of those people on the street with tin-foil helmets who claim to receive guidance from somewhere like the Planet Zinnia. They do seem to be none the worse for wear whenever I’ve seen them – the people, not the tin-foil helmets – but I hardly mean to denigrate the sorrowful state of their tender emotions and am only commenting that they might not know in what state they are – physically or emotionally. Nor do I mean to be so glib about having cancer as it is a terrifying thing to hear but, on the other hand, I am so far luckier than most people with this dreaded disease and feel a little like a fraud because I do not feel sick, do not act sick, am not really sick. When my late husband was dying of malignant melanoma, I did comment to someone after I had heard yet another hopeful story of good news about recovering from cancer that you would think no one ever died from the disease, understanding that people were trying to give me hope but also feeling like I couldn’t say how scared I was. This is different. People do live long and healthy lives after this particular diagnosis and, maybe, even live to laugh another day. Maybe someone will see this and chuckle.

So I was particularly delighted when my youngest bonus daughter suggested the title for what she knew I would write and I am happy to praise her brilliance – surely no other step-mother, wicked or otherwise, has bonus children as beautiful, smart, funny as mine (thanks, Mom, for showing me how parental praise works). Thank you, Nina….

I will have a full body scan on Sept. 8th to determine that they got all the thyroid tissue. I’m hoping they find none and – also – hoping they find nothing else of a worrisome nature because I am, after all, my mother’s child, highly dramatic in my own right, and can hardly leave well enough alone before I’m off to the next possible dilemma.