Into the Maw of the Beast

This week, I became a sick person. Not only intellectually and in the abstract, knowing I have cancer. But for real. Now I *feel* like a sick person. That’s because I had my first dose of chemo.

My son Todd came down to Pittsboro to drive me to my first chemo appointment. It was good that he did, because I was a little lightheaded. And it was just good to have his company, as I faced this big first step…..

I had been fasting for 62 hours already by the time he picked me up—water only—as a way of putting my healthy cells into a kind of semi-dormant, nutrient-starved condition so that they would take up less of the chemo agents. Apparently cancer cells are not that smart. They just replicate like crazy no matter what the internal environment they experience, so they were not likely to be put into hibernation, and they would happily gobble up the chemo agents—then find themselves poisoned by it. All of this is based on research done by a couple of biologist/MD types at the University of California. It’s not just some half-baked idea that some goof-ball somewhere came up with. So I decided to give it a try. It was, as you can imagine, very hard to do. And it made me light-headed. So I was grateful that Todd was able to come and get me for my chemo.

We stopped along the way to buy flowers. I wanted to thank my team at the hospital for bearing with me and helping me to get this far in the process—so far as actually starting treatment now. And I wanted to thank my friend Julian, at the hospital. He has put in hours and hours and hours of his time talking me through this via email, arguing with me, coaxing me, informing me, encouraging me….So I got chocolate bars for each, flowers for each, and wrote a thank-you note for each. My first order of business, when I got to the hospital, was to deliver those messages of thanks.

Then it was time to register as a patient and begin the whole process. To walk in the door and become, truly, a cancer patient. My friend Elaine, who is herself a 10-year cancer-free survivor of this exact kind of cancer, took over at this point. Todd handed me over to her care and went on to handle business he needed to tend to in Durham. (There are no sick days for the self-employed. There is only work missed.)

Elaine and I had a lot of time to visit over the next several hours. She is one of the most non-depressing people you’ll ever meet, so it was good to have her alongside me for this maiden voyage into Cancer Treatment Land.

She came loaded for just about any eventuality! Including having a variety of yummy snacks for me to munch on. So I had to tell her what I was doing, with the fasting thing. She thought I was nuts and did not entirely approve, but I told her I wanted someone to know, just in case something went belly-up and the health care team needed to know everything about my health status. So she munched on her carrot sticks and her grapes and ate her graham crackers and shot me occasional disapproving looks, and I tried not to salivate.

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The outpatient hospital experience is one of “hurry up and wait,” and we did a lot of that on Monday. Our first reprieve from this was the check-in with my oncologist, who answered my remaining questions. He was interested to see Elaine there with me – a new face, for him. And knowing that she is a 10-year survivor of IBC. Since he and Elaine are both Jewish and he is brand new to this area, I think they did a bit of quick schmoozing after the appointment, too. Meeting new people, making new friends….

I tape recorded our conversation, as I do all of my consults. But I don’t remember much of what was said. Many of my questions had receded into the background. I was focused, at that point, on just getting on with it. I do remember he said that there is about a 1% chance that taking Cytoxan will give me a secondary cancer. Other than that, I don’t recall much.

He told me that my doses of the chemo agents will be the standard dose per square meter of my body. I find this an odd way to calculate dosages, but that’s how it’s done. There was a brief consultation with his nurse, who pointed out that I’ve lost about 23-25 lbs. since my diagnosis, and they were wondering if I was at a point where they needed to be concerned—but they decided against it. Apparently you’re not supposed to lose more than 10% of your original weight, or it’s considered a bad thing. During chemo, weight loss is *not* your goal. Maintaining your weight and being healthy is the goal. So here I am, for once in my life I should be able to feel good about being heavy, and I’m having a hard time grabbing for the gusto! Go figure!

After meeting with the oncologist, we found ourselves waiting in a small area with another woman who Elaine figured out had also just been diagnosed with IBC. Unlike me, she was not having chemo and etc., because her IBC has been caught later. It’s already metastasized to her lungs and her brain. She’s being treated, but not with as aggressive a treatment regimen as I am facing. I think it’s because there’s less hope for a positive outcome for her and they have to try to get the mets (metastases) under control before they can attack the main cancer. I felt really bad for her and told her about the Stage IV people I’d been corresponding with on the IBC listserv who had gone into long-term remission. It can be done, I told her. And I reached out to take her hand.

Elaine, meanwhile, leaped into action with her lotion and began showing her how to do massage strokes on her arm that are designed to decrease lymphedema after mastectomy. She’d already showed me how to do it, and now she was showing everyone in the waiting area how to do this gentle little stroke that helps control potential complications from mastectomy surgery. She even reached out and grabbed the hand of this woman’s husband and said, “See, like this. Gentle little strokes.” He had been sitting there impassively. Hardly acknowledging anyone else’s presence. But Elaine would not allow him to sit in his fear and silence…she drew him out, even if it was just for a moment. She made sure he was included.

One of the other women in the waiting area looked like she was a cancer patient, too. She was bloated and large—looked like she might be on heavy steroids to control the side effects of her chemo. But it turns out that she is a kidney dialysis patient and was there to give support and comfort to someone else who was the actual patient.

Sometimes you get hauled up short, in your myopic self-misery. This was one of those times.

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The process of getting infused for the first time was interesting. Not painful or scary at all.

Accessing the port is a big deal. They treat it as if it’s a significant little surgery. The gloves the nurses use are not the big-box plastic gloves that everyone puts on when they draw your blood or palpate a swollen lymph node or something. No. These gloves are a special, sterile pair that they open up and use just to make the access to your port. Sterile conditions absolutely prevail. I suppose because when they insert that honkin’ needle into the port, they really are mainlining your bloodstream. Sterile is necessary.

Then we started infusion. First IV saline to hydrate me, then some oral anti-nausea meds. I’m told that they also used IV anti-nausea meds, but don’t recall them telling me they were doing this. Then the Adriamycin came out. Two big, fat syringes of translucent red liquid. I was pleased to note that the nurse administering it into my port line did *not* wear a biohazard suit! She was obviously taking precautions, but it wasn’t quite as daunting a spectacle as I had thought it might be.

As she sat there and manually pushed the drug into my heart, I could feel my head start to itch, as if I had a thousand lice all eating away at the roots of my hair. “Well, so much for putting healthy cells in stasis by fasting and possibly getting to keep my hair as a result!” I thought. “It’s gonna go.”

During this time, I had a chance to talk to a hospital pharmacist about the chemo agents I was receiving. He handed me a big stack of papers and info to read. He was a nice guy, but I informed him sweetly that he was really about three weeks too late with this. While it might work for most people to be “consented” at the last minute like this, I pointed out, from the beginning I had needed a great deal of information and early on. I had asked for it, I said, but I had not received it. Instead, I had been forced to do my own research to find out more about the drugs they were giving me. I said it would have been wonderful to be able to sit down and talk with him long ago. In fact, I said, it should have been offered to me just like it was offered to me to sit down and talk with the nutritionist.

He agreed that it would have been nice. Apparently the fact that he is able to sit down with chemo patients and talk to them *at all* is a big deal. It has required special funding, a grant program, etc., just to allow him to make direct patient contact. We agreed that this is stupid. I told him that our conversations three weeks ago would not have been pleasant ones, that I was very upset and concerned about what they are pumping into me. But, I said, it would have meant a lot to me to have someone who was willing to sit down and talk with me about those issues at the time, rather than my having to research it on my own, cope with it on my own…. He agreed that he wished his service would be offered more up-front to patients, but he offered to address any questions I had now.

Of course, at this point, I didn’t have many left. We talked about toxicity. About short-term and long-term side-effects of the chemo. About probabilities. And we talked about hair loss.

Come to find out, as my head was itching like crazy, just because I may lose my hair and my eyebrows may fall out, I may not lose the hair on my legs or in my armpits…meaning that I’ll still have to shave. An even greater indignity is that the three moustache hairs and four beard hairs I have developed post-menopause may also not go away! I informed him that my order is for uniform hair loss on legs, pits and around my mouth, if I have to have hair loss. He just laughed and said he’d do what he could, but doubted he’d have much pull. What hair a patient loses and where they lose it from is pretty individual.

The good news is that after several minutes of “lice in the hair” feeling, that faded. But a little later I felt a long, drawn-out, dull pain radiating from my sternum up the right side of my throat. Then that left and the pins and needles started in my feet and some in my hands. I could see where I was going to have most of my side-effects, almost immediately. The one I did not see coming, however, was the nausea. For the moment, I was protected.

The Cytoxan was hung in a little bag from my IV pole, after the Adriamycin had been administered. And then I was given some IV fluids again to hydrate me some more…and I was set free to go home.

By this time Elaine was needing to leave—it was about 6:00 p.m. But my friend Judith had made arrangements to pick me up at the hospital post-chemo and drive me back to my house, then spend the night with me just to be there in case I needed something. So back we went to Pittsboro, with me calling my folks and Todd to let them know I’d survived the first round.

I was still fasting, at this time. You’re supposed to fast for 24 hours post-chemo, before you eat and wake up your healthy cells again with a nutrient-rich environment. And I was pretty buzzed. I don’t know if it was because of something they gave me in an IV or just because of the chemo and the fasting—but I had a definite buzz on. I was glad Judith was driving!

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I had all kinds of plans for what Judith and I could accomplish while she spent the evening with me. Computer work and such things, movies….

But it all went by the wayside when about an hour and a half after the end of chemo I detected the first niggling bits of nausea creeping in. I hit the three different kinds of oral anti-nausea meds and promptly fell asleep in my rocking chair in front of the TV. Judith just hung out and chilled, keeping a watchful eye on me, expecting nothing for herself. I would wake up at times during the night, walk around and get a drink, take more anti-nausea pills, count the hours until I could eat, fall into a profound sleep again, Judith would tiptoe out of the guest bedroom to check on me…..

The next morning I realized how incredibly insightful Judith had been, to realize that just her presence would be so important for me. Although she didn’t *do* a whole lot, her presence was powerfully comforting. Just knowing that I was not alone, if I needed something, was worth more than words can say. Thank God for Judith.

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Judith had to go home early the next morning, because she shares a car with her daughter, who needed it to go to work. But that was OK. By then, I knew that I would be OK. In the light of day, the nausea is not as daunting. It is a demon I can manage on my own, if necessary. So Judith left. In her place came my new daughter-in-law, Michelle. (Note to self: Must remember to thank Todd one more time for choosing so well!)

I was so convinced that this fasting thing was going to help me scoot through chemo with few side effects that I had refused to buy the $100 (my co-pay share) Neulasta shot that I was supposed to take 24 hours after finishing chemo. (Actual cost of the shot is $4,000 per injection! Insurance picked up the vast bulk of this cost.) I figured we should just wait and see if I needed it, because $100 a shot is too rich for my blood! But my team had convinced me that by then it would too late. If I got debilitated because of a low white cell count, it would cost more and be harder to treat than if I just tried to prevent the problem to start with.

So I needed to go to the pharmacy to pick up that shot, but I also knew that there was no way I could drive myself. And in the meantime, the lead chemo nurse on my team had called to see how I was doing. When I told her about how much trouble I was having with the nausea, she prescribed another oral anti-nausea drug for me. So I doubly needed to go to the pharmacy. Michelle, bless her, was here nice and early to take me into town and help me get the money for the prescriptions, pick them up…and take some trash to recycling. It was clear that there was at least a possibility that she would be late for work because of this, but she knew it needed to be done, and she stepped up to the plate to do this for me. (Did I mention how lucky I am in having gained such a person into my family right before a time like this? I feel guilty for putting her through this so early in her marriage to my son, but sometimes that’s the curve that life throws you….)

More than the drug run, though, was just the opportunity to spend some time together. We talked about jobs and family and men and money….you know. The usual things. She’s volunteered to come spend the night with me some day if I need it, and I probably will after another chemo dose. It will be good.

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What can I say about the ensuing days? The side effects from the chemo kept me from work on Tuesday and for most of the day on Wednesday. I was supposed to meet a co-worker for lunch on Wednesday and just about missed her, I was so late. You sit down to let another wave of nausea pass, and before you know it you’ve dozed an hour away!

I was at work on Thursday and Friday, but I just can’t work full days now. I still battle nausea, and I get very tired very easily. I work as hard as I can, and I focus each day on one work task that I need to get accomplished that day, if possible. Then I note my accomplishments, so that I can remind myself that I am being productive, no matter how crappy I may be feeling.

And “crappy” is my new norm. There’s “good crappy” and “bad crappy.” But usually there’s an element of “crappy” in there somewhere.

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I did get to Target one day to buy a couple of hats and a few scarves to tie around my head. This will clearly be an on-going adventure.

I found a young gal behind the counter with a name tag saying “Jamayra.” She helped me pick some scarves, gave me some tying ideas, confessed that she wore a wig a lot of the time and recommended I get one, too. Then she explained why she wears a wig: She has MS.

I didn’t inquire deeply, but at once we had a bond. She was a young black gal, struggling to make a living while dealing with a serious health condition. I am a middle-aged (OK…later middle aged) white gal, struggling to make a living while dealing with a serious health condition. She is further down this road than I am, and she has wisdom to share. She told me that her real name is not Jamayra, but something far more ordinary. She told me to ask for her if I came back in again and needed more help.

Again, sometimes you get confronted with your own myopic self-pity in surprising ways.

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Which brings me to the subject of suffering. It’s a subject that I’ve spent a lot of time thinking about over the last couple of years. The justice of God—theodicy. Why does a just and benevolent God allow suffering? Why is there so much suffering in the world? Why is Nature red in tooth and claw?

I had all these questions big-time before I got cancer. I have them now no less than before. But somehow, now, it seems as if something is shifting. I can’t quite tell you why, but it does seem different. Just a little bit.

Before I had cancer, I would look at the puffy woman undergoing dialysis and think, “Poor soul! How wrong it is for her to have to suffer like that! What a pity that she has to go through this! I don’t know where a just God is, but how can anything be right, for her to have to suffer so?”

Before I had cancer, I would look at the cute young black chick behind the counter at Target and, if I knew she was facing such a life challenge as having MS, I would think, “Poor thing! So young! And to be faced with such a challenge.. I don’t know where a just God is, at a time like this, but how can it be right for her to have to suffer so? Doesn’t she have enough to struggle with, just being young and black in this society? Why MS too?”

And now. Now that I have cancer, I look at these people and I find myself thinking, “Oh, I know you. I understand.” There is more empathy than pity. More holding these people in my heart for just a second, and just being there with them in what they are experiencing, than there is that flash of outrage that they are having to suffer at all.

Maybe it’s our common suffering that binds us into a human body, a race, a species? Maybe that is the gift of suffering—its ability to bind us together, if we will let it, in ways that shared joys, wonderful as they are, cannot do? Maybe suffering is what really, in the end, opens our hearts permanently and certainly to each other, if we will let it.

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I reached my nadir on Saturday—the point post-chemo at which my white blood cell count, and my ability to fight off infection, is lowest. How do I know?

Well, that suspicious spot that the PET scan found on my non-existent tonsil? It would appear that it is indeed a remnant of tonsil material that was not removed 50 years ago and that it is indeed slightly infected. On Saturday that little sucker mushroomed up into a full-fledged ear ache/sore throat. No cancer metastasis would act like that, but an occult infection that has suddenly had the brakes released (via suppression of my white cell count) would behave exactly in this way. Fortunately, my friend Tom was available to give me some healing Reiki energy. I gulped a bunch of Vitamin C. And it is now down to manageable size again.

Really must get that looked at. Don’t fancy enjoying that every two weeks for the next four months!

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“Who do you live with?”

I heard this question over and over again in the days following my diagnosis. My living arrangements were suddenly a concern to everyone…yet no one made many comments when I confessed that my housemates were two cats and two dogs, and that I had only a few weeks earlier had to put down two other beloved dogs. I could see them all shaking their heads, knowing how much more difficult will be the struggle I face, living alone.

But I swear…sometimes I think I can hear it now. The shuffle of feet in the background, moving as I move, turning left, turning right, now stopping and resting—depending on what moves I make. Kind of like the little guy in the coveralls in the Verizon commercials, who is the lead guy in this whole big network of people that keeps the Verizon customer connected to the people he needs in his life.

There’s Ernie, the bulwark.
Cathy, the rock and medical stalwart.
Alice, the personnel connector and wig-buyer.
Peggy the wig stylist.
Tom the Reiki master and general friend indeed.
Joanie the recipe scout.
Jill and Joanie and Alice, the Tofutti sleuths.
Nancy the gatekeeper of life-saving information.
Elaine the jester and cheering section and source of hope for good endings.
Lee the quiet hand-holder.
Marianne, the medicine woman, and her son Xander, the drafted but affable strong back.
There are Darlyne, Mike and Berna, the trekkers who come all the way out just to spend 30 minutes being with me as I digest the news that I might die.
There’s Mike, who called just to cry with me when he heard the news.
There’s David, who keeps showering me with cards so that I can never forget I’m remembered.
There’s Julian, who says, “Talk to me.” And who talks a lot, in return.
There’s Nora and Jim and Melissa, who leaped into the fray with dozens of leads for me to check out, sure that each one can restore me to perfect health.
Paulette, the master chef who will help me find new favorites and make them for me.
Judith, the web mistress, PayPal Poo-bah and quiet sitter, willing to do nothing more than just be here for me at a key moment when I didn’t even realize how valuable it would be to have someone nearby.
Ashley, the juicing queen who showed me that rainbow chard, beets, carrots, ginger, blueberries, blackberries and raisins are actually rather *good*! (I mean, seriously….who’d a thunk it?)
Joe and Marsha, who were quick to say “Let’s have lunch” when they heard the news, and who have contributed web management and musical gifts to boot.
Cousin Gayle, who I never hear from, reaching out to say, “Call me” and helping me find things to laugh at. She has always been so good with humor!
Cousin Debbie, who reminded me that things could always be worse: she could be here with me!  But who also shared the story of a very difficult time in her own life, and I knew that she knows something of what I’m going through.
Cousin-in-law Heather, who chimes in with “atta’ girls” and reminders that I am in everyone’s prayers. (Always a good thing to remember to appreciate!)
My son Graham and his friends, trying to find ways to help me raise money to meet expenses. God bless those heavy metal guys! 
My son Todd and my new daughter-in-law, Michelle. I clearly got the best part of that bargain! 
My parents, helping materially and psychologically in whatever ways they can. Listening to me rant and cry, taking my burdens upon themselves and dissipating the blows as best they can, even in their old age.
Myrna, willing to take time to come out and help.
My brother and his wife, whom I so seldom hear from…reaching out, too. So good to hear from folks I’ve lost much touch with. This is nice. It really pleases me.
Rick and Tracy and Lynn and Dennis – neighbors of the first order, lovers of animals, and so ready and willing to help me protect mine as I go through all of this.
Susan and Bill, whose happening to have toilet paper in the trunk of their car – yes! toilet paper! – saved the day this weekend.

Kind of gives the lie to “just two cats and two dogs,” doesn’t it?