Getting better all the time

I just managed to run a whole mile.  Very slowly, but I did it. This hasn’t happened in months.  I couldn’t do it last week.  Couldn’t do it two days ago.  So I continue to get better.

                I hadn’t realized how messed up my brain truly was until I started feeling better.  “Chemo fog” is an understatement. There are big gaps in my memory, especially from last spring. Whole conversations that I apparently had are gone. There were church committee meetings that I myself led, and I can’t remember what we did or said. Now, that is embarrassing.

                Have you been in your kitchen when a light bulb has blown out in your fixture, but you don’t notice for a while? And suddenly it occurs to you, boy, it’s dim in here. Well, it has been dim like that in my own mind. But slowly the gray cells are coming back online, and I’m feeling slightly less out of it as time goes by.

                It’s been hard to multitask at all, to hold too many threads of information at once. It’s like how my old PC grinds down to a halt when I have too many windows open, and there isn’t enough CPU to go around. Some information goes to the wrong place. Some just gets lost.

                Under normal circumstances, I like to paint and draw and do glass lampwork. For a while there, I stopped doing all of this, completely. I couldn’t think that hard. (Side note:  it was interesting to learn that I think hard when I do art; artist friends of mine say they stop thinking actively at all.) Anyway, a couple months ago, I started drawing again. But I could only handle pencil or pen, strictly black-and-white. I could not keep too many categories in my head at once. I could handle value, and line, and general design, but not color.  Too much to process. But a few weeks ago, suddenly I could cope with color, as well. I have yet to sit down at my torch and try the glass, but I look forward to that day.

From my recent black-and-white period.

from last week

Cancer-free, with an asterisk

                Hello! I’m still basking in the glow of yesterday’s good news. In the afternoon, my son Sean’s soccer team, the Sandy Spring Friends School men’s varsity Wildebeests, won their league tournament championship in a too-exciting game against their archrivals, Washington International School. It was sweet.  There was, in particular, one very lovely goal.  The November sun was shining on the fall foliage. Nobody got seriously hurt.

                Earlier in the day, I had my LAST miserable radiation treatment…YAY! They said the burns were likely to get worse for about three days, and then they would start getting better.  I am ready for that. Also, I am ready to have three hours a day of my life back! What will I do?  I will paint!  I may finish the laundry! They actually have a support group for people who need help figuring out what to do now that daily treatment is over.  I told them I didn’t think I was going to have a problem with that.

                The best part of yesterday, for me, though, was my radiation oncologist laying out what she thinks my prognosis is.  It turns out, it is very good.

                I was prepared for not-good news from her. About two weeks ago, I had asked her when I could have the “Katie beat cancer” party.

                “Are you asking me when we are going to say ‘You’re cured?’” she asked.

                “Yes, I guess I am.”

                “We’re not.”

                “Not now, or not ever?”

                “Not ever.”

                Damn.

                She told me, flatly, that I was never going to hear the word “cured” and I should get my head around that. Once cancer goes as far as mine had, spreading to a bunch of lymph nodes, you can never be sure you’ve killed every last cancer cell. This is going to be a lifelong project. We just hope it is more like a chronic illness in the background than an active crisis. She said, basically, my kids can declare my final victory over cancer when I’m 90 years old and I die of something else.

                To use a tired military analogy, this is not like fighting the Civil War, where at the end of the day someone signs the surrender papers and hands over his sword and it’s finished. It’s more like fighting Al Qaeda, where you only know if you’re winning when, over time, nothing blows up in your face. You never assume it’s over, because you just never know.

                So I am sitting there looking distressed, apparently, and trying to digest that she had just told me this was NEVER going to end. Damn. And then she asks if I want to hear the good news.

                Yes.  Yes, I did.

                The really good news, she said, is that I was already in remission. I asked what that meant, exactly, and she said it means that as of right now, they have poisoned or bodily removed every cancer cell they can find. That means I can currently say I’m “cancer-free.” This does not mean cancer won’t blow up in my face in the future, but it means right now, I’m healthy, as far as anyone knows.

                This is another example of how the English language doesn’t stretch quite far enough to cover certain scientific truths. All we can talk about is probabilities and risk, and we aren’t good at doing that with any precision or clarity. Right now, I am not cured, but I am not sick. I will “have cancer” the rest of my life, but simultaneously, I can be “cancer-free.”

                (I am worried about people misunderstanding that distinction. My kids are, this morning, excitedly announcing on Facebook that I am “cancer-free” and counting the “likes” this gets. This has been a gratifyingly large number. But, although it is true to call me “cancer-free,” it is also misleading.  I have explained the difference to my kids between “cancer-free” and “cured,” and they get it. Even Matthew, who does not handle uncertainty very well, seems to get it. But other people are clearly assuming this means I am cured, it’s over, and we move on, and that is just not true.)

                It took me more than a week to process what my doctor had said. I could not tell even how I felt about it. So I convened what I think my Quaker friends would call a “clearness committee.” I needed a reality check. So I consulted two of my dearest friends, Sharon and Pam, and also my mom. I ran it past them. I told them what the doctor had said. I told them I didn’t even know how to feel about it. Was I happy or sad?

                They were unanimous.

                “Oh, you’re happy,” they said. “Definitely happy. Very, very happy!”

                Of course, this was the right answer. I have spent every weekday morning for the last six weeks waiting around at the Sibley Hospital cancer center. And being a former reporter, I basically eavesdrop on my fellow patients and the medical staff all the time, which is naughty, but there you go.

                My fellow patients are both men and women, most of them older than me, but not all. They have all different kinds of cancer. You can sometimes work out what kind of cancer they have by observing the hospital gowns they are wearing. In women, a short teal-blue gown often means breast cancer. In men, a long dark-blue gown often means prostate cancer. It’s much easier to figure out the situation of the people who are gabbing on their cell phones, about even the most intimate details of their conditions, so loudly that even people who aren’t actively eavesdropping can’t avoid hearing.

                Most of these people would give anything to hear the word “remission.” Some of them are just trying to stay alive long enough to make it to a certain wedding or see a relative through his own medical emergency, or hold the first grandchild, or whatever. To think they could be declared “cancer-free” for an indefinite period of time is beyond their dreams.

                So I’ve slowly been working into happy. Happy, with just the right amount of caution. We don’t want to get cocky, or jinx this. I am a Cubs fan. I understand that too happy would not be prudent. I can think of myself as “cancer-free,” but only with an asterisk. The footnote says, “For now.”

                But then, yesterday, I had my exit interview with my radiation oncologist, and it was hard not to be too happy. She told me things had gone very well, indeed. Bottom line was, she thinks there’s a very good chance—she estimated 70 percent or slightly more—that this cancer will not come back at all. She called that option “permanent remission.” It’s like being cured, only you can’t confirm that you’re cured. And even if it does come back, she said, we have plenty of treatment options that could give me another 15 years or more from that point.

                This is much better news than I had thought I was going to hear. Mind you, the most recent book stats for a person in my own situation said it was 56 percent chance of surviving a while, 44 percent chance of dying, which had scared the hell out of me and those of my friends who had tracked down this information. That book is old, I am told, and does not include the new generation of chemo drugs I’ve taken. Also, the stats include so many people who are much older and sicker than me that the numbers are meaningless for my situation.

                 I was, in fact, pretty lucky. In a nutshell, because of the specific type of breast cancer I have, and my relative youth, and my overall good health, my odds are much better than average. For example, I don’t have underlying heart disease, which meant they would whack me extra-hard with chemo drugs, and that helps.

                I had also thought previously that, if breast cancer did recur, you are automatically toast. It turns out this is not true; it depends on what kind of breast cancer it is, and a bunch of other variables. The kind I’ve got, even if it comes back, there are still a bunch of things you can do about it. It isn’t an immediate death sentence.

                So, in the end, I went home and celebrated. Prayers of thanksgiving. Loud music. TWO glasses of wine with dinner! Woo hoo! Lots of hugs and high-fives from the soccer folk. Everyone in the house posted the good news on their Facebook pages, and was amazed by the number of responses there and the pure love in so many of them.

                There are a couple of new organizations that have sprung up nationally to advocate for younger cancer patients. Technically, I am too old to belong to these organizations, but I appreciate their edginess. They do not do the pink ribbon thing. Instead, they organize happy hours and singles nights and such. They are not so much about finding “the cure” or remembering the dead, but about making the most of the here and now. Their motto, which you can find on their web sites and their T-shirts, is, “GET BUSY LIVING.”

                I’m with them.

                I’m cancer-free, for now. What had I been thinking, that I was going to get a guarantee for the future? Nobody gets that.  It doesn’t matter whether you’ve got cancer, or not. So get busy living.

               My radiation oncologist, Dr. Victoria J. Croog

                

While I was Busy Having Cancer...

                I have got 27 radiation treatments under my belt. Just one left!  That’s good, because these burns are bad enough right now, in my opinion. They have switched me over from using the lotion that looks like Vaseline to a new one, one with some badass antibiotics that they use on people they’ve pulled out of house fires. I am not a doctor or an E.M.T. or a person who works in the E.R., and I never could be one.  I don’t like looking at stuff like this, and it’s on my own self. The only other place I have seen burns like this on a person is in South Africa, where people in the townships cook on kerosene stoves in dodgy conditions, and sometimes one gets tipped over or it blows up, and you see badly burned people in the line at Pick n’ Pay or wherever. I look like that now, only not on my face and hands, but one side of my chest and one armpit.

                A couple days ago, I did have words with my radiology techs for not telling me how bad this was going to get, when clearly, they knew.

                “We don’t tell you,” one of them said, “because we don’t want you to freak out.”

                But then in the shower one morning, there were lots of bits of black stuff on the floor, and damn if it wasn’t burned pieces of my own skin.

                I freaked out.

                I told her it would have been better to have known the score in advance, actually, and she said, “Well, for YOU, maybe, yes, but not for most people.”

                What does that mean?  Most people I know—most women, anyway—can handle pain.  For Pete’s sake, I’ve had three babies. If you tell me, “This is going to hurt like hell, but it might just save your life,” I can totally deal with that.  But if you tell me to expect a minor sunburn and some itchiness, and in fact I am going to have second-degree burns and charred flesh, I might not be mentally prepared.  In any case, don’t be lying to me about it.

                So a couple more cancer lessons learned:  1) Some of your caregivers will lie to your face, and you’d best figure out which ones, and when they’re doing it; and 2) I can totally deal, anyway. Turns out I am a tough little bastard.

                Meanwhile, back at the ranch…

                Some weeks ago, somewhere in this blog, I mentioned that my youngest kid, Matthew, was having a hard time with my situation. He is eight years old. Last spring, after my diagnosis, we started seeing some very weird behavior in him, very unlike his normal self.  He had fits of irrational anger, almost always directed at me, although, by August, everyone in our immediate family had been on the receiving end at least once.

                Then, this summer, there were some heartbreaking bouts of clinical depression, where he did not want to go to camp, or to the skate park, or anywhere.  He wanted to lie on the couch and cry. For days at a time.

                And then there were some panic attacks. We could be getting ready to go somewhere in the car—possibly some place fun or harmless, like Target or a friend’s house.  And Matthew would burst into tears and beg us to not make him get in the car.

                “What if we crash?” he would say. “What if I get sick? What if there’s another earthquake, only this time the buildings all cave in?”

                Clearly, the little guy was going through his own private hell. So we sought care from an excellent psychiatrist recommended by our pediatrician.

                (I wrestled with whether to go public with all this. Mental health is a personal thing. But only my friends are still reading this blog, anyway. And Matthew has had a couple of panic attacks so publicly, at school, in front of everyone, that it seems ridiculous to pretend any longer that there’s nothing going on.)

                The psychiatrist initially thought, as did we, that Matthew was struggling with fear over my illness and whether I would die. We were all struggling with these things, at that point, so this made sense to us. A few rounds of talk therapy would set him right.  Teach him some coping skills, and he’d be fine, especially since I seemed to be getting better. Later, after I had my surgery and it was behind us, he would improve.

                Only, my surgery came and went. And, although I was getting better every day, he wasn’t.

                One day in August, our psychiatrist said he thought there was more going on. Matthew wasn’t just having problems handling my cancer.  This was much bigger, an actual anxiety disorder, a mental illness. My own illness wasn’t the cause; it was merely the trigger, the straw that broke the camel’s back.

                We spent at least a month digesting that. We thought once school started and a regular routine began, Matthew would feel better. We researched the medication they wanted to put him on—Zoloft—and saw the black-box warnings on it that tell you that this can cause suicidal thoughts in children. Gulp.

                We talked to friends who had been down this road. We took very, very seriously their good advice that sometimes, children are misdiagnosed because mental illness can present differently in children than in adults. A misdiagnosis, followed by the wrong choice of powerful drugs, can cost you dearly in terms of time and misery.

                In the end, though, he was already so miserable that I couldn’t not do anything any longer. He was asking us, daily, was there nothing we could do to make him feel less sad?

                One thing that helped me make the decision was speaking with one of my cousins, who has suffered bouts of depression since childhood. She said she could remember being Matthew’s age, and feeling utterly despondent. She said she wished to hell someone had helped her when she was a kid, instead of years later.

                So Zoloft it is.

                It’s been a few weeks, now. We think it is helping, though not completely.  We are told it can take a long time to get the dosage just right, to optimize those serotonin levels or whatever brain chemicals are causing his demons.

                We haven’t seen the fits of anger for some time now. He hasn’t been lying on the sofa crying. He seems much happier.

                But the panic attacks are still with us. Everyone in the third grade, and some of their parents, witnessed a doozy the day the class was supposed to take a field trip to Skyline Caverns. Matthew would not get on the bus. They could not make him. Eventually, his poor teacher called me to come get him and take him home; they couldn’t delay any longer.

                A week later, another field trip, this time to St. Mary’s City. Another public panic attack. But this time, I skipped my radiation treatment so I that could go along as a chaperone. When the crying and the shaking started, I put my head down, horns out. I made him get on the bus.  He cried all over me for a while. He begged to get off the bus. But as soon as the bus started moving, he settled down and was fine. It was a great day. We both had a blast.

                This week, at his Tuesday night soccer game, another perfectly-timed panic attack struck. Matthew, who has played soccer for almost four years and loves it, begged me not to make him go. He was sure he was going to throw up. I didn’t know what to do. I called the psychiatrist on the phone for advice, but could not reach him.

                This was not a behavior problem. God knows Matthew didn’t want to be terrified of one of his favorite things. Usually, in the normal course of motherhood, I am inclined to encourage my kids to get up and face their fears. I wanted to make him get out there and play. You get back on the horse after you fall off. But is that right, when your kid is mentally ill? I mean, I knew by now this was Irrationality speaking. Rationality had left the building. If I made him play, was I just being cruel?

                His head coach, puzzled, said Matthew said he has a stomach ache. Maybe he shouldn’t play.

                I gave him the ten-cent abridged version of what was going on. Matthew’s stomach is fine, I said; this is mental illness.

                There.  I had said it out loud.

                This is new to us, I said. I am not sure what to do. I am making this up as we go.

                Both his coaches, bless their hearts, took all their cues from me.

                I told Matthew he was utterly brave, and he should get out there and play.

                “I’m not brave,” he bawled, right there on the sidelines, in front of all his friends. “I’m scared.”

                I told him get out there. He was crying. I was crying.

                His sainted coaches put him in the goal, his favorite position. They found him some goalie gloves. He played goalie the entire quarter, weeping the whole time.

                He made four great saves.

                Afterward, his coaches praised him for his play, and for his bravery. Not one of his friends teased him for crying, or hassled him at all, that I could tell. And their kindness and understanding mean that Matthew has a fighting chance next week, next game, to get back on that horse again, and tell his demons to shut the hell up and let him play soccer.

                “Don’t ever tell me you’re not brave,” I told him. “You are the bravest person I know.”

                He was exhausted, but in some way happy with himself. He seemed to be considering the possibility of his own bravery. He ate a big lunch. He was in a good mood the rest of the day.

                Turns out, he’s a tough little bastard.                     

                

I don't like Mondays

                On Friday, my radiologist said I would be cursing her name by Sunday. It’s Monday now. She was right.

                She could tell on Friday I was about to have a nasty burn “blossoming” all over my right side. An interestingly euphemistic verb they use for what did indeed happen, as if it were a flower or something pretty. It’s not. It looks awful, like your worst blistering sunburn.  It hurts, a lot, though it’s nothing my pain pills and I can’t handle. But I’m crazy tired.

                Have you ever spatchcocked a chicken?  Basically, they spatchcock me daily.  You take off your clothes and they arrange you like a half-chicken on a grill.  Your right hand has to stay in an unnatural position, just so, above your head, and your left hand has to stay out of the way.  You have to turn your head to the left and stick your chin up so that your esophagus doesn’t get in the line of fire. And you have to hold this position, on a Monday, for 40 minutes or so.  (Mondays this all takes longer than on other days, because they take a bunch of x-rays every Monday in addition to the regular treatment.)  The room is freezing cold, because the machinery likes it that way. By the end of the 40 minutes your arms are shaking, because they can’t stay in that position much longer, and you are shivering. Then the tech comes and pokes you in your burned armpit again with ice-cold fingers, because apparently you have moved, and she needs to find her target dot. You try not to jump, and she tells you to relax.  You would like to relax, you really would, because if you don’t, your shoulder could be a centimeter out of line and the x-rays might come out blurry and they will have to do this all over again tomorrow, which would suck. You look at the insipid photos of cherry blossoms they have put on the ceiling, for the thousandth time, and try to relax your right shoulder.

                When they finally finish and they come back to tell you that you can take your arm down, you almost can’t.  And your neck is stuck at a strange angle, and you could sure use a neck rub from someone, but you don’t want anyone to touch you, unless their hands are really warm.

                What is extra fun is when they use a “bolus,” which is a fancy name for a big, soaking-wet towel.  Every other day, they drape you in a sopping wet towel before they zap you.  The wet towel, which gets cold pretty fast, helps you brown evenly.  It’s like when you drape slices of bacon over a turkey breast before you roast it. I am pretty well done; put a fork in me.  Crispy on the outside, hopefully not too dried out on the inside.

                I am not joking.  I had to ask the tech this morning if I am supposed to be turning this color, or if I have got skin cancer now, too.  Oh, no, she said, this is what you’re supposed to look like. Your neck isn’t quite brown enough, but the rest is coming along nicely.

                How brown do they want me? If I were poultry, I would be Peking duck already. That’s what my armpit looks like, anyway. If I weren’t such an uptight person, I would post photos, but that ain’t gonna happen.

                Enough whining. There is good news, too.

                I aced rehab.

                I have enjoyed all the recent rehab jokes, friends, but here is what I really had to get rehabilitated from:  all this radiation, along with the surgery, where they took a bunch of lymph nodes out of that same armpit, causes scar tissue.  The scar tissue started interfering with the movement of my shoulder and arm.  I couldn’t reach the top shelf where the glasses are, for example, or push the vacuum cleaner without some pain. The answer to this problem was physical therapy at the rehab place at Montgomery General Hospital in Olney.

                Well, I was the star pupil at rehab.  I was motivated, as they say.  I did not want to piss around with any more medical appointments than was strictly necessary.  Also, I did not like that place, where it is crowded, and there is no privacy, and one of the old biddies in the office there thought I was Matthew’s grandma. So I did all my exercises just like they told me to, and I studied their pamphlet on how to not get lymphedema, which is when your arm swells up because your lymph nodes are gone. My therapist was impressed. When they measured my arm movement and it was back to normal, and I correctly recited my lymphedema facts, I got a gold star and an honorable discharge.

                I know I shouldn’t be glib about lymphedema. One of my friends has it. It sucks.  And one of the other women at rehab has it, and I wouldn’t like the treatment she was getting.  They wrapped her entire arm tightly in thick, stretchy foam and left her trussed up that way for a couple of days, to try to compress everything back to where it should be.  I cannot tell you how claustrophobic this would have made me, or how hard it would be to drive or eat or sleep in that getup.

                So, I basically have to be very nice to my right arm from now on.  I’ll have to wear a pressure sleeve on it when I fly. I can’t take my blood pressure on that arm any more, or get flu shots in it. Everyone at the cancer center at Sibley Hospital bitches at me if they see me carrying my backpack on my right shoulder, so I try not to let them see that. I have to get a Medicalert bracelet that tells people to leave my right arm the hell alone. For now, my right arm and right hand are exactly the same size as my left—we measured them—so I’m pretty lucky.

                The other thing that seems to be going well is boob reconstruction. Without going into too much gory detail, let’s just say that I can look past the scars and the blistered skin and see where the plastic surgeon is going with this.  In the end, I am going to have two fine boobs, even if it is going to take a while to get there. I’m not posting photos of that, either.

               

               

This is what the fingernails look like, with tree rings caused by each chemo treatment.

Sex and Cancer: Your Intimate Questions Answered

                One side effect of cancer is bad writing.  I do not mean bad amateur writing, like this blog for example, because at least most of the amateur writing I’ve found has a certain amount of honesty and personal experience in it.  No, I mean bad writing by professionals.  The cancer community, as it likes to call itself, is just bloated with bad writing.

                As you can tell by walking through any grocery store during October, Breast Cancer Awareness Month, there is plenty of money to be made in Cancer Land. Potato chips for the Cure?  Pink breath mints?  This month our local Giant store is full of large signs that say, “Fill your cart for the Cure,” with big pink ribbons, and they piss me off every time I go in there. Well, the geniuses that run the world of publishing have also figured out there is money to be made, here.  They are pumping out cancer magazines like the Duggars pump out babies.  They are full of ads from pharmaceutical companies. And most of the writing is really, really lame.

                They have racks full of these publications at every cancer doctor’s office I’ve been to. I end up reading this dreck because I am a compulsive reader and I have already read every other printed material they have there that doesn’t have the word “golf” in the title.

                This week, I just have to vent. The headline on the most recent stack of cancer magazines says, “Sex and Cancer:  YOUR INTIMATE QUESTIONS ANSWERED.” Of course, every shred of information is geared toward persons above the age of 60, because that’s where the money is.  The frisky old cancer patients in the cover photo look as if they might actually want to kiss each other, and then it would be Katie-bar-the-door. But worse, almost every paragraph in the story is insipid.

                Did you know, for instance, that missing body parts, such as breasts or prostate glands, might affect your self-image or your sexual desire?

                Did you know that chemotherapy dries out every part of you that is supposed to be moist? (We can sell you some products to help with this, by the way. We got ads for this stuff in our cancer magazine.)

                Did you know that:

                                --You might be experiencing some degree of tiredness.

                                --You might be experiencing some stress.

                                --You might be experiencing some pain. And if you are, and if you’re getting high as a                                    kite on your pain meds, you might also be experiencing some libido issues.

                It breaks my heart that they killed perfectly good trees to make paper to print this stuff. I am sure someone got paid a lot of money to write this.  Why wasn’t it me? I would have taken their money, and I could have sucked the whole thing out of my thumb. Here is an actual quote from this magazine:

                “Try timing intimacy when you feel your best. For instance, before your next course of chemotherapy; in the morning when you’ve rested, or just after taking your pain medication, but before you’re too sleepy.”

                Gee, we hadn’t thought of that.

                I can confirm that chemotherapy is really bad for hot sex, unless your partner enjoys sex with unconscious persons, or persons who are hallucinating about soccer games or copper mines or whatever.  In that case, I would say go for it right in the middle of your chemo.  I would say wait until just after they hit you up with a boatload of Ativan.

                Hell, I could have given them lots of tips on cancer sex. Here are a few more:

·         You will need a robust sense of humor.

·         You will need a partner who has a robust sense of humor, and is not a jerk. Do not attempt this with a humorless asshole. (Query: you of all people know that life is short; why are you still with a humorless asshole, anyway?)

·         If you have a humor-enabled, kind partner who likes you, and has waited around while you’re doing chemo, for, say, three or four months, until the nausea has worn off enough that you would consider having sex with someone, lucky you! By now, that person probably won’t give a damn what you look like. So throw those silly self-image issues out the window.

·         Chocolate martinis. Tasty and expeditious. Have a couple.

                Enough of this.  We are about to veer off into Too Much Information, and my mom is probably reading this, anyway, and here we’ve already visited sex, drugs, alcohol, and foul language!  If you are personally experiencing a cancer sex crisis, just call me up on the phone.  We’ll talk.

               

                

Ode to Eyelashes

My sister, Judy, shared with me her Ode to Eyelashes:

Oh, lashes, lashes, where are they?
I miss 'em in an expressive way. 
They filter dust, and look so purty. 
And I could use 'em to be quite flirty. 
"They'll grow back", yes , I have been told. 
But will they grey and make me old?