The Second Reason Why We Had to Have a Party

                So the first reason why I had to have a party last Saturday is just that I’ve been pretty giddy lately. I was prepared to go all drunk and disorderly, but wiser heads prevailed. Are we getting old, or are we getting smarter? I think most people had a good time, and we ate a lot and got to catch up with each other a bit. It has been, literally, ten years or more since some of us have been in the same room together.  It was fun watching friends from my various worlds collide. My buddy, Sharon, and I did stay up until 2am talking, like in the old days before children, only this time, my daughter joined us for the first time. That was very cool.

                How appropriate that I am writing this blog entry the day before Thanksgiving. The second reason why I had to have a party is to try to say thank you to everyone for all the love and prayer and practical help they have given us.

                This saying thanks is an ongoing process. I will probably be at it for, like, forever. I have already had a crack at publicly thanking people a couple of times. I went to our Quaker high school’s Meeting for Worship a couple weeks ago, and tried to say thank you there to the students and teachers. And then I stood up in my own United Methodist church and tried to thank the folks there.

                First, I want to thank everyone for praying for me.

                Last March, when I first found that lump in my breast, the day before I went to my doctor, I sought out a friend at church and asked her to lay hands on me and pray for me, in the ancient tradition. She did. Later that week, when we’d seen the X-rays and knew I was in deep trouble, I put myself on our church’s prayer chain. At that point, my son, Sean, who was a sophomore at the time, stood up in his high school Meeting for Worship and asked people to hold me in the Light, as the Quakers say.

                Since then, I have been prayed for by people of many descriptions, Christians, Muslims, Jews, Wiccans, maybe others. I suspect maybe even a few atheists may have put in a good word for me with the Ineffable Mystery. I know of one classmate of Julia’s who, with her mother, has prayed for me every day since March. I have been prayed for in Australia and Africa.  I have had candles lit for me in Rome.

                I can’t tell you how much this has meant to me.

                The other day, when I stood up in Meeting for Worship to thank my high-school Friends, one of the things I told them was how well I was doing. I said I was lucky in the specific type of cancer I got, because it was responsive to chemotherapy and Tamoxifen. Later in that Meeting, our Head of School, Tom, had a few words of his own to add. He said he does not believe in luck; he believes in grace. I think what he was saying was that by opening up and asking for help from everyone, as we had done, we opened ourselves up to all the available means of grace. We sort of threw ourselves on the strength of the Community, and it helped us tremendously.

                Now, I am not ready to claim that prayer is what caused me to get better. (I am not ready to deny that, either.) I know our church has prayed for other people, recently, with the same diagnosis as me, and some of them got better, and some of them died, leaving small children in tragic situations. I can’t begin to say why sometimes the answer is “yes” and sometimes it is “no.”  It is a mystery to me. However, I can honestly say I did feel the power of everyone’s prayer, and it gave me great peace. That, in itself, had to help my family and me heal.

                I believe everyone’s prayers kept me from going off the rails, emotionally. I was unusually able to not panic. This was very important when I was making serious medical decisions. It also freed up a lot of energy. Instead of using all my strength to freak out, I was mostly able to conserve it to get through the chemo and the other crap.

                I believe everyone’s prayers also got me through depression. This summer, in August, I hit a low point. I was exhausted and feeling absolutely lousy. In addition to me being sick, Matthew was not doing well at all, and there was some other stuff going on, too.  I was running on empty, physically and emotionally. At some point, I had what you would call a faith crisis. I pretty much believed God was there, all right, but I didn’t personally care. His ways were so mysterious they had pretty much become irrelevant. I may have been clinically depressed; it lasted for a couple of weeks.

                In the end, I snapped out of it. Not through any strength of my own, but because, even when I stopped praying, lots of you guys didn’t. When I had no faith, I used yours. And when I was at one of my lowest points, Dennis and Luke would walk in the door with a meal, and a blueberry cobbler, or Brenna would show up with a plate of Rice Krispies treats. Or a box of fresh huckleberries would arrive at my door. Of course, in the end, I realized the bottom line was:  of course there is a God. I was seeing That of God, in all of you. Where else would all this love come from? So you got me through that, too.

                In addition to all your prayers, your practical help and love were magnificent.

                You sent me wonderful notes and cards and drawings. I have them stuck to my fridge and sitting next to my computer screen. I am now getting remission cards. I have one on my fridge right now from Matthew’s buddy, Ben.

                At the beginning of all this, I was terrified that people would freak out and hide from me.  I had seen that happen before to seriously ill people. When a potentially-fatal illness strikes so randomly, it can scare people away. You become a walking advertisement for mortality, a reminder that this can happen to anyone. And people don’t know what to say, it’s awkward, and they become so uncomfortable, they run away.

                This did not happen to me. At all. None of you guys even blinked. Everywhere I went, at school, at church, at the grocery store, I kept getting my hugs. Even when I was at my sickest, and the chemo made me swell up and turn red and go bald, nobody flinched. You gave me silly hats. You made sick jokes. We got through it. Nobody ran away.

                You all drove my kids around and fed them, when I was in the hospital or at chemo. You had Matthew over for play dates so he could have a little normalcy. You drove to Jessup to go dancing with me—with an oompah band, for God’s sake—when I needed to go dancing. You drove me to Idaho, at one point, when I wanted to see the camas blooming. You went to the movies with me while I waited for biopsy results, and you sat with John while I had surgery. You brought us all kinds of delicious food. You brought me books to read. And when I got too sick to read, you brought me audio books and funny DVDs instead.

                You never stopped inviting me out or asking me over for dinner, even when I could hardly eat anything, and you knew it. Sometimes you just let me talk, even when I was saying some pretty dark stuff.

                Those of you who are reading this, who have good and loving parents, do you remember what it was like to be a little kid and have the flu? And no matter what time you woke up with your fever, your mom was there? That is what you were like, for me.

                At one point in June, it’s the day after I got my chemo. I am pretty much unconscious for two full days; when I’m awake, I’m pretty much on the planet Tralfamadore. And our dear friend, Peter, is here, all the way from Canberra, Australia, helping John take care of me.  He just sits with me and sends emails and makes phone calls while I sleep. I wake up, and I don’t know who or where I am, but that is Peter sitting there, so this must be Maryland and it must be okay. And I go back to sleep.

                I will always love you guys.

The First Reason Why We Had to Have a Party

  

                I’ve spent a large chunk of this blog, in the past months, explaining various kinds of fear and pain. Let me try now to explain, somehow, the other end of the spectrum. Let me try to explain how good I’m feeling these days, and why I had to have a little party at my house on Saturday, with loud music and lots of drink and cars parked up and down the block.

                I’m feeling very good. Frighteningly good. I have been going around laughing and looking into my friends’ eyes and telling them I love them, and so forth. I’m probably scaring people. I want to go dancing. I want to drink exotic shooters with silly names. I’m just feeling intensely alive. Life is very good, and it is of finite duration, and I am going to try not to waste it just driving back and forth through suburbia. I am still working out the implications of that. And recently, I had felt such an intense, almost physical, need to have a party that we did.

                We can’t blame medication. I’m not taking any wacky drugs right now. Part of it is probably just not feeling bad any more. When you’ve been feeling as bad as I was during chemo, not feeling bad any more feels pretty damn good! But what I’ve got is more than just the opposite of feeling crappy. It’s tipped over into borderline euphoria. There is just something uniquely exhilarating about thinking you are about to be dead, but finding yourself alive, instead.

                It’s Biblical. It says in Ecclesiastes, there’s a time to weep, and a time to laugh, a time to mourn, and a time to dance. Well, this is the time to dance, if I can find someone to dance with me.

                It’s also like the parable of the lost coin, where the woman has ten coins and loses one, and cleans house until she finds it, and then invites all her neighbors to party with her.  Only, in my case, it wasn’t a coin I had lost; it was almost my life.

                I can only remember one other incident in my whole life that gave me this same sort of giddiness that not dying of cancer has given me. It was maybe twenty years ago, before kids and domesticity. Even then, John was already a poobah with the World Bank. I was accompanying him on a business trip around east Africa and southern Africa; at this point, we had flown from Dar es Salaam, Tanzania, to Lilongwe, Malawi.  We were going to rent a car and drive the long way to Blantyre, where John had World Bank business to attend to. We were going to take one day first and drive through the middle of absolutely nowhere so I could see Lake Malawi, which I had read about, and maybe go fishing there.

                This was back during the reign of President-for-Life Hastings Banda, and Malawi was seriously messed up. It was one of the poorest places in the world. This is the only place I have ever seen starving children. This is the only place where you would see women dressed in shirts and skirts with Banda’s face printed all over them. And it is the only place, where, although my husband was a big shot with the World Bank, and a delegation of dignitaries had come to meet our plane and escort him through the V.I.P. lounge at the international airport, I was stopped.  I was not allowed to leave the V.I.P. lounge because I was wearing a Hilary-Clinton-style linen pantsuit, with trousers, in a country where women were not allowed to wear trousers of any description.  (John adds that one of his Japanese colleagues was also stopped and made to have a haircut, since his hair actually touched his shirt collar.)

                You can imagine what level attitude problem I quickly developed. I am not a dress-wearing person in the most normal situations, much less when I am about to go driving through the African backcountry to a fishing spot. And never before had I personally been on the receiving end of what felt like a human-rights violation. But they told me that if I left the V.I.P. lounge in trousers, I would be arrested. Fuming and humiliated, I dug through my luggage. By the grace of God, I had a cotton skirt in my suitcase, and I put it on and was released by the very relieved local official who had detained me. This all took some time.

                So I was in a floaty skirt, but still loaded for bear, a couple hours later when we wrecked our car.

                We were driving along, as fast as you could go on that African dirt road, maybe 40 mph, when suddenly the road wasn’t there.  A bridge was completely washed out, and utterly unmarked. We went headfirst over the edge. In the sort of superhuman-strength-moment you read about in the National Enquirer, John, who was driving, braced himself with one hand. He put his other arm out and kept my head from going through the windshield.

                The car landed nose-down, in the bottom of the riverbed. The riverbed was nearly dry. I don’t remember getting out of the car. The only blood we could find anywhere was John’s, where every nail on one of my hands had dug into his outstretched arm. (He still has the scars, twenty years later.)

                This was before cell phones. We were in the middle of nowhere with our car at a 90-degree angle with reality. And then, out of the maize fields a farmer and his whole extended family materialized, like a host of angels. They did not speak English. We did not speak Chichewa. But quicker than you could believe, they organized themselves into a human crane and together we bodily lifted our car up and put it back onto the road

                I was in shock. I don’t remember trying to thank them; I don’t remember giving them any money. I am sure we did both. I do remember giving our only food, half a package of Romany Creams, to some of the children, and a fistfight broke out over the crumbs.

                We had to turn back. We limped into the city. Miraculously, we did not run out of gas. By the time we got there it was dark. We found a room in the fancy expats’ hotel. We were ravenous; we went to the hotel restaurant to have something to eat. I don’t remember what we ate, but I bet I ordered a steak. I hope we got drunk later and had a crazy night of passion, but I don’t remember and neither does John. I remember what the restaurant looked like. And I remember laughing.

                I had looked down, in that fancy restaurant, and noticed there was black grease from the car all over my only skirt.

                “I messed up my skirt when we picked up the car out of the river,” I said, and that struck me as hugely funny.

                I started laughing. We both started laughing. Laughing until we couldn’t breathe. Laughing until people stared and shook their heads at the loud Americans.  People thought we were drunk, and we were thinking, you have no idea. We thought we were going to die, and here we are, eating a steak. We thought we were going to die, but here we are, just laughing and laughing.

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