Five down, one to go

                Had my fifth of six chemo treatments yesterday, and I am safely home and briefly sober.  I am still allergic to the Taxotere, and as antidote they pump me full of Ativan, which stops the terrible muscle spasms, but also sends me flying.  Apparently on the way home, I was hallucinating about how the hell we were going to get Julia to her soccer game.  (Julia is actually in France at the moment, and there was no soccer game.) But as we drove through the construction area along Wisconsin Avenue, around the Bethesda Naval Hospital, I was quite sure we were supposed to be finding a soccer field in all that mess.  Then I passed out again, which was for the good. I slept straight through from then—about 5pm—until 3am.  Thought about washing the floors (that was just the steroids talking) but I thought better of it and went back to sleep. Now it’s 7am and I have a few good hours before the other nasty drugs from yesterday seriously kick in.

                The treatment went okay.  It was nearly imporssible for any of the nurses or the blood test guy to find a vein we haven’t ruined with these nasty drugs.  I am all black and blue, and I look like I’ve been shooting heroin. They eventually got it done.  But for my last treatment, in three weeks, I am going to have to go to Sibley Hospital first and get a temporary arm catheter put in so they can do what they need to do.

                Otherwise, it was all good news.  My oncologist was just happy with how the tumors have shrunk.  “I have to tell you,” he said somberly, which scared me until he looked up at me and was SMILING, “you are just doing great!”  Then he patted me on the shoulder—unheard of—“You’re doing great!” He was very happy.

                Apparently, when this part of the treatment is over, I’m going to maybe join some exciting new studies where you try certain diabetes drugs, among other things, that have been found to reduce the risk of breast cancer.  Brave new world!

Silkworms and mortality

NOTE:  I thought I had posted this on Saturday, but something went wrong.  It is from last weekend.  Sorry it appears out of its proper order!  (The good news in the previous post came after I wrote this post.)

                Matthew’s silkworm moth emerged from its cocoon while we were at the beach! This is a good tiding of great joy for Matthew, who had begun to suspect it had died in there.  The second grade at SSFS always does a big unit on silk, culminating in the raising of silkworms.  The worms start out tiny, and get to be big and ugly, and they eat a lot of mulberry leaves along the way.  Fortunately, we have a big mulberry tree in our backyard, and there are others at school, so these guys did not go hungry. It takes several weeks, and the worms always get named and become pets.  Matthew’s is named Alexander Ovechkin, after the great hockey player. While Matthew was out of school following his recent concussion, I had to take him in so he could visit Alexander Ovechkin the silkworm and make sure he was doing okay, which he was.  But after Alexander went into his cocoon, we heard no more out of him, and he was well overdue to emerge by the time we left for the beach.  We were very sad.

                How happy I was when Sean and I came home from the beach—we came home two days earlier than the others, due to Sean having commitments in town—to be able to call Matthew and report that Alexander Ovechkin the moth was sitting on the counter looking pretty pleased with himself. For the record, although the Internets say these domesticated silk moths have lost all ability to fly, Alexander Ovechkin made it all the way to the other end of the kitchen, at one point.  So he’s fairly fulfilled, I guess, for a silkworm moth.

                The last day of second grade, when Matthew had brought Alexander Ovechkin home in his cocoon, in a little plastic cup, the teachers, Amy and Katharine, had sent home a note which read:

                “Care and feeding of your silk moth:

                                1. It does not eat.

                                2. It does not fly.

                                3. It will die within a week.

                                4. It may lay eggs which will not hatch.

                                5. Have a great summer!”

                As a lesson in mortality, silkworms can’t be beat. This is our family’s third experience with their brief, tragic lives. I believe that somewhere in Sean’s and Julia’s rooms, you can still find two tiny silkworm coffins. Tears were shed over those little bodies, even though they had also come home with that same cheery note from Amy and Katharine, explaining that silkworms are a temporary thing, not meant to last more than a week. Sean and Julia still cried over them. They didn’t even get to have kids! And they never got to fly!

                Now, mortality has been an issue in our house lately.

                Matthew, who is eight, is obviously wrestling with it, but is nowhere near able to use his words to express what he’s going through. At school, apparently, he has been a little angel.  I have this on the authority of two teachers and a guidance counselor, all of whom have made it their business to keep a special eye on Matthew while I’m sick and give him lots of opportunities to express his feelings. As his counselor said, school seems to be his happy place, where everything is still running along normally.

                 But at home, it has been another story.  Matthew has been very angry with me, angrier than any of my children have ever been.  He really wants things to be lots more normal than they are.  He is not enjoying my baldness or any of our little recent cancer jokes, not one little bit. Regularly, he blows up, and I get screamed at:  “I hate you.”  “Never talk to me, ever again.”  “I don’t want to be in this family anymore.” The screaming can start at any time, over any innocuous thing, like me asking him to brush his teeth or put on a clean shirt or find his ball for soccer practice.

                We have the name of a good child psychiatrist, and John and I are debating whether it is time to make the call.

                “Do you remember what you were like when your father was sick?” my mom asks me.

                I do.  My father died of brain cancer when I was eight years old, the same age Matthew is now. And that same year, my aunt and my uncle also died of cancer. It was a terrible time. My reaction was to become, among other things, a total hypochondriac.  I devoured all the stories in Readers’ Digest that featured young people dying nobly of cancer.  I was pretty sure I would get leukemia, or something. I developed serious problems sleeping.  I never screamed “I hate you” at my mother, but I am sure she would have paid good money to have someone else try to get me to go to sleep, just once, there for a while. If anybody ever needed counseling, it was me then, but people didn’t run out and get counseling, in those days, even if they needed it.

                “He’s terrified of losing you,” my mom says.

                Of course, she is right, though it doesn’t mean he can make a habit out of screaming “I hate you!” at me during soccer practice, with other horrified moms pretending not to listen.  For now, my approach is going to be to try to get him to talk about how he’s feeling, which is clearly very upset, thank you very much, while still setting boundaries about appropriate ways to do so.  (No, it is not appropriate to throw your water bottle hard at Mom because you are scared she is dying.)

                I can relate to him freaking out over my mortality.  I’ve been freaking out about it, this week, myself.  Although several of you people reading this blog have told me how “brave” and full of “spirit” I am and so forth, this week I pretty much fell apart. Fortunately, it happened on Wednesday, while everyone was out of the house at the beach and I could keep it to myself.

                For some reason, it really hit me for the first time, that, damn, I AM going to die, if not of breast cancer now, then of something else some other time.  And I don’t want to die! Now or ever! I started feeling tightness in my chest, it was hard to breathe.  It was a classic panic attack, like the ones I used to get on airplanes before I started taking Xanax on airplanes.

                This all deteriorated, pretty quickly, into a crisis of faith—if God were real why would He design humans to feel eternal but pretty obviously be mortal?  What was he thinking? And why is all the evidence for God so mysterious, anyway, that you have to take it all on faith.  I haven’t got much right at this moment. Of course, the idea that maybe God isn’t there does not make the idea of dying any more palatable, so it all became a big spiral of doom in my mind.  Not a fun couple of days.

                I am not sure why it hit me all of a sudden.  I was in the middle of reading a book recommended by a friend, a book written by a monk about the benefits of the monastic lifestyle, of celibacy and “detaching” from the world.  I’m reading it and thinking, hell, I don’t want to detach from the world—I want to be attached to the world in every way I can think of! And then I’m just freaking out.

                It shouldn’t be such a surprise to me that I’m going to die, some day.  Of course you know intellectually that you are mortal. I’ve seen people die before.  I held my grandmother’s hand while she died, and it wasn’t terrible at all; it was a sacred moment. So why am I so terrified? It’s one thing to know something intellectually, and it’s another to feel a tumor in your own breast, and be aware that it might be getting bigger. But, particularly since I’m a Christian, supposed to believe in a loving God and the resurrection of the body and so forth, why am I suddenly so afraid?

                I still don’t know.  Partly it is Matthew, I’m pretty sure.  I really, really don’t want to leave a kid at the same point where my dad left me. That was something I never dreamed I might be doing. But part of it is also my own bodily fear, which I have to just work through or wait out.

                I had the whole weekend to myself, which was good, because I haven’t had much time recently to quietly freak out and think these things through.  But Sean left early yesterday for a church mission trip, and John and Julia and Matthew don’t get home from the beach until tonight. It’s been good to be able to sit around and cry and not freak out anyone else.

                I did go to church this morning, and that was good. It was Trinity Sunday, and Martha mentioned in the course of her sermon that even at the Great Commissioning, some of the disciples were still doubting.  And that was okay; it showed they were still thinking and wrestling with their faith.  As a fellow doubter, I appreciated that.

                And while everyone still hugged me and asked how I am, and I said, “Good!” because physically I am feeling fine, I did admit to a few people, “Good.  But I’ve sort of spent the week freaking out.”

                I love my church.  None of the people to whom I admitted this told me to have faith, or cheer up, or anything else that is easy to say. They just looked at me, and listened.  One person said, “Well, of course, you’ve got your mortality right in your face right now, don’t you?”

                One of the other people was a woman who is one of my favorite people, a Christian who does not shy away from looking into the shadows.

                “I’ve been freaking out all week,” I told her. “I don’t know why.  Nothing’s changed.”

                She does not look surprised. She knows that, until now, I hadn’t been freaking out.

                “So you did,” she said.  “And, you survived.”

                And with that one statement, she made me feel better.  She acknowledged my faith crisis, totally didn’t judge me for it, and pointed out that, already, it was passing. I felt better than I had in days.

               

               

               

                               

               

               

               

               

               

               

Some good news!

                Some good news to share today! Yesterday morning we met with my surgeon for the first time since I first got diagnosed. I was very apprehensive going into this meeting, because I’ve been having pain again in my breast, and I had assumed that it was because the tumors were growing.  That would have been very bad, considering we have been throwing everything we can at them, in terms of chemotherapy.  However, it turns out the pain was because the tumors have actually shrunk in a big way, and the pain is caused by the normal tissue shifting to accommodate itself to the new situation.  My surgeon was actually delighted with how it is going. She was visibly excited. So now plans are underway for my surgery after chemo is over and I’ve had a couple weeks to get over it.

                This is all becoming something of a numbers game, and I have to figure out how much of a gambler I am and how comfortable I am with some kinds of risk.  I have to make some decisions before my surgery, the third week in  August.  (It was supposed to have been a bit earlier, but my surgeon is going on vacation at the originally-scheduled time.)

When I was first diagnosed, I had asked about the possibility of doing a double mastectomy and getting it over with.  At that time, I was told that we were not going to be stressing my body with any unnecessary surgery, and I was only going to have a single mastectomy.  I was told this as if it were not open for discussion.

However, they are rethinking this idea now. First, we are going to do some genetic testing to see whether I have one of many possible nasty genetic mutations that could make me more susceptible to cancer.  They are thinking this is possible because I am relatively young, and my brother was also relatively young when he got colon cancer.  If I do have a nasty mutation, we will probably go with a double mastectomy, because chances of a recurrence in the other breast would be 50-90 percent.  As my doctor says, that would be a “no-brainer.”  But if there is no nasty mutation, I get to decide what we’ll do.  Apparently, without the mutation, there’s something like a 20 percent chance of getting cancer in the other breast.  The doctors consider this relatively low and they wouldn’t advise double surgery if it were up to them.  But it sounds fairly high to me, and I’d rather not ever do chemo again, if I can avoid it!  But, even with double mastectomy, there is a slim chance of recurrence;  maybe 5 percent.  So I have to decide what level of risk I’m comfortable with.

We are also going to hear from a plastic surgeon on the relative benefits of single- vs. double- surgery.  Apparently it’s easier to get your new fake boobs to match if they aren’t trying to match a fake one to a real one.  So the bottom line is: prayers for wisdom for all of us will be gratefully accepted!

                

Baldness isn't all bad

                Part of me actually doesn’t mind being bald for a while.  I mean, it’s unattractive and all that, but it is also serving a useful purpose:  it is an immediate signal to everyone that I am sick and in a vulnerable place.  I am becoming used to a stream of strangers coming up to me and offering their support.  It is very nice.

                I just came home from Giant.  While I was in the checkout line, a woman came up to me, and asked me if I minded speaking to her, and if I were recently in cancer treatment.

                “Recently?”  I said.  “I’m smack in the middle of it.”

                So we had a good chat right there.  She is about a year and a half ahead of me.  She has glorious hair again.  She has had reconstructive surgery and is having a bit more.  We got to compare notes; the chemo is the worst part, she says.  (Everyone says that!)  This makes me happy because the surgery is sort of the part that scares me right now.  Nope, she says, you can get through the chemo, you can do anything.  She asks me my name and I know she will pray for me, and I will pray for her, and this means a great deal to me. I get a big hug.

                And at the gym the other day, a woman approached me at the lateral abs machine.  “I can’t help but noticing you are in treatment,” she says.  “How are you doing?”

                So we have a great chat.  I ask her what the worst part was for her.  “Chemo for sure,” she said. That’s what I want to hear.  She gives me a few hints, and a big hug, and says she will pray for me.

                And at the Methodist conference, I had to ask directions to a certain meeting from one of the stewards.  He says to me, “I can tell from your hairstyle that you need one of my hand-carved crosses.”

                And out of his pocket he pulls a wooden cross that he had made himself out of teak wood.  He had a couple of them.  He knew he would meet someone during the day who needed prayer and a handmade cross.  I got another big hug.

                So everywhere I go, I am followed by a sort of underground support network of people I have never met.  They lurk at Giant and at the gym and at the Marriott hotel in Baltimore.  Total strangers are praying for me.  I hope the cosmos returns their good will, with interest.  They are making me stronger.

Chemo two-thirds done!

                Just a quick update to let everyone know that my fourth of six chemotherapy sessions is in the books. It was fairly uneventful, but it really laid me out for a few days.  Went in on Thursday morning, and I pretty much was laid out on one sofa or another until Sunday night.  But aside from a trippy migraine, it was pretty much just exhaustion, and not nasty side effects. They said the tiredness would seem worse with later treatments, and that seems so.  John can attest that if the Cubs can lose eight in a row, or whatever it is now, and I don’t even bother to curse, I must be tired.  For a while on Sunday, breathing itself seemed like a chore.

                But I continue to be amazed at how rapidly I start feeling better, when I start feeling better. On Friday, I was too messed up to even dance once at our school’s Big Band dance.  I made it through Matthew’s 1-mile race on Saturday morning, but just barely.  Doing a load of laundry seemed like a worthwhile task for an entire day.  But now, it’s Wednesday, and I am getting all sorts of pre-vacation chores done and feeling pretty normal. The human body’s powers of recovery really are something.

                Continued thanks to all of you guys for your prayers and well-wishes.  I continue to be very lucky (or blessed) in terms of all the things that are NOT going wrong.  I have friends who are also fighting breast cancer, and from them I hear of all sorts of miserable, disgusting, and terrifying things that can happen.  So far, I’ve been hugely fortunate.  I haven’t had bone pain, or incorrigible diarrhea, or swollen limbs, or severe eye trouble, or nausea.  Just been laid out on the couch, is all.

My oldest brother was treated for colon cancer six years ago.  (He’s doing well now.) He went through a lot of those horrific side-effects. At one point, I think he would tell you, he was in physical agony.  He actually ripped a bathroom sink off the wall with his bare hands, he was in such pain. That is the sort of experience I expected I would also have to endure, but I have had none of that.  I have a pill that turned my version of his problem into a minor inconvenience at worst. When I do get a side-effect, such as crazy eye watering so that I can’t see, the wonder nurses often have a simple answer:  in my case, take some vitamin B6.  Problem not solved completely, but much, much improved.  So thank God for all those cancer researchers and fundraisers and oncology nurses who have been busy the past few years!  I salute you.

                From a scientific viewpoint, I wish I could describe properly what this stoned-ness has been like.  It’s not a pleasant buzz, like having a glass of wine too many.  Space and dimension are messed up.  This is why I will NOT drive while I’m whacked.  The kitchen table seems very low of a sudden.  The bathroom seems very large. And music sounds different. I can tell I’m messed up when I don’t bother to turn on the music.  And I can tell I’m back when the music sounds good again. Very, very strange.

                My biggest challenge this week is keeping my head together. We have a daughter graduating middle school and a near-daughter graduating high school. Between the emotions of everyone splitting off to go to different schools, and the slide shows featuring adorable three-year-olds who have suddenly become young women, it is hard to keep it together.  Add to that all the angst about mortality, time passing quickly, thoughts on the existence of God, and so forth, it’s hard to keep the mind from whipping around a little too fast.  A little bit of mental whiplash going on, but that might be the point for this season. Looking forward to a glass of wine with friends at UBQ this Friday more than I can say!

                

It's going pretty well, I'm ready for Round Four

                Hello!  It’s been a while since I posted because there has been little of interest to say.  I’ve been feeling great for about two weeks. Now I’m back on the steroids in preparation for tomorrow’s chemo treatment, which will be #4 out of 6. Just a few notes to clear up in the meantime.

                We had an excellent Memorial Day camping trip with the eighth grade from Sandy Spring Friends School and their families and friends.  It was extra special to have our dear friend, Peter Kanowski, join us all the way from Canberra, Australia, for the weekend.  He’s a college buddy of mine and John’s from Oxford, and it’s one of those friendships where we might not see each other for a few years, but we always pick up right where we left off.  It was really, really fun.  Thanks, all, for the hiking, and the strawberries, the bacon, and, yes, the wine!

                The trip was relevant to this blog for two reasons:  1) I learned that you can do a pretty strenuous hike even while you are on chemo.  You just have to take it slow.   2) There were three other women in our group, alone, who have gone through breast cancer themselves and lived to tell the tale.  Some of them are not very public about it, and I hadn’t even known about two of them until very recently.  However, they came and spoke with me and offered their support, and it was very encouraging. On those days when you are feeling darkly mortal, it is great to have someone mention, “Oh, yes, I did that nine years ago.  I remember that feeling.” Thank you, ladies, for your great encouragement!

                Other notes:

                For one thing, I have pretty much decided to forego the Ritalin unless my mental jumpiness doesn’t clear up after chemo ends completely. I have my chemo on a three-week schedule, and the third week after the treatment, I have felt fairly normal.  If that means my craziest period will end when the chemo does, in July, I feel I can and should tough it out.  I have heard from some of you who have experienced Ritalin in an effort to fight chemo brain, and I appreciate your input.  I hear what some of you are saying, that in some cases it really makes matters worse. I really don’t want to see what “jumpier and crazier” feels like right now, so I’m going to give it a miss unless I sense permanent brain problems as months go by.

                And a little good news—the scarring on my hand from the Taxotere burn is really fading.  From what the nurse told me, I was expecting the scarring to be notable and permanent.  But it has faded to the point where it is no big deal, certainly nothing I would call a disfigurement. Yay!

                The latest crazy chemo side-effect is another product of the Taxotere.  My eyes have decided to run all the time.  I often look as if I’m crying, sometimes literally with tears running down my face, and there is a constant sniffling and coughing going on.  It’s not contagious, and I’m not sad, but I look and sound like hell.  I hope it’s not permanent!

                I’ll leave you for today with a link to a photo of me that just appeared on the website of the regional conference of the United Methodist Church. We had our annual conference this week, and, after years of painful dithering, we finally voted to allow our clergy to conduct gay marriages, and also to remove hurtful anti-homosexuality language from our denomination’s rule book.  Yay us!  I was a lay delegate and did speak on the issue, and of course I looked so exotically breast-cancery that they used my photo.  I did not realize I looked so bloated (I knew I looked so bald!) but it just goes to show you, life goes on even during chemo:

http://www.bwcumc.org/news/members_vote_spirit_growth_stewardship