Photo of the Day

For Memorial Day weekend, we went camping with most of the 8th grade (Julia's class) at Sandy Spring Friends School.  We camped at Cunningham Falls State Park, which is up next to Camp David, near Thurmont, Maryland.  Several of us, including me, did a hike up to Chimney Rock.  There is life during chemo.

A little more about prayer

                I wanted to say one more thing about prayer.  I want to say that I can completely feel the energy people are sending me through prayer, or through “holding me in the Light,” or any of the other things my friends choose to call this activity. I am being prayed for by people of many faiths, and all over the world, and it is a humbling thing.

                Trying to describe it to my Sunday school class, I said it feels like I am sort of crowd-surfing on a wave of energy and support.

                I can ascribe two very real results to this prayer, so far.  The first is that I have not been crippled by fear.  When I was diagnosed, on Ash Wednesday, I was pretty much a blithering mess all day.  I went to our church’s Ash Wednesday service that night.  I had only told a couple of people, mostly family, what I’d learned that morning.  During the service, we were invited to write something we wanted to let go of on a scrap of paper.  These were collected on the altar and burned in a big portable campfire pit.  The thing I wrote on my scrap of paper wasn’t “cancer,” which maybe it should have been!  I wrote “fear.”  And since then, I have been remarkably at peace and “in the moment.”

                I mean, normally, I am a worrier.  I am a person who likes to figure out what is the worst-case scenario and work backwards from there.  With an iffy cancer diagnosis, this would generally lead to constant worrying about, “Has it spread?”  “Has it come back?”  But I can honestly say I have been free of that kind of thinking, for the most part.  I can only attribute this to prayer.  It means I have been able to function, without being a basket case, and use my energy for things like actively getting better.  I have no other explanation for it. This is not my usual modus operandi.

                The other thing that I can only attribute to everyone’s prayers is how generally well I have been feeling.  I have had almost no nausea at all.  This is crazy.  I have had generally very good blood counts, and in between chemo sessions, been well enough to go dancing, eat like a hog, and travel a little. This is not at all what I pictured chemo would be like. I certainly know chemo is not this easy for everyone.  I don’t know why it has gone so well for me, but a combination of lucky genes and prayer seems likely to me.

                Everyone tells me I have a great attitude.  It’s partially true, I do have a pretty good attitude and I’m actively paying attention to that.  But it’s also easier to have a good attitude when you aren’t puking your guts out or otherwise sick as a dog.  I want to thank all of you who are praying for me, because I can tell it is helping me a huge amount.

On our way to our school auction.  Officially halfway done with chemotherapy!  My face is bright red because of the steroids I'm taking.

Are you pissed off at God yet?

                I think a few friends, surprised by how little I’ve been talking about God in this blog, think I must be pissed off at Him/Her.  I am a religious person, a left-wing Christian, and active in my Methodist church. Because of the lack of God talk here, a couple of people have asked if I am mad at the Divine Mystery. Some of my friends who have had breast cancer have told me that it’s only a matter of time before I get really, really pissed off at somebody, probably at God.

                But I’m not there now.  I don’t think I’m immune to that sort of reaction, but frankly most of the news I’ve gotten since my initial diagnosis has been good news.  It would seem sort of inappropriate to me to be mad because chemo hasn’t made me real sick, or because my tumors are shrinking, or my husband is a saint.  If I were to suddenly have to cope with some bad news, I imagine I could be as pissed off as the next person.  But so far, no.

                So why haven’t I been talking about God very much here?  One reason is that it is a really complicated set of questions for me, and I have been working hard, turning them over in my mind.  Another is that I don’t want to offend lots of folks—and the people who are reading this blog are very, very varied in their religious experience.  In the end, though, it’s my blog, so I’m going to have to hash out the religious part my own way, along with the medical and everything else.

                From the beginning, the day I found the lump in my breast, I approached this problem from a religious perspective and with prayer.  I found my lump on a Saturday.  On the Sunday, I took myself to a woman I’ve known for years, a person with a gift for healing who has studied Christianity and healing for many years.  I asked her to lay hands on me and pray for me.  She was very willing to help me.  She basically ordered the cancer to dissolve itself.  I felt like I’d let her down.  When I went to the doctor on the Monday, my lump was still there. It still hurt.  A mammogram on the Wednesday would confirm a fairly well-advanced case of breast cancer.  Where was my faith?  If I had had a faith the size of a mustard seed, I could tell the sycamore tree to plant itself in the ocean, and it would obey.  But the lump was still there, it still hurt, it lit up the x-ray with its evil glow.

                What a lot of nonsense I put myself through for a day or two, there. Of course, it turned out like that old joke where the old Christian is about to be flooded out by the rising river, and he stands his ground and says, “The Lord will provide.” So the river rises, and a guy with a bullhorn calls for evacuations, but he says, “The Lord will provide.” And the river rises, and a guy with a boat comes to help him, but he says, “The Lord will provide.” And a guy with a helicopter comes to rescue him from his rooftop but he says, “The Lord will provide.”  And then he drowns, and in Heaven, he tells the Lord,  “Lord, the only thing I don’t understand…I really thought you’d provide.”  And the Lord says, “You are a stubborn man, you know, I provided a guy with a bullhorn, a guy with a boat, and a guy with a helicopter.”

                So that’s how may it be with my “faith” healing.  I had enough faith to ask for the prayer, but then I went down and got in the boat.  So what if, rather than going and dipping myself in the Jordan River seven times for my healing, I instead have to go to Dr. Smith’s House of Chemo and get absolutely wrecked six times instead. It’s still an act of faith and healing, and God is still providing.

                Interestingly, I’ve gotten little answers encouragement back from the Cosmos.  I haven’t known quite what to make of them all, but I am reporting them here because I treasure them and the people they have come from.

               First, I had an email from a friend from our school.  I think she’s Jewish.  She wrote to me early on in my cancer adventure, to tell me this:

“I have had many friends, many family members fight this battle. I don't really believe in ESP (although I'd like to), but I do believe in my own gut feelings about people, about situations, about what lies ahead. I have a good gut feeling about you, Katie. Our Quaker friends might say it's "that of God inside" of me giving this feeling. I don't know if it's God or not, but I do know it's there. I just hope that the lows don't get too low before the highs become really high again for you. I know the future is bright for you, Katie.”

                Then, I had my mom, who normally worries about me, very calmly approaching the whole cancer thing as if it’s going to be fine. She says she has a “good feeling” about it.  She is totally not freaking out, which is odd and very calming.

                Third, I had another one of the moms at our school, a Christian woman who has been earnestly praying for me, tell me that, “It’s been done.  It’s a done deal.  Healing is there.”

                I told her I felt bad, because I didn’t feel like I had enough faith to claim the gift she was bringing me.  And she basically said, “It doesn’t matter. It’s happened already.”

                I did not know what to make of this, so at the moment, I just burst into tears.  But I did take the story back to my friend, the Methodist healer who I visited at the very beginning.  She listened to my story, and she burst into tears, too.

                I puzzled over this for a couple of weeks.  I have decided to take any such messages of encouragement with as much open-mindedness as I can. Right now, it does seem to me possible that even a situation like this cancer, which on the face of it just sucks, can nevertheless be used to bring insight and, even, blessing in an unsuspected way. So now, I am looking for those blessings. How long it may take to find them, I don't know. But I'm not crazy.  And that’s not just the chemo talking.

"But, are you going to get better?"

                This has been a very tricky question, which I have chosen to ignore here in my blog until I got more up-to-date data from my doctors. Read on, there’s a long-winded explanation first, but some real encouragement at the end!

                From the start, my OBGYN and my three main cancer doctors—my surgeon, my oncologist (chemo man) and my radiologist, have told me we are going for a complete cure. I have better relationships with some of these people (my OBGYN and my oncologist) because I have spent more time with them and like them and feel they are telling me the truth.  On the other hand, to be honest, I feel like I have barely met my surgeon yet, and when I did, I felt like I was getting a boilerplate pep talk.

                Reporters are taught in journalism school, that, “When your mommy says she loves you, check it out.”  So, even if I have up to five learned doctors, counting my family doctor, three of whom I really trust, telling me that I am going to get better, I will check it out.

                There is lots of published information out there if you want to look for it. I and several of my friends, who also tend to be investigative-reporter types, independently zeroed in on some published data that has appeared in all the most recent cancer-patient information guides that you can find at bookstores and online.  Particularly, there are charts prepared by statistics mavens and actuaries that give odds for people with various cancer scenarios.

                 Now, I was diagnosed with stage 3-A breast cancer.  That means the cancer had spread to “several” lymph nodes, but they could not find it anywhere else, including the other breast. If you take that information and look through the books available today, you will find rough guidelines like this:  a woman with “several” lymph nodes involved who gets aggressive treatment will have a 56 percent chance of being cancer-free after five years.  Unfortunately, that means a 44 percent chance of not being cancer-free in five years.

                This was what I found in my research.  My friends who began researching the question independently came to similar numbers.  As a result, a subset of my friends started talking to me and trying to prepare me for what we feared might become a rougher, perhaps shorter journey than we had hoped.  In a nutshell, I have had in the back of my head this scenario:  that, even with really aggressive chemotherapy, surgery, and radiation, we might not be curing me.  Instead, we might only be buying me extra time. For an illustration, I thought I might in fact, turn out to be like the case of Elizabeth Edwards, who bought extra time through treatment, but in the end turned out to have cancer that spread to her bones and killed her, ultimately, a few years later. 

                Emotionally, this got tricky.  Most of my friends, relatives, and community-wide amazing support system are with me in my “I’m going to kick cancer’s ass” mode, which I am in, myself, most of the time.  But there are a few friends out there who have run the numbers with me, who know this is not a done deal.  Consolidating this information in my own brain has been a process. I have personally now gotten to the point where I am not wondering if I will see the bulbs Matthew just planted bloom next year; I will.  I am no longer worrying about when if I will make it to 50, a year from this July.  I will.  But when I stop to wonder if I am going to make it to Julia’s wedding or to hold my first grandchild, I can turn into a weeping mess of Jell-0.

                So, I promised you good news if you read to the end of today’s posting.  Yesterday, I had my 3^rd chemo treatment, which means I am now halfway through!  Yay me!  In the course of that treatment, I got to have a long consultation with the good Dr. Frederick Smith.  He is my oncologist, my chemotherapy guru, and one of the three people in charge of saving my life save my life, along with my surgeon and my radiologist. His is the fine art of poisoning me thoroughly every three weeks, but not quite killing me. After he answered all my lesser questions (“Can I take vitamins?”  “Why are my eyes all weepy?” and so forth) I brought out my big one:  Are we curing me, or are we buying me time?  And do I only have a 56 percent of being cancer-free in five years?

                There was kind of a two-part answer.  The first good news was from the physical exam he did.  He confirmed that the tumors are getting smaller.  The drugs are working. I told him I had thought so, too, because they seemed smaller to me and were much less painful.  He laughed that I seemed so surprised.  “That’s why we’re doing all this to you!” he said.  But he was clearly pleased.

                The second part was when he explained the numbers my friends and I had found in the literature.  He said not to apply them to myself.  The 56 percent number was well, well too low, he said, although he did not give me a number with which to replace it.  That new number does not yet exist.  The data are being generated now.

                The data that appears in the books we were reading were correct, he said, but very out of date, at least ten years old.  In addition, they refer to the first generation of chemo drugs that was used.  We are now using the third generation of chemo drugs, and it is thought that their success rate will be some 20 percent better.  In addition, he said, surgery has improved immensely over the last 20 years. 

                My husband, John, who was sitting there, is a trained actuary and statistician with degrees in the fields from University of Cape Town and Oxford University.  He made the point that the numbers also included persons plenty older than me, who may have had other major illnesses such as heart disease and diabetes, whose results would have skewed the whole thing but was not obvious from the way the data were reported.

                So I asked Dr. Smith if we were just buying me time, or are we trying for a complete cure?

                “Cure,” he said, almost belligerently.  “We’re PLANNING on it!”

 Two of the wonder nurses.  The other two were busy helping someone else.

 Dr. Frederick Smith, who is one of the three people in charge of saving my life.

Breakfast this morning.  With a yogurt chaser to keep it from eating a hole in my stomach.

Temporary insanity?

                We are now talking about putting me on Ritalin.  The “chemo fog” you hear people talking about has turned out, in my case, to be very real. I am not playing with a full deck.  Light’s on, but nobody’s home.  A few fries short of a Happy Meal.  A lost ball in high weeds.

                I forgot to go to a meeting yesterday.  I lost my keys at church…for the second time this week. I had to throw out most of a bag of groceries because I forgot to take them in the house and they sat in my van all day in the sun. And although I used to be the Queen of Multitasking, I really have to focus on one thing at a time now, or I get all confused and cranky.  For example, let’s say I’m trying to type an email and some hapless child or husband wanders through asking me what soccer field we will be playing on today or what we’re having for dinner, and I lose my place and have to start over and I snap his head off. Everyone is bewildered. I used to be able to conduct four conversations at once.  Now I just forget what I was talking about with everyone, and then I get growly.

                There are a bunch of reasons the brain is giving up on me.  First, the chemo drugs are really toxic, and they are killing my brain cells.  Second, I am getting much less sleep than I need, because the steroids and such keep me wired a lot of the time.  I get up at 3:30am some days, ready to go, and you never get that sleep time back.  And, third, the drugs have sent me over the cliff into menopause, in a pretty sudden and graphic way.  A triple whammy.

                When I first met my oncologist, the good Dr. Fred Smith, he said he was sorry, but I was going to lose my hair, and there was nothing he could do about that.  Then he asked me what else was worrying me about my treatment?  And I told him I truly didn’t mind being bald for months, or even being nauseous for months, if it came to that.  I told him I wanted to hang onto my brain cells.

                Six years ago, my oldest brother was diagnosed with colon cancer.  He went through hell.  He had surgery, chemo, and debilitating rounds of radiation.  He is now cancer-free.  But the whole thing took a toll on his brain.  He was forced to retire from his job of many years as a railroad engineer, because he truly wasn’t sharp enough to be trusted with a train full of people anymore.  And you could tell, when you talked to him, that some of his sharpness was just gone.  Now, after a couple of years, some of his old self has come back, but I think he would be the first to tell you he never got back to normal.

                This is what I was terrified of, and it is what is happening.  I am losing brain cells left and right, and I am afraid they will never come back. And unlike my hair, for me, my brain is near the core of my identity.  A “smart person” is who I am.  Really, I used to be a smart person, before I had children!  I got straight A’s in college, and I was taking classes like Physics and Greek.  Hell, I was a Rhodes Scholar.  In sharp contrast, I am now a complete space cadet. I read things wrong.  I forget entire conversations.  I write stuff down, and I lose the paper I wrote it on. I still have interesting ideas, but they are not organized in any meaningful way.  I’ll get an idea for a painting, or a piece of jewelry I’m working on, and if I don’t write it down immediately it’s gone.  Gone. File not found.

                This is bothering me much, much more than the baldness or even the idea of losing a breast. They can make me a new breast, a nicer, perkier one.  We have the technology…but the brain cells, they don’t come back. Friends who have been through this tell me, no, they never do come back, not like they were.

                Now, Dr. Smith says not to panic. He says that even in the last couple of years they’ve been researching this issue of “chemo fog.”  They’ve decided it’s a very real problem.  (Note to Medical Science:  “Duh!”) There is research now that shows Ritalin might be very helpful to a person like me, at least for brain-organizing executive functions.  But I have my doubts.  There are trade-offs. How many psycho-tropic drugs can a person take at once?  Do I take a sleeping pill, and hope that getting some sleep helps, or do I go for the Ritalin?  Do I try to do both?  If I do, do I become a drugged-up sleepwalker?  Generally speaking, I don’t want to be any more stoned than I already am.  And if the steroids have made me a little wacky, at least that is a fun, interesting kind of a kind of wackiness. It’s a little edgy.  I’m having some vivid dreams, some weird energy. Sort of like I imagined what bipolar disorder must be like. It’s very interesting from a scientific and artistic perspective.  Not everyone gets to be temporarily mentally ill. It’s very, very eye-opening. I get now why the Beatles and others found creative inspiration from taking LSD and such.  If I have to take these badass drugs in the name of saving my life, maybe I should just buckle my seat belt and enjoy the ride? If I knew I could get off the roller coaster at some point, it would be easier to decide.

First draft, bucket list

Did I get your attention there?  That was mean. I'm sorry.  I am not writing a bucket list because I have learned I am kicking the bucket or anything.  I haven't learned any such thing, and I still hope to not be kicking the bucket any time soon.  But my mental health advisers say that producing a bucket list is a healthy thing to do for anyone, but especially a cancer patient.  The thinking is:  cancer patients can get so "in the moment" on the fighting-cancer front that they forget that there is a future beyond cancer.  Doing a little long-range goal setting is a forward-looking, life-affirming thing. I hope my own personal cancer-fighting project is wrapped up by October or so.  What else do I plan to get up to this year, maybe next year?  Here is my first draft:

First Draft, Bucket List

(in no particular order)

--Write more.  Produce at least one story that is beautiful.

--Dance more.

--Do at least the lowest-level ropes course at the SSFS Adventure Park.  (Seriously, I have acrophobia) peeing myself.

--Learn to fly fish.

--Be in a SSFS Community Play.

--See the Cubs play at Wrigley.

--Take some sort of meaningful action regarding the United Methodists' position on gays, lesbians, bisexuals and transgendered persons.  Our current position is not acceptable.

--Visit:   Greece.  Alaska.  Israel.  And do a walking safari in Kruger Park.

--Climb Kilomanjaro with John.

--Track down certain people and repair relationships.

--Make a career development plan and do it.  Part 1: Decide what I want to be when I  grow up.  Part 2:  Become that thing.

Scarred for life

We may have found the reason my right hand wasn’t working properly for a while last week.  (For a couple of days there, I could not write or make the fingers on my right hand behave.  It was very strange.)  Well, it turns out that during my last IV chemotherapy treatment—which was two weeks ago now—some of the nasty chemo drug Taxotere leaked from my vein and into the surrounding tissue.

                I learned this today when I took myself back to my oncologist with a really ugly burn-like lesion on my hand.  The lesion only appeared Monday.  I thought it was a mosquito bite, at first.  Then, as it got bigger and uglier, and pretty painful, I started thinking it might be a spider bite.  But when I put two and two together, and realized this was the spot where the IV line had been inserted, I got scared and went back to the doctor.

                The oncology nurse could tell from the color of the burn which drug had leaked during the IV.  The good news, she said, is that it wasn’t the adriamycin.  If that had leaked, we might be discussing reconstructive surgery right now.

                We do have to try to figure out how to keep this from happening again during my last four chemo treatments.  Some people’s veins are more likely to leak, and I am now told I am one of them.  Usually, they would now do surgery to install a “port” for future drugs, in my chest.  But, because of the type of surgery I’ll be having in July, they don’t want to install a port in my chest.  So we may try to have to find veins higher up in the arms or something.  For me, all this has just upped the stress ante considerably.

                My nurse said that since it was “only” the Taxotere that leaked this time, there’s not much to be done about my hand.  She said the scar will darken from red to brown, but it will never go away. This actually bums me out.  I used to have beautiful hands. Well, hell, I used to have nice hair and fine boobs, and long eyelashes, too.  That’s pretty much all my favorite body parts trashed, fairly systematically.  Yes, I’m whining now.  I feel like whining today.

Worries that have not materialized

It is Monday, May 2, and I am now a third of the way through my six-session course of chemotherapy! I think the second session, which is now ten days behind me, hit me harder than the first, in terms of screwing up my blood counts and so forth.  Never got the mouth sores or any of that last time, but I sure did this time. If, as friends tell me, the net result gets harsher each session, this could get interesting before we are done. A week ago I could do 45 minutes on an elliptical machine; this weekend, I could not last five minutes.  My nose is actually bleeding this very moment. The steroids also caused some interesting muscle problems this time.  It was as if someone had shortened my hamstrings a couple inches.  I had to spend a half an hour each day, walking very slowly on a treadmill, to stretch my leg muscles back into their normal configuration.  And more weirdness, on Wednesday, when I went to the grand opening of the new Harris Teeter grocery store, and I tried to fill out the form to get a Harris Teeter card, I could not hold a pen well enough to write my name.  Very, very strange.  But today I am back up to 45 minutes on the elliptical, and I can totally write my name again. The powers of the body to recover are truly amazing.

                Today I am feeling so much better than I had for the last week or so, I am almost giddy.  I can read!  I can write!  I remembered to take the groceries out of the van! I am counting my many blessings.

                One thing I am noticing this week is how many of the worries that slammed me the week of my diagnosis have completely failed to materialize.

                Miracle #1:  My husband.  As they say, this is a whole nother subject. But he is the best.  Who knew he had a thing for bald chicks? The day you find out you have breast cancer, you go home and Google things.  You start picturing yourself with one boob, or maybe none, and no hair, and mouth sores.  You wonder if you are ever going to feel female again.  Short answer:  yes.  Yes, you are.

                Miracle #2:  My friends.  I was diagnosed with breast cancer on Ash Wednesday.  I spent the day by myself, digesting my new status. I felt like a walking billboard for death.  I thought as soon as I told people, I would start repelling them.  I felt like I was the ashes on everyone’s foreheads at church that evening.  I was a walking reminder of mortality and death. I particularly worried that a few of my friends at school and at church, who had lost spouses to cancer, would be made hugely uncomfortable by my very presence.

                The first person I ran into that day, to whom I babbled my whole story, was my friend Ted.  I remember telling him that the one thing that would really mess me up would be when my friends started hiding from me. I was terrified by the idea.

                It never happened.

                I think I can think of two people I seem to have made really uncomfortable with my news.  Of those, one is an elderly woman who remembers people dying in agony of breast cancer in the 1960s, I believe, so I can understand where she is coming from.  Other than those two persons, friendship has not fled; it has grabbed me in a bear hug.

                Seriously, in the last six weeks, I have had more great hugs than in my whole previous life.  I have said “I love you” to people who needed to hear it, and people have said it to me.  I have gotten back in touch with friends and cousins who I had not heard from in years.  I have gone out for more beers with people!  I have drawings on my fridge from children who love me, and casseroles in my freezer. 

                I love you guys.

                

Photo of the Day

This is a picture of one of my three main chemo drugs:  adriamycin.  It is nasty, nasty stuff.  There is a lifetime limit of how much of this drug you can have. All three of my main drugs are themselves carcinogenic, which, as they say, is the least of my problems right now.  This one also causes congestive heart failure. We will cross that bridge if and when we come to it. Even handling this stuff is a work hazard for my nurses and oncologists. Sorry about the blurriness of the photo; I had a needle in my good hand and was stoned out of my tree when I took this picture!