Embracing the suck

Listening to NPR the other day, a man returned from deployment in Iraq was talking about an expression used in the military.  There are plenty of them, some having made it into the civilian lexicon a generation ago, unbeknownst to most people who use them.  A favorite of mine is snafu.  Most of us have used this expression to describe a scenario in which things do not go as expected, or when an expected routine veers off course.  I read somewhere that snafu was coined during WWII by soldiers, and that it's an acronym that means Situation Normal: All Fucked Up.  I could be stating the obvious, forgive me if I'm the last person on earth to learn what snafu stands for.  For soldiers fighting I am sure this is an apt description of any given moment, the default mode being a complete train wreck.  In the novel I'm reading right now a young American soldier in Iraq describes fighting the war as the millisecond between the knowledge that your car is going to crash and the crash itself, but lasting for days at a time.  I will not compare my situation to fighting a war, but I will say that during cancer treatment the heightened feelings and reality of physical chaos, emotional bewilderment, and panicked alarm made me think often of snafu.

Back to NPR last week.  I have a new phrase that works so well for so much of cancer.
Embrace the Suck.  When I worked on boats, the command "Suck it up and deal" was used by everyone to each other all the time.  Basically, it's hard, sometimes unpleasant, chaotic and occasionally terrifying, but too bad.  Deal with it.  Again, I am not comparing this to fighting a war, as this situation was actually voluntary, an adventure, and often an extremely good time.  Hearing the guy on the radio talking about "embrace the suck" made me smile, and the reader and amateur writer in me loved the distilling of the expression familiar to me into its essence by a few words.

"Embrace the suck," according to the radio story, is more involved than the bravado one summons to power through adversity.  It is also about manning up in a negative way, not dealing with PTSD and

other issues facing soldiers coming home.  He was saying that it is desirable in the military to ignore the feelings generated by the trauma of fighting and bearing witness to unspeakably horrible things.  I think in the realm of cancer I have done both of these things and while the latter may have been a therapeutically unhealthy way of dealing, it is one of the ways in which I dealt, and have been able to get through it and spit out the other side (knock on wood).  Perhaps at some point I will want to more directly address the fucking terror of it all.  And I have no doubt that that would be a boon to my long term mental health, an investment into the future of my too logical brain, but for now, Embrace the Suck!

Rare medical update

I have never liked discussing my diagnosis, and have spent as little time as possible contemplating it, as doing so has generated a fair amount of anxiety.  As the chemo fog has begun to lift, I have realized it is time to ask Dr. Raish some direct questions about all of it, come out from under the veil of deliberate naivete.  The reason for my squeamishness has been a number, and that number is 3.  The stage of my cancer at diagnosis was 3a, which is determined by tumor size and lymph involvement.  Specifically my cancer was T3N1 - tumor 3 and node 1.  For me the difference between a 2b and a 3a was 1.6 cm of tumor length.  I learned today in speaking with Dr. Raish that while with many other cancers these staging numbers mean more dire things, especially that pesky number 3, with breast cancer the staging is no longer the driver in treatment or prognosis unless it is metastatic (mine was not).  While a stage 3 lung cancer or melanoma is pretty dire, with breast cancer the biology and other things drive outcome to a greater degree.  The biology includes whether the cancer is hormone receptor positive or negative (mine is estrogen receptor positive) and whether it is HER2 positive (mine is).

So... I asked Dr. Raish a bunch of questions and here are the answers, as best I can remember them.  

My current status, which I have not known what to say about to people brave enough to ask, is cancer free.  While no scan can see a single cancerous cell, as far as what the doctors know about me, I am cancer free.  The term cured is not used until at least five years have passed without recurrence.  I asked him about what I saw as frighteningly small numbers on the pathology report describing the size of the margins.  Dr. Raish (Mr. Data and Statistics, I love this about him) said that with margins it is a yes or no prospect.  Either the margins are clear or they are not, the distance is irrelevant.  So, my margins were clear.  This may have been due in part to the neoadjuvant chemotherapy I had, which is a fancy way of saying chemo before surgery.  He and Dr. Garreau both said that more and more in cases where it is known that chemo will be necessary (for example a positive lymph node biopsy, like I had) the neoadjuvant option is becoming the norm.  The advantage is the likelihood of a better surgical outcome, like clearer margins.  Also, doctors can establish how effective the chemo is in treating the cancer.  With mastectomy first it is not known, unless there are tumors elsewhere, to what degree the chemo is killing the cancer.  An aside, as a patient, the neoadjuvant chemo was both good and difficult.  Good, because it was the worst part, and I got it done.  Difficult because mentally carrying the cancer around with me for five months rather than have it cut out right away was challenging, given that the definitive information about whether it was working would not come until the surgical pathology was done.  In my case the chemo worked very well and much of the cancer was gone by the time of surgery.  

The anti-estrogen therapy I will have for five and perhaps ten years cuts my risk of recurrence by about 45%, Dr. Raish and his computer brain told me.  Herceptin further reduces the risk of recurrence.  (While HER2 positive cancer is a more aggressive cancer, the development of Herceptin, a targeted therapy, has been a miraculous game changer for those with the HER2 marker.)  My lifestyle, which includes a healthy diet and plenty of exercise, further reduces the risk of recurrence (though this is shady to me, as it doesn't then make much sense that I got cancer in the first place!).  

When Jon and I first looked at a breast cancer brochure it said, in very simplistic terms, that for stage 1 9 in 10 women are alive in ten years, with stage 2 it was 8 in 10, and for stage 3 it was 7 in 10.  This was not fun for me to read or to contemplate so I solved that conundrum by doing the denial thing.  Today my goal was to have Dr. Raish tell me directly what my chances are, what numbers apply and what tweaks them in one direction or another.  I did ask for a number, and after going over all the above analysis with me he said my risk of recurrence is about 10%.  Which made me happy, very, very happy.  I am glad to understand the limits of staging in the case of my cancer, and the other factors and data that matter.  I am glad I have this computer-for-a-brain oncologist who can pretty much cite the specifics of three or four relevant studies in response to any question I might ask.  

So...  cancer free and 10%.  A pretty good visit with the doctor.

Epiphanies, the ones that come and the ones that don't

In the years after my son was diagnosed with Asperger's, I had an epiphany.  I realized that my dad and both of my brothers seem to exist on the spectrum somewhere, albeit in very different ways, which makes perfect sense, as autism has a strong genetic component and manifests predominantly in boys.  I also learned about the shadow tendencies of autism.  These are typical autistic traits in a non-autistic person, and it can be common for non-autistic parents and siblings of autistic children to realize that some of their own idiosyncrasies are these very shadow tendencies.  For instance, I cannot stand to feel labels in my clothing, and cut them all out (classic Aspergian sensory issue).  Unlike my son, I enjoy eating foods combined with each other, but must have them in the right ratio.  I tend to wear the same clothes repeatedly because I do not like the way many items of clothing feel on me.  I appreciate and need structure and routine.  

I have wondered lately whether my inability to have some sort of giant spiritual epiphany over my cancer is the result of one of these shadow tendencies.  Aspergians tend to be extremely literal and also logical.  I sense that regarding the cancer, I am being both of these things to a degree that limits my ability to look at any of it in a spiritual way.  Granted, I am processing this time in my life without a therapist, or workshops in emotional processing, or a road map of any kind aside from conversations with other cancer survivors, which I value more than I can say.  I am not advocating this type of approach at all, and I suppose it is much more a passive, lazy non-approach than a conscious decision.  

I have been asked whether I have a new lease on life, or a newly vigorous approach to living.  I honestly can't say that I do.  I am extremely happy to be alive, but isn't everyone?  I want to live a long life, meet my grandchildren, and die of natural causes in old age.  Doesn't everyone?  Though I am having this experience and must face questions of mortality in a very visceral way, I have not felt that my desire for life is more informed or eager than anyone else's, or than my own before the cancer.  I guess the difference is I was not forced to think about it so much.  Here is where I think I may be limited by logic.  I remember when my father was making decisions about treating his prostate cancer, and how I was frustrated by his seeming lack of emotion and Spock-like approach to the whole thing.  I realize now during my own cancer treatment that I'm approaching it in a similar way.  

I don't know whether I should be frustrated by this or accepting of who I am and how I'm dealing.  My default mode is to be frustrated with  my own approach, so maybe in the spirit of being happy to be here, I'll practice acceptance instead.  Watching a video like the one I posted yesterday, or reading other people's blogs or the cancer magazines in the radiation waiting room, I sometimes wonder if I am missing some synapses, the ones that might connect this truly terrifying experience with a search for meaning or emotional response.  On the other hand, I am doing well, I am functioning every day, my health seems good, my body is processing all the poisons without too much trouble, my brain function is returning.  And, finding myself constantly forced to explore whether metaphorical glasses are half empty or full, I have been erring on the side of half full.  So, atheist that I am, I lean towards concluding that that is enough.  

The gift

http://www.huffingtonpost.com/stacey-kramer/finding-a-gift-in_b_2877772.html

This video is only three minutes or so, but worth watching.  
It is where I am trying to be, but the honest truth is I am not, 
at least not yet.  Still, this is a really nice, really short talk.

Van people

I have been riding the cancer van for nine days now.   Only 19 to go!  The group has been pretty consistent, though everyone but me is almost done, so I will be the last of this current crop to be riding.

Judy "graduated" yesterday, in van people parlance.  She didn't talk much, but I know that she wore a different hand knit cap every day I saw her.  I believe she has knit enough hats that she probably wore a different one to each of her radiation days, with the occasional matching sweater.  She had/has (I really have no idea what tense to use) some sort of lung cancer that involved(s) her esophagus as well.  When she came out of her final treatment yesterday she had a mesh mold of her head that she wore to keep her perfectly still.  I don't know if that means there was or is cancer in her brain or not, and I did not ask.  She said she was going to turn the thing into a planter.

Kay just started riding.  She has cancer in a lymph node in her neck.  I don't have better information than that about her cancer.  She lives at the senior apartments a couple of miles from my house.  She has told me that both of her sons have cancer as well, one in the stomach that was stage 4 and has returned, and the other recently found out he has cancer in both lungs.  She seems like a good sport but sometimes reveals just how scary it all is.  Both "boys" served in Vietnam and she has wondered aloud more than once whether maybe Agent Orange had something to do with their current cancer situations.

Janet had a lumpectomy with radiation, estrogen positive, stage 2.  She lives all the way up the peninsula and doesn't seem to worried about her prospects.  We have chatted, and I am aware that she had a nephew who died of brain cancer as a teen, and that her sister had uterine cancer and has been cancer free for 13 years.

Grace lives in the same apartment as Kay.  I believe her cancer is uterine.  She has a niece close to the radiation facility and is going to stay there for the remainder of her treatment.  I have not talked to her very much, as most of the time she rode all the way in the front seat.

The guys in the back seat are my predominant chat mates.  Mark is a 9th grade English teacher with whom I have been somewhat aquainted through Lucy's Books.  He was fishing with a friend when he coughed up some blood, and subsequently found out he has/had throat cancer.  It was surgically removed along with a cancerous lymph node nearby, and he is winding up his radiation treatments next week.  I'm glad for him, but will be sad to see him go.  We have had some great chats about books, of course, as well as our kids, our parents, our adventures.

Mike is from northern Montana, near the Canadian border.  He came to the peninsula to visit his sister for Christmas, had some pain and coughed up blood, and finds himself still here being treated for throat cancer as well.  His is on both sides of his throat, and he has not had any surgery.  I try not to think about whether that is a good or bad sign.  He has weekly chemo and is closing in on the end of seven weeks of radiation.  He has a feeding tube and will continue to for at least two more months.    He, among all of us, looks most affected by cancer.  From his stories I think he did physical work.  He talks about hunting and fishing.  But having lost 40 pounds he looks pretty frail.  It is hard to imagine him before, but I try to.  He coughs a lot, and often has to spit.  His voice is pretty raspy, and some days he is just curled up back there trying to sleep.  I know from either overhearing or
participating in conversations with him, that he left home at 15 after threatening to kill his father if his father hurt his mother again.  I know he was educated a half a mile from my house at Tongue Point Job Corps.  I know that the last huge-style concert he went to was Led Zeppelin in the seventies.  I know he has a brother in jail and a brother who is dead, because of meth.  I know he has not done meth himself, and doesn't "understand that shit."  I know he has a huge gun collection, and woe to any invader of his home.

I have to say, I truly like each and every van person.  We have been passing three hours together five days per week.  As surreal as it all is, every day I am aware it could be a lot worse.  And in addition to the conversation, I am reading my third book already on these rides.  In the usual spirit of counting things, we have swerved to miss one deer, and today we saw a coyote at Gnat Creek.  We never know each day whether there will be a new rider, and oddly pretty soon for those people I will be the veteran.

Numbers

Having cancer seems to involve a lot of counting.  During chemo I would count off days, weeks, three-week increments.  I was counting down six rounds of three weeks.  I have since been counting weeks since my surgery - six tomorrow- as I am supposed to be allowed to swim after eight weeks.  I have had five radiation treatments and have 23 left to go.  I have had nine Herceptin infusions and have eight to go (also in three week intervals, another thing to count).  After the radiation I will start taking Tamoxifen for five at least and more likely ten years.  I will probably stop counting that pretty quickly.

I have been getting ready to assault Dr. Raish with questions I avoided during chemo and before the pathology report.  And those involve more numbers.  I am ready to know what my status is now, what my chances are for recurrence, what the signs of recurrence might be, how many years it will take to possibly feel like the cancer might not return.  I have remained stubbornly and foggily oblivious to these numbers up until now, but my head is telling me it is time to know what my treatment is netting me in terms of a future.

Happily, I was able to start running again last Friday.  Today I ran for the second time.  It felt fine.  The fake boobs seem to be staying in place with the help of a pretty tight running bra and nothing seemd bothered by moving from a fast walk to a very slow jog.  There is a 5k fundraising run for breast cancer research on Saturday that I think both kids are doing, and maybe I will be ready as well.

A well oiled machine, and other stuff

I never thought I would be privy to how a radiation clinic did its work.  (Kind of like how I never thought I would be a plastic surgery patient, but I am glad I am.)  It is a well oiled machine.  We arrive by van from the far reaches of the north Oregon/south Washington coast.  By turns we are called back.  I walk down the hall, choose a changing room, grab a key and my own designated bathrobe (for real).  I change into my robe, from the waist up, in my case, and take another seat.  I am then called into the treatment room.  The techs are amazingly kind, not corny or overly solicitous, just kind and friendly.  My treatment is already programmed in, so they set me up on the table lined up with my three tiny tattoos (which they gave me during the set up appointments, so the treatments would be quick and smooth).  Six or so minutes later, I get dressed, retrieve my stuff, hang up "my" robe, and read or chat with my van mates while we wait for everyone to finish.  This all happens more quickly than one might think, as there are at least two, if not more, treatment rooms going at once.  Today I learned that Thursdays are "doctor day," where everyone has a regular visit with Dr. Kim, though he was quick to ensure that I knew that I can grab him on any day if I have questions or concerns.  I can't believe I am doing this every day, but it feels like an excellent place to be if your own personal roulette wheel ends up on the cancer number.

Also, throughout this whole experience I have received many kindnesses, in many forms: good company, food, chores done...  And also some gifts.  One day in the fall I found an original Petra Mathers painting on my porch, that she had left there herself, not sure whether I was wanting company at the time.  I will treasure it.  I am saving the stack of sweet cards I have received from distant friends and family, and those close by as well.

A couple of days ago I received a most original "cancer" present.  A fresh new pair of muck boots.  The friends who sent them, Pete and Sue, have lived out here so they are well aware of the climate (wet). The card said, among other lovely things, "Boots seemed like just the right way to acknowledge the long slog you have been on."  Frankly, I don't know how to follow this sentence with any better end to this post.  I will wear them and smile every time.