Saturday, March 30, 2013

Van people, redux

The van is a lot different than it was when I started.  There are three of us riding now, though I have no idea whether there will be others next week.  One does not know, day to day.

Smoking Barb sits in front of me.  She had a lumpectomy and is a few weeks behind me on the radiation.  I mean her nickname (my own, private nickname) in the most inoffensive way.  I have no truck with her for her habit.  Mike (throat cancer, back seat) was struggling with smoking.  I know it is just plain hard to give up addictions.  There is no judgement on my part.  But the fact that Barb walks the parking lot smoking after her treatment and seconds before climbing back on the van is why I call her Smoking Barb.  My only wish is that she was a little more conscious of how bad it sometimes smells in that moment of being shut in the van with her.  Even a mint would go a long way!  Anyway, because our treatments are so few and we have such a quick turnaround right now, I feel like Barb has less time to smoke, which is better for me, worse for her.  I brought her up at dinner  one night and both my teens were adamently opposed to me talking with SB about the issue.  Granted, there is not much harder topic to bring up with another person, especially one you hardly know, than their smell.  I had an employee once who I actually fired because she smoked outside then walked right back into the book shop.  Not a good smell for a book shop.  It sucked though, because no matter how little I was judging her for smoking, it all seems pretty judgemental when trying to address it.  Back to my teens.  They in all their teendom said I would offend her no matter what (quite possibly true), and in all their ultra-teendom thought I would really embarass myself by bringing up the topic.  In the end, I don't have the energy to ask her to give up her guilty, smelly, unhealthy pleasure.  We on the van are all dealing with a lot of shit, including her, and it is not my place to compromise her dignity.

Speaking of dealing with shit...  Another Judy started riding last week.  I took the bench behind her at first, but moved next to her when I realized she was talking to me non-stop and I could not hear a word of what she was saying.  Judy is 72 and dying of lung cancer (diagnosed two Augusts ago) that is all over her brain now.  She seems pretty damn matter-of-fact about it.  Today is the yard sale she has been working on for a while.  She told me she agreed to the radiation because it could give her some of summer and gardening.  Otherwise she was never willing to have chemo; she says it is poison (of course it is! That is the point of it!) and is suspicious of "big pharma's" motives...  Judy talks... a LOT, due to the massive amounts of steroids she is on.  Given what my very low dose prednisone does, I am not at all surprised that she talks non-stop.  I figure the least I can do is listen.  I like Judy, though some of her topics would definitely preclude me from appreciating her much in another non-van life.  One day she was off about teachers and the schools, you know, are teachers still underpaid, I mean, do they "think" they're underpaid?  I did gently explain that in the realm of professionals with the level of education teachers have to have and constantly maintain and upgrade that yes, they are underpaid.  I also gently explained that our schools DO use what money we get efficiently, that it quite simply is not enough.  Yesterday it was children in restaurants, ruining her meal...  you get the picture.  However, being van people together makes it all a bit different.  I am amazed by Judy, matter-of-factly deciding how and when to let her life go.

We are strange bedfellows on the van.  I am not really looking for any profound connection among all of us.  Obviously none of us wants to be there, and we are all gritting our teeth and counting the days (four more for me!).  At the same time, I believe we are all very grateful for it.  I know I could get to Longview without it day after day.  I am relatively young and healthy, and if I got tired of all the driving I have a husband and friends that would have helped (I had several friends offer to do driving with me, and though I haven't mentioned that here, I am still so touched and grateful).  Still, it is a fantastic and helpful service, and is saving me gas dollars as well as more fatigue and logistics.  Observing the other van people for five weeks now my objective assessment is that many of them would not have been able to get to Longview for radiation day after day without it.  Some folks have trouble just getting in and out of the van.

(An aside: someone on NPR was discussing social safety nets and addressed the idea of the private, as well as public, safety nets that some people have, though may never define them as such.  I realized right away that I have an amazing private safety net.  I know that if medical bills became too large, we would not lose our home, because of our families.  I know that friends have not hesitated to step in and help us, with food, etc. throughout my cancer.  In all this I had one potential insurance snafu and realized that because of our safety net I would not need to access, in fact I felt I would be remiss to access, the financial aid services of the hospital.  Because of my excellent health insurance safety net though, the snafu was resolved.  I just want to acknowledge my gratitude and my awareness that in many ways I am so, so lucky.)

Someone, I can't remember who, told me that Dr. Kim (the radiation oncologist) was working in Portland and went to Longview to set up a radiation oncology service clinic for people "between the cities" to get radiation.  He seems like a unique guy.  I believe he actually rode around the route with the van driver to set up and plan this amazing (no cost) service so that it would be easier to get radiation treatment.

As I have four more radiation treatments this is my last Van People.  Unless of course, an irresistible character or two climb on next week.  After Thursday my cancer treatment is sort of, officially, finished, aside from the Herceptin infusions (seven more) and years of Tamoxifen pills .  I say this with a grain of salt, of course.  I could have called this blog, You Just Never Know What is Going to Happen, since I'm sorry to say, that is the real takeaway.  I think the van people would agree.

Friday, March 29, 2013

A tenuous state

I made a mistake yesterday.  I followed someone's link from facebook to a cancer blog that turned out to be a bunch of beautiful photographs of someone's wife as she fought and then died from breast cancer.  I cannot tell you what a bad idea looking at cancer blogs is if you are in my boat.  Most of them anyway.  Any tenuous non-worrying state I had been in since the nice prognosis report instantly vanished.  I knew that that state was tenuous, as my reality is that having this cancer means I will always, always be worried, for as long as always turns out to be.  Even with the good news and mostly positive outlook, no one knows what will actually happen.  I guess that is everyone's true state, only cancer people experience it in our faces, in quite an ugly and terrifying way.  So... lest you thought I was done worrying, I'm here to report that that will never happen, and that clicking on the wrong link is enough to cause a complete panic attack.  Sad but true.  I feel sorry for my oncologist, who bears the brunt of it in the form of a new set of neurotic and irrational questions every time I see him.  He is a patient man.

On another note, I started swimming this week.  That was not so pretty either.  It felt really good, the way swimming always does, but seems to be a whole new endeavor.  My form stinks and my arms are pretty different than they were.  I think that the muscles of my chest are attached to me differently than they were before and so feel odd.  The good news is, the second swim went better than the first, so maybe progress will be quick.  I did experience some additional swelling for a couple of days after both times, so am waiting a few days between swims for now.  At times I cannot believe that the person I am chose to get the implants, as the healing really is so much slower than it would have been.  I have always been a pretty no frills person, so am a little surprised at times that I did the reconstruction.  On the other hand, if I try to imagine having nothing there (my understanding of mastectomy is that you do not come out what we think of as a"flat chested" woman but actually more like concave), I know I would be totally self conscious and hunched over.  I also know that the idea of prostheses in a bra sounds nightmarish to me (bra being the operative nightmarish word there).  For the long term I believe I made the right choice, though at times it does seem like more vanity than I generally exhibit.  It's funny, I really never thought I was vain.  I never wear makeup, I barely put on earrings, I wear Levi's jeans most days; but I knew when I went bald that I am a little more vain than I thought.  I knew when I was morbidly self conscious about my lack of eyebrows, that having a concave chest might be more difficult than I could imagine.  I had five long months to consider my options because of the neoadjuvant chemotherapy, and what I came up with was that the reconstruction would, simply put, make my daily life easier, more convenient, and though it seems counterintuitive, give me less, not more to think and worry about.  The price is the long healing.  So, I will go to the pool and pay it. 

Sunday, March 24, 2013

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!

Wednesday, March 20, 2013

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.

Tuesday, March 19, 2013

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.  

Monday, March 18, 2013

The gift

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.

Friday, March 8, 2013

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.

Monday, March 4, 2013


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.