Thursday, June 20, 2013

Chapter 2

I continue to do my best to be grateful... Grateful to be alive, that my treatments were straightforward and without complications (until now), and grateful to have the privileges that have allowed me to go through this, heal, and process without a whole lot of situational worry.

That said, I have to keep discussing the complications, which really are a total surprise.  It seems funny to me that I powered through chemotherapy, a bilateral mastectomy, and radiation treatments and never felt much worse than I have felt off and on this last month.  And all because of some little pills.  It is astounding to consider the brain, and how easily it can be altered and manipulated.

Six weeks after taking my first Tamoxifen pill I sat down with Dr. Raish to discuss options.  Actually taking those daily pills only lasted three weeks (refer to the prior blog post to read more about that).  I knew I would have to take some kind of anti-depressant medication to be able to get back on Tamoxifen, so I left with my prescription, oddly looking forward to taking that first pill, and starting on the road back to productive recurrence prevention.  I don't know how many times in this blog I have stated that nothing is simple or predictable, but... nothing is simple or predictable.  An hour after I took the first dose of Effexor I was miserable.  Very painful stomach, very painful head, disorientation...  I was roasting hot.  I woke up on my 50th birthday in that state, and spent the day waiting for the drug to pass through my system, alternating between my bed and the couch.  The only substantial amount of food I ate that day was, appropriately, a slice of the birthday cake Ani made.  I was much better in a couple of days, fortunately, as Jon's long planned birthday bash was happening. I have to say that as with our wedding, which Jon made sure was big when I was sure I wanted small,  he was right again to insist on a big celebration of a big milestone.  Ribs, barbecued tuna, a band in the back yard all hit the spot.

I was surprised to get a call from the nurse yesterday telling me to go to the pharmacy and get a bottle of Effexor in a smaller dose and try taking the pills again, every other night.  I ate a banana, swallowed the little pill, and went to bed, pretty anxiety filled.  I slept the night at least, but woke up spaced out, a little nauseous, head-achy.  This lasted the better part of the day.  I am hoping that as I take little doses of those little pills, over time my body will adjust and let them do their work.  And then get back to the business of taking the Tamoxifen.

My family is getting used to me, after a short hiatus of being pretty well and full of energy, again being a fairly useless blob on the couch.  We leave for about ten days of togetherness on a road trip through California tomorrow.  Should be interesting... :)

Tuesday, June 11, 2013

Things... After things seemed finished

Long time no see.  My writing brain completely shut off for a while, and I have no idea whether this is a one time return or something more.  I have been in a strange land.  There are questions with no answers, and struggles that cannot be described or defined by chemo, surgery, or radiation.  I thought that on April 11 as I gleefully left the parking lot where I met the van for the last time, I was done.  I should have known from experience that nothing is that simple, or that well defined.  I thought I had powered through the hardest things about cancer, namely the aforementioned causes of physical misery that are the standard pieces of cancer treatment.

Not so.  Like that strange, dark time between diagnosis and the beginning of treatment, this time between treatment and for me, what is next, is difficult.  Between diagnosis and beginning treatment I was lost.  I thought my death was imminent, I thought cancer was overtaking my body, now that I knew it was there and for that long two weeks without any poison in there to kill it.  I was confused and devastated, and very, very lonely.  Cancer is nothing if not lonely, no matter how supported I felt by others.  The experience is its own solitary confinement, at times physical and most definitely emotional.

During treatment, while physically and psychically difficult, there was a job, something to count, an end of this or that challenging phase.  Being sick on the couch was my job, and going to appointments.  I needed to take care of myself, be cared for, and survive.  It was pretty straightforward.

My neighbor, a 30-year breast cancer survivor, told me repeatedly to give myself six months after the treatment, to really heal.  I thought, whatever... I didn't know what she could possibly mean.  Now, about a month and a half into the post-treatment, I think I get it.  I feel like I have gone through a surreal, science fiction-y assembly line, with all manner of procedure, and been spit out the end of it reassembled in a different form.  And I'm not sure I feel too well aquainted with this new life form that is me.  I look different, my body is different, my mind is not up to par.  The clean slate to which I have referred over and over is terrifying.  Out with the old, every last body and brain cell of it, is how it feels, and it is difficult to evaluate or understand what's left.

Also, the chemo-surgery-radiation trifecta and its concrete starts, sufferings, and finishes was not all there is to this.  I found this out a few weeks ago when I started taking Tamoxifen, presumably for five to ten years.  I never considered that this was a big deal, taking a daily pill, but it turns out it is.  Eight days into it I experienced some pretty astounding and debilitating side effects, mostly in the form of an extremely sudden onset, utterly crushing depression.  I have a very clear memory of that eighth day.  I was on a five mile run, doing my usual daily thing.  As I rounded the last curve heading east on the lovely Alderbrook lagoon trail towards home, I had this exact thought: I am so tired!  I am so sad!  There was no good explanation for it but from that moment I was toast.  It is hard to describe, so I'll refer you to www.hyperboleandahalf.blogspot.com for a perfect description of how it felt.  I continued taking the little white pills for a couple of more weeks until my appointment with Dr. Raish, during which I must have terrified him by crumpling into a puddle on the floor.  Three weeks prior I was healthy and feeling fine, and now this.  He gave me some choices, which I did not process through well enough.  Determined to stay on the drug, I left the doctor's office and went swimming, after which I proceeded to be unable to focus on simple tasks and found myself putting lotion on my soaking wet self, having neglected to dry off at all.  I stopped back by the doctor's office where my wonderful doctor put me in a room all over again and we established that I absolutely had to stop taking the Tamoxifen for the three week interim between our appointments together.  He said that regrouping in three weeks was medically fine and if this were his family member he would take her off the pills.  Around five days later, what had felt like a few bricks pressing on my forehead began to abate, and slowly I started to feel like me again.  Only now, a couple of weeks after that five days, am I starting not to feel exhausted and confused, as though I had been hit by a bus and was trying to recover.

So.... Wow... Pretty much all I can say about those little white pills.  I am going to have to either use a different estrogen suppressing drug, or take an anti-depressant alongside the Tamoxifen to make it feasible and survivable.  And here, I thought I was finished.

So, there you have it.  Post-cancer, Chapter 1.

Monday, April 29, 2013

One kind of list

As cancer treatment recedes into the not so distant past, I find myself with less and less to say here.  There is not so much to describe, really.  I run, I swim, my burns are fading.  I feel physically normal!  The exception would be the wierd chest muscle configuration that I feel while swimming, but in the scheme of things that seems small.

Here's a funny story:  My hair has been growing in, which is nice, but very, very gray, which is not so nice.  There is nothing wrong with gray hair, don't get me wrong.  It's just that, at just shy of 50, I simply DO NOT want it at this time.  So...  Given that my hair is about half an inch long, I did not want to spend the dollars going to the salon for a color.  Instead I opted for the $7.99 box of Clairol at the grocery and in about 15 minutes the deed was done.  I chose medium golden brown and in hindsight I will go with plain old medium brown next time, but fortunately it will wash out in four weeks so I can regroup and try again.  At least it is not gray any more.  My son, who is colorblind, asked me tonight at dinner why I made my hair green.  (Our dog Zoe, rest in peace, was reddish brown and white in color.  When we stood outside and buried her ashes back in 2005 and forced our reticent children to say something nice about her, Tim said, "Zoe was a good dog.  She was green and white," which was when we learned how he saw her all his then seven-year-old life.). Depending on the shading he sometimes sees brown properly and sometimes not.  My hair is actually brownish goldish sort of, but to my boy, it's green.  Every time I am in a room with him, it occurs to me that what he sees when he looks at his mother is a middle aged badly put together St. Patrick's Day partier, and every time this occurs to me, I'm forced to smile.

I call myself post-cancer treatment even though I still have Herceptin infusions and will begin taking Tamoxifen this week, but I seem mentally to be in the typical post-treatment that I've read about.  I'll give you a little list of the feelings through which I fluctuate in any given couple of hours:

Relieved
Anxious
Grateful
Full blown panicked
Sad
Depressed
Giddy
Afraid
Focussed
Unfocussed
Worried
Lucky
Happy
Sense of dread and/or impending doom

I'm sure there are more.  The social worker at the hospital in Portland gave me a bunch of breathing exercises to do to calm myself.  They really do help, sort of.  So onward and inward in an attempt to re-enter some iteration of a normal life.

Saturday, April 20, 2013

Marathon

Well, it's been a while.  Last week I saw a death notice in the paper for Judy's (van person) husband.  I knew he had emphysema and was pretty compromised.  Judy had her last radiation the day after I did, and a few days later her death notice appeared as well.  I wasn't shocked that she died; she certainly had no illusions about her chances.  I was shocked that she died so quickly.  I am sad that she spent half of the days of her last three weeks riding the f-ing van instead of doing something else. Every day I have been looking for a notice about a service for her, but I haven't seen anything.  Her daughter is my age, and has just lost both her parents in the space of a week.  Judy seemed to have a lot of organizing she was trying to do, for her daughter and her husband, and her time of doing that, which ostensibly the radiation was supposed to prolong, was cut short.

I know that many people all over the world live daily with the fear and the reality of the horrific scene in Boston this week, its anticipation, its occurence, its aftermath.  But I have never been in a war zone.  I have, however, been at a marathon finish, and so my feelings about it spring from there.  In 2009 I ran a marathon.  The last several miles felt a lot like labor and childbirth.  It was painful, disorienting, and strangely ecstatic all at the same time.  When I finished and stopped running I started crying.  What my body and my brain were doing at that point were completely out of my hands.  After about 20 miles of exertion, a body has used up all of its store of calories, no matter what you put into it along the way, and the disorientation during those last miles is a biproduct of this physiological process.  It is, of course known as The Wall.  What was immediately so sad, among so many other things, on Monday was the timing of the explosions.  The elite athletes were long finished, and at a little over four hours after the start, the majority of amateur runners (like me, though not like me, as in Boston you have to qualify with a time, which in my wildest dreams I never will) would be approaching the finish, with families and friends waiting.  It seems clear that somehow the young men that set up the scene must have known that four to four and a half hours would net them the most people possible.  Did they also know about the state of the runners coming in?  The disoriented, confused joy?  The subsequent stiffening chill that the space blankets take the edge off of, but not the deep interior?  I wonder if the chill will ever leave those runners and their families.

Meanwhile, back in our little outpost at the other edge of the country, I am feeling pretty back to normal physically.  Ramping up swims and runs, while my radiation burns fade away.  Mentally it is a different story.  I stand in front of that clean slate to which I have referred many times and prepare to start something brand new.  More on that later.



Thursday, April 11, 2013

Last day on the van

As I was getting off the van today for the last time, Smoking Barb said the most awesome thing to me.  She said, "I hope I never see you again!"  It was the nicest and best thing anyone could have said at that moment, and my only appropriate response was "Same to you!"

Tuesday, April 9, 2013

Safety nets

While I have written about my gratitude for my own safety net, I am blown away by some people's seeming lack of a safety net of any kind.  A guy got on the van the other day for his six week follow up appointment.  He was on the van for the first couple of days I was, finishing up his radiation cycle.  This week I chatted with him a bit.  He has some sort of cancer in his throat, jaw area.  When he was diagnosed in Long Beach,WA he was given the choice of surgery or chemo/radiation.  First of all, the whole choice thing on these big questions really, really bugs me.  As a lay person, I assume and hope that the professional person I am consulting, i.e. the medical or surgical oncologist, has a pretty good idea what he/she thinks is the best course of action.  I learned this after switching surgical oncologists and being given a very strong recommendation for neoadjuvant chemo by the new doctor, where the first doctor told me to go home for Labor Day weekend and decide which way I wanted to do it.  This made me extremely uncomfortable.  I understand that within the realm of cancer treatment there have been many choices that have been mine and could not be made by the professionals, like whether to have reconstructive surgery or whether I wanted to do radiation in Longview or Portland.  But for big medical questions I am pretty sure if the doctor was treating a relative they would likely have a recommendation for how to proceed.

Back to the van guy, Chris.  Given my caveat of knowing nothing about his cancer or his case (this has never stopped me from having an opinion), I thought it was pretty huge that his doctor did not recommend to him what to do, or what he would do, or whatever.  But here is the kicker.  Chris told me he decided to just have the chemo and radiation because he would have no way to get to Portland, where the surgery would have to take place.  And he added, he knows nothing of Portland and so given that it wasn't really an option for him to go there for surgery.  I was stunned.  And maybe this exposes my privilege or whatever, but Portland is two hours away, maybe two hours fifteen for Chris, and I wondered about his life, having not been there, ever?  So... He has had two rounds of chemo/radiation and was told at his follow up that his cancer is not fully gone.  There is no surgical option now because he wouldn't be able to heal due to all the radiation he has had.  He can try another round of chemo and that might be it.  Now, I have no idea really whether his cancer would have played out this way anyway or not.  I am just in disbelief that this human being simply had no safety net, public or private, to help him out.  Shouldn't a rural oncology clinic have a system in place to help a person in these situations?  Shouldn't people have people in their lives to lend a hand in a crisis?

I have ridden the van to save the gas money and put fewer miles on my car.  Others have no alternatives.  It is just hard to swallow, that some people are that alone.  As I said earlier, I have little information about this man, his medical situation or the presence or lack of loved ones in his life.  I only have what he stated, matter-of-factly in a brief conversation with me.  He shrugged a couple of times and said, guess we'll just see what happens, like he was talking about nothing more than a basketball or football game in which he did not have much of a stake.

Wednesday, April 3, 2013

You just never know what is going to happen...

Well, my counting has been wrong for a while.  It seems Dr. Kim forgot to tell me, yes, forgot to tell me, that I am having 33, not the 28 radiation treatments he told me I was having.  Apparently I am having the 28 and then five additional treatments to the lymph node area only.  So.  I will be riding to Longview through next Thursday, not tomorrow as I had thought all these weeks.  A small bump in my bumpy road, but yet another panic inducing quake to my already shaky ground.  It is amazing how changes (or not changes, just the plan I am apparently the last to know about) can throw a person off.

Anyway, another week of the van, and luckily Jon planned the SD trip a couple of weeks out from treatment so that is still post radiation.  Embrace the suck!

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

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.

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

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.

Thursday, February 28, 2013

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.

Tuesday, February 26, 2013

The van

The hospital where I am having radiation is 50 miles away, a one hour drive along a rural highway.  The other option was Portland, 100 miles away.  The nice 50-mile-away hospital provides a van service for people in rural areas like mine.  So, this morning, I went to the designated spot and squeezed in with my seven comrades with varying levels of hair growth, and off we went.  Mostly, it was quiet.  I spent quite a bit of time chatting with a 9th grade English teacher from a neighboring school disrict, with whom I am aquainted through the book store back in my past life.  He had a posthumous collection of Vonnegut writings in his lap, I had my Sonia Sotomayor autobiography.  We chatted about books, cancer (his, throat), mutual friends, our children, and passed the time nicely.  My only complaint?  Oddly, ironically, the van kind of smelled like cigarettes - not like someone was smoking in the van, but like someone in the van is a heavy smoker.

Radiation took about six minutes, after about six minutes of set up on the table.  I have to say, it was wierd.  It felt like nothing, and something huge and mysterious all at once.  No smell, no sensation, nothing visually apparent.  Nothing got warm, or cold, there was no red or highlighter yellow nuclear glow...  And then it was back in the van, door to door in three and a half hours.  And this is my weekday life 27 more times.  Maybe I need a sticker chart of some sort.

I would have chatted with the ladies sharing my bench, but they did not seem game.  I imagine everyone is just plain tired, and two hours of spacing out or thinking quietly is not a bad thing when in one of those Cheryl Strayed which-way-is-the-bull situations.  (See my entry "The Bull" if after my repeated references and overkill on this passage of "Wild" wasn't enough.  I guess I need to read a lot more and develop some new material to quote.)

I'm really tired now and it could not be from radiation yet.  I spent a good deal of the day in between the radiation road trip and a physical therapy appointment on the phone trying to find a place to fit me for a compression sleeve to prevent lymphedema when I fly, which I am going to, as soon as my sticker chart is full.  I finally settled on the occupational therapist in Longview, where I have to go every day anyway, so that works out well.

Tomorrow, radiation road trip followed by an afternoon Herceptin infusion and oncology appointment.  I think it is time to watch some trashy t.v.

Friday, February 22, 2013

Betrayals, large and small

In 2005 when I started experiencing symptoms of what would turn out to be rheumatoid arthritis, I felt betrayed by my body.  I was in the midst of training for my second sprint triathlon, and feeling very fit and strong, except for the excruciating pain in my feet.  Well, it turns out that was nothing.

In 2012 I was feeling as good as I ever have.  I accomplished my goal of completing an Olympic triathlon in three hours (technically 3:02, that pesky bathroom break).  My fitness and my body, I felt, at the age of 49, were in their primes.  That was a month before I was diagnosed with cancer.  Certainly and unknown to me at the time, I had cancer throughout my training and through completion of the triathlon.  After I was diagnosed I could not shake the suspicion that my body was filled, all over, with cancer.  In the couple of excruciating weeks between diagnosis and scans, between diagnosis and beginning of treatment, I experienced a lot of unfamiliar pain all over my body.  My irrational mind, or the mind that was feeling the sting of being betrayed by its body, interpreted everything as cancer, everywhere, and gave me symptoms to confirm it.  It turned out that I had a lot of cancer in one breast, a little in the lymph nodes under my arm, and none anywhere else.

Throughout chemo and now in its aftermath, I am forced to conclude that my body, no matter what I do to take care of it, is at times painfully out of my control.  I can no longer brag that I never get the sicknesses that float from school into our home.  I seem to catch everything, with my still immunocompromised system.  I can no longer exercise my way to health, or the illusion of it (I have yet to be cleared for running or swimming at four weeks post-op).  Hopefully I will be able to start jogging again in the next several weeks.  Even so, even if I could right now, I couldn't, as my body has gone and betrayed me once again.  I have no idea how I did it, but my back is just killing me.  I suspect I threw something off lying on the hard metal table getting set up for radiation while raising my arms over my head and grasping a bar as instructed by the technician.  My arms are more mobile

every day but the over my head reach is still a challenge.  Maybe my muscles spasmed while holding that stressful position.  Who knows?  All I know is I am now one of those people for whom "it's always something."  As soon as one thing improves, another falls apart.

And, since having cancer, it is of course impossible for my mind not to speculate on whether this sudden back episode is cancer.   That is the crux of the betrayal.  While in our culture there is so much cancer that I imagine many people have moments of wondering whether a symptom is one of
cancer, for those who have or have had cancer it hits a little closer to home.  If I am cancer free for the next five years, or bettery yet ten, these doomseeking tendencies may calm themselves.  But with radiation still to go to sweep up and kill any "rogue cells" in my chest wall, these thoughts are hard to shake off.

If you're still with me after all those downer paragraphs, there is good news.  I will be starting radiation next week on Tuesday, after one more set up appointment on Monday.  It is a week sooner than expected, because I cajoled them to hurry up with my set up and let me start.  And because my physical therapist has helped me alot with regaining the mobility in my right arm so I can lie with my arms over my head and receive the death rays properly.

And... Jon went ahead and purchased the two of us a little getaway to San Diego at the end of April after the radiation is done.  Temps hovering around 70 and sunshine.  It is raining here again and blowing like stink, so this is an awesome thing to look forward to.  It's not all complaining and doomseeking, and everything feels better every day.

Thursday, February 14, 2013

A correction

I thought I should correct my reporting of the pathology report, especially since corrected it is better than the way I reported it.  I said that 25% of the large tumor remained after chemo.  That is true but the rest of the report is that of that remaining tumor about 25% of the mass was actually still cancer.  The rest was dead tumor, um... stuff, whatever happens when cancer dies but does not disappear.  So really, the response to chemo was most, most excellent.  Just wanted to clarify.  The 2mm of cancer in the lymph node was properly reported.  OK, that's all...

Hooky

I took Tim from school for a doctor's appointment this morning and he somehow convinced me that it was unnecessary to go back for PE and tutorial (study hall).  So... good or bad (depends how you look at it) mom took him for ham and eggs at the Pig 'n Pancake.  It's not really so bad.  He does still have a nasty cold, and he is sitting at the table doing Spanish and English homework, to be followed by (gasp) opening his driver's manual for the first time, to start studying for his permit test.  My baby is eligible to drive in two weeks.

On another topic, I feel like I am growing my brain back.  It honestly feels as though for about four months I had no ability to focus, think, analyze, decide, create, finish (anything), absorb information, retain information.... you get the picture.  Slowly, slowly, things seem a little clearer and crisper.  Articles in the New Yorker are more appealing to finish.  People magazine seems as vapid as it really is (don't get me wrong, I still enjoy the heck out of it).  Maybe part of chemo brain is self protection.  Did I, in fact do I really want to fully understand and analyze my cancer situation?  I'd like to say yes, but the truth is, however frustrating that hazy feeling was, it was probably a kind of a gift.  I'm not all here yet, but I feel I will be.

Hopefully radiation doesn't set me back in this area.  I am not aware of any radiation-brain type side effect.  And so help me, if the radiation messes with the fuzz I am growing on my head I will be incredibly sad.  Growing hair from scratch is a pretty slow process, at least on my head.  What little progress I've made I do not wish to lose.

It is hard to believe that this whole experience has been happening for only five and a half months.  At other times in my life half a year was like the blink of an eye.  A darn successful Olympic triathlon at the end of July, two sweet weddings in August.... these seem a lifetime ago, or really someone else's life altogether.

Tuesday, February 12, 2013

Around and around

For those readers unfamiliar with the place I live, our house is up a small hill from the eastern edge of a lagoon on the Columbia River, around which there is a three mile long trail.  Half the trail follows a railroad trestle over the lagoon, and half is the streets through the Alderbrook neighborhood.  It is quite beautiful and scenic in any weather.  On any given day I see a wide variety of ducks, eagles, great blue herons, sea lions, once or twice a family of otters, container ships and fishing boats... you get the picture.  I wish I had tracked my mileage on these loops throughout my cancer treatment.  I have no official information on miles swum during chemo or miles run or walked, but by vaguely estimating I can approximate.

Based on the fact that until my surgery, I swam and ran on alternating days with very few exceptions, I would guess I swam 70 miles or so, and ran about 180 miles.  These are pretty vague, mental math approximations.  This week I started walking my loop briskly, poodle in tow, in my running clothes.  (I have always maintained that if you wear exercise clothes, you're exercising.)  I have some time before running, and more time before swimming, will be ok again.

There is a point to all this, that I was going to write about today.  And it involves the many, many Alderbrook loops I have traveled on foot, mostly with the dog during this at times completely craptastic time.  These loops, as well as the miles swum, made it all far less craptastic, and part of that is because of the neighbors I saw on a regular basis, and who gave me so much support in the form of check-ins, dog patting (when she allowed it) and plain old non-cancer chitchat.

During the last few months I feel like much quality time was spent talking with neighbor women.  I learned that my neighbor a few houses down the hill had breast cancer twenty five years ago, as a single working mom.  She has been one of my biggest cheerleaders, and a huge inspiration.  Another neighbor took on gluten free baking to cheer us up repeatedly with, frankly, some of the best chocolate chip cookies we've had.  Yet another sensed my isolation and took me to Portland to buy clothes in the hope (mine) that I would eventually feel like wearing something cute and giving a €{^#% what I look like.  Yes, when you're bald, with no eyebrows and a gray to pale gray complexion it is pretty hard to care, I'm guessing even for someone who cared more than I did in the first place.

On most of my loop outings, I encounter a neighbor or two, and of the many things I have for which to be grateful, I wanted to mention these.

As far as my situation at the moment...  I feel better every day.  Physical therapy on my lymph compromised arm is torturous but remarkably helpful.  I have kept to myself about my reconstruction, but I will say, as horrified as I felt about my decision to do it during the first two painful and swollen weeks, no pun intended they are really growing on me.  The implants are starting to feel less like foreign invaders and more like, well, nothing.  Ani commented that they look just like mine, but better.  My arms are regaining their mobility faster than I expected, though the left is a lot easier than the right, and I am planning to ask the radiation oncologist whether I can get started earlier than planned.  So... the end is sort of in sight, that clean slate in front of me, waiting.

Saturday, February 9, 2013

More waiting, a little less wondering

After the chemo there was a four week gap to regain health before surgery.  The gap between surgery and radiation will total six weeks, for healing from surgery and regaining mobility in my arms so that I can raise them over my head in order not to irradiate them as well as my chest wall.  I understand the necessity for all this, but waiting for time to pass is a surreal and odd experience.  I don't feel ready to jump back into life, given partly that doing so in my case requires a complete redesign of said life.  And since my time from early March through mid-April will be partially consumed by travelling an hour each way five days per week to receive the radiation, plus every three weeks Herceptin infusions (a couple of hours factoring in wait time and doctor visit), plus physical therapy for lymphedema prevention and arm mobility, plus a couple of more Portland medical visits I need to take care of - realistically, how can I ask anyone to hire me until it is finished?  It would be one thing if I was working now - I realize people make working work with cancer treatment, but this starting with a clean slate seems to require just that.  A clean slate!

Things I Now Feel I Can Look Forward To

In late August and pretty much through receiving my surgical pathology report at the end of January, I honestly and dramatically wondered how long I would get to be around.  There was so much unknown (to me, the one with the cancer).  In all objective reality, it was and is thought by those who know about such things, that I would be cured.  There is a certain risk of recurrence that I need to live with, of which I am choosing not to know percentages.  If you or a loved one has had cancer, you know that objective reality is often missing from your deepest thoughts.  You think about death and dying and missing life's milestones on a regular basis, even though no one really knows how and when they will die.

I now feel more certain I will see my kids graduate from high school.  I feel somewhat confident I will be here to find out where Ani goes to medical school, and to find out an inkling of my son's path as an adult.  It seems I might more likely find out what being an empty nester with my husband is all about.

I am happy to report this, as these represent a pretty major shift from late summer, when I was not even confident I would be here this summer to see how Breaking Bad ends.

Wednesday, February 6, 2013

In between

My surgery site gets a tiny bit better each day.  There is still considerable swelling and the numbness may last for years, I'm told.  I found out at the radiation oncologist that I will be set up for radiation in two weeks, and will begin five and a half weeks of daily radiation two weeks after that.  I understand the need to heal before moving on to this next phase, especially given the fact that I have to be able to raise my arms over my head while lying on the table.  I am not even close to that now.

My right arm is definitely presenting a much bigger challenge.  I have never given much thought to lymph nodes and their usefulness, but whatever they do, the lack of them is apparent. I can feel many cords, or bands within my arm, which no longer seem to stretch the length of my arm, inconvenient... The skin on that arm is prickly and painful, as though there is a rash on the outside, but there is not.  And my right arm feels heavier, more tired, and more limp than the left.  I have a feeling that becoming a swimmer again is going to present more of a challenge than I let myself think about prior to this new reality.

However, I am trying every day to appreciate that according to all available information I am presently cancer free.  I am trying not to worry about or look into other available statistics on the likelihood of recurrence later on.  I'd like to say I am a person who wants to learn everything I can about all aspects of my cancer, but the truth is, at this point I am not.  It is either going to come back or it is not.  As much as I can do to keep myself healthy, I will.  I believe, though, that cancer is pretty random, and I can protect myself with only the tools in my control.  The cancer is realistically not in my control.  If it were, I would have made the chemo destroy all of it.  Actually if it were, I would never have gotten it.  In my case, the chemo destroyed most of it, which is great, but if it is true that we can "battle," or "win," then why didn't I in a more complete way?  All through chemo I kept myself fit, rested, well fed.  I tried to visualize the complete response.  Believe me, the outcome could have been much, much worse as far as response to chemo, so don't get me wrong, I am appreciative, but I just can't see much beyond the randomness of it all.

That said, I need once again to be so grateful for the development of Herceptin, which is in a very unrandom way saving my life.  I am off to get my tenth to last infusion this morning, after I finish my banana blueberry carrot broccoli smoothie.  Believe it or not, it tastes pretty good.

Wednesday, January 30, 2013

Post-op

Yes, I'm alive...  And even showered, finally.  Surgery went well, not fun, that's for sure, especially the part where you have vials full of fluids from your insides hanging off you.  Two of the drains came out today and the remaining two should hopefully come out Monday.  That will feel very, very good.  The pathology showed a very good response to chemotherapy.  25% of the large mass remains, and 2mm of cancer remains in one lymph node, after early scans showed four enlarged lymph nodes.  I had twenty lymph nodes out though, which hopefully will work out ok for me re: swimming and other fun things in the future.  The surgical margins were all clear and clean, so basically I'd like to think at this moment that I am cancer free.

Monday I see the radiation oncologist and will know more details about when and how much of that I am having.  It will be four weeks or six weeks probably, and is five days per week.  The radiation is happening because of the cancer, even the teeny bit, remaining in the one lymph node, and because a bit of the tumor hung on despite the chemo.  It is done to  take care of any potential "rogue" cancer cells wandering around in my chest.  It is the easiest part of this whole thrill ride, and the hard parts are pretty well done.

I have a ways to go to heal from the surgery and am still pretty much lying around taking pain pills.  My cousin left me her "Six Feet Under" complete collection after her visit, so I am pretty well set on tv between that and "Parenthood."  I know what Mia and I will be doing tomorrow.

Wednesday, January 23, 2013

Surgery

Jon here:  surgery yesterday was successful.  Double asectomy, two implants, lymph nodes on her rightw side removed, port removed and four drains put in which will be in for a week to ten days.  Laura is tired and in some pain but doing very well.  Both surgeons stopped by this morning and are happy with how she looks and is doing.  She has two drains on either side of her that need draining and measuring the discharge every four to six hours so Ani and I will something to do.  We will be discharged around one today and make our way back to astoria...  Our niece Rose is planning on coming this morning for a visit which will be nice.  Thanks for the well wishes and music played on the radio for Lu!

Sunday, January 20, 2013


Jon Here as if you can't tell by my pedestrian writing style...  Laura and I go into Portland tomorrow for her 5:30 AM surgery check in on Tues. Jan 22.  The National Cancer Society has gotten us a hotel room for two nights as she will stay in the hospital Tues. night after surgery.  This week was supposed to be a good one for Laura, Chemo was a few weeks ago now so some of the worst side effects are disappearing and it was her last chance to swim and run for six to eight + weeks.  Well, as life is, she came down with a wretched cold Sunday and had a fever Monday and or Tuesday... But the fever was gone by Wed. so it seems like she will be healthy enough for the surgery.  Then just to make sure Laura is kicked while down, she woke up Saturday morning with her eyes all crusty and bloodshot and watering and ichy.  Mid day yesterday  Ani said that it really looked like pink eye so Lu went to Urgent Care and yup it was Pink Eye!

Thank goodness Ani said something cause with the drops, it feels better today.  After praising Ani on the our beautiful morning walk to the water today, Ani said look, it really wasn't hard to diagnose.  Her eye was pink and it is called pink eye...

Last night, I went to the Wet Dog Brew Pub where the Portland Timbers Captain Jack Jewsbury was doing a public relations gig and got his autograph and won a sweet way too big Timbers Rain Coat!!!  I had him sign the coat too!!!  Way fun!  Anyway, we all wish Lu felt better but at least we are moving along to surgery!

Ani is making GF cupcakes right now and there are a few fun football games on this afternoon to take our mind off things!  Go Patriots!!!!

Wednesday, January 9, 2013

An actual update

I saw Dr. Raish today and he reported on the mri I had Monday.  According to the mri, the lymph nodes all look normal in appearance.  This is very nice news, though whether or not cancer cells are still present is yet to be determined by the post surgery pathology.  The larger mass in the breast is smaller, and still visible, though (I can't remember his technical term) unmass-like, more skeletal than tumor-like.  Again, there is no way to tell whether any of it is still cancer until the pathology comes back a few days after surgery.  So....  it is good news (nothing stayed the same, or grew, and nothing new apeared), with a grain of salt (we don't know exactly what any of it is).  Regardless of what it is, it will all be out of my body by mid-day on the 22nd and what it is or is not will determine whether or not there will be radiation following surgery.

And that is the news for today.  Aside from the slightly boring stuff of everyday life.  I am coming out of chemo sickness more every day.  I do not seem to be ending up on the couch by four in the afternoon this last few days.  I have been to Portland twice this week, once to see The Book of Mormon (totally awesome) and once for two cancer related appointments and a quick lunch at the Indian buffet.  I also went to St. Helens to watch a swim meet yesterday, and am heading back to Portland tomorrow.  This would all have seemed impossibly exhausting a week ago, so something is definitely shifting, and shifting nicely.

Tuesday, January 1, 2013

Happy new year

Happy new year all.  Judging from facebook surfing, We are not the only ones for whom 2012 was a difficult year.  The first half involved Ani's lingering back injury, surgery, rehab, and ultimately, thankfully, recovery.  She is running, swimming, most happily skiing again.  New year's will see her making training plans to be ready for track season.  The second half involved me being diagnosed with cancer, as you know...

Jon thought a good New Year's resolution for me would be not to have cancer.  Seemed straightforward enough, though I added in the not small goal of "not being such a freak about everything" to my list.  If you know me, I have set myself a pretty challenging goal here, one that will require constant vigilance to manifest.

Tim told me last night: "Resolutions are a flawed concept."  I think he just didn't feel like being bothered by his mother about my wish for him to set a goal.  But we did come up with a couple of palatable ideas for him.  I spent the evening talking with Tim, always enlightening.  Ani went to a friend's and Jon went out to dance and blow off some steam with good friends.

Tim and I stepped outside in the cold at midnight as all the ships blew their horns, he let me hug him, and we went to bed.