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...


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.