Tuesday, October 30, 2012


I dragged myself to yoga today, finally.  I had been meaning to try out the new studio for months, and  I have been failing in my quest to practice yoga on my own.  I realize doing that on some level is just one more instance of not leaving the house.  Not too healthy, so I went.  As far as the class, I liked the  one I took last year through the Parks better (cancelled).  But it was a perfectly serviceable Vinyasa.  I was really glad I went.  There was again an extreme kind of rainfall happening, the kind you literally can't run in, and the swim countdown is this Friday.  I sweated, moved, felt like poison was moving and shaking all over my body, in a sickening sort of good way.  I tried to make it a cleansing experience, and will go back for more.  I even let the small group know that I was bald before I took off my hat so as not to freak anyone out, and then I actually took off my hat.  I had been dreading sweating through yoga in a cap, and I didn't.  I have to say the several people were totally nonplussed.

Now, unusually, my arms are like jello.  The whole thing was extra tiring, for obvious reasons I guess, but what the hell, I don't really have anything else I have to do.  I am getting used to my rhythm and if I just decide not to mind watching Mad Men episodes and venturing out one time for exercise, then there is really nothing to mind.

My friend invited me to Portland Thursday to shop a Title Nine sale.  I am jumping at the chance, and realized that the fact that I never go anywhere has been my own bizarre choice.  I feel like I am about to have a vacation from the walls of my house, and the retail therapy won't hurt.

Wow, this is not a bitch session.  Is that a first?

Monday, October 29, 2012

Taking the plunge

I guess that yesterday was the day I made the decision not to keep a separate, private diary.  Everyone I know, and I mean everyone, has encouraged me to write about my experience.  I began to realize that if I do not say what I want to say in this venue, this very public venue that my own mother reads, I will have to maintain another, real and truthful journal in a parallel universe.  I don't have too much energy, and (whine whine) I do not want to keep two journals in parallel universes.  I want to keep one.  So, for better or worse one it will be and I will have to say the private things as well.

The upshot of this is I immediately felt bad yesterday, my go-to emotion, that I might have offended the very people who care enough to ask about me.  The last thing I am interested in right now is alienating people, or making people feel like they don't know what to say to me or how to say it.  I am ok with being asked how I am!  I will also ask how you are, especially this week all my east coast peeps.

What I was/am attempting to process is the tendency to hide out at home, and why.  I think that it is probably natural to want to limit interaction, but I have to be careful.  I am already an introvert, who has always said no more than yes to going out and socializing anyway.  My husband, luckily, has friends who like to go out, and he has outlets for his severe case of extrovertedness, not the least of which is working in two high schools with teenagers.

Anyway, I have been realizing for a long time writing this blog that being matter-of-fact and occasionally funny is not saying enough about having breast cancer.

The HMS Bounty went down off of the North Carolina coast last night or this morning.  Possibly two crew members are still missing.  I used to crew, mostly cook, on tall ships, and have such a sick and sad sensation right now.  Sailors know, there but for the grace of whoever...  In 1986, the evening I arrived at my first such job, washing dishes on a schooner, I arrived for dinner at my captains' house (grammatically correct, people, this couple shared the captainship).  They were stunned and sad to have just received news that the Pride of Baltimore had sunk, and with it several crew members known to them and what would soon become my own small community.  I will never forget that moment.  It has always stuck with me.  I often think, one minute life is one thing, and the next it is something altogether different, unexpected, unplanned.  For the loved ones of the lost on the Pride, for the group tht survived in a lifeboat (no small trauma), and now for the Bounty crew and loved ones, life will never be the same.  There is an interesting amount of metaphors for being at sea, and finding onself being treated for cancer.  The feeling of not knowing what's next, no matter how well prepared for it you think you are; the feeling of being in the act of something with set rules and a usually predictable outcome, except for when it isn't; and the feeling of being thrown into that messy unpredicability, like it or not.  I have been out of the sailing world since about 1992.  I have kept a couple of ties to people from that time and I know they are grieving this recent loss.  I am hoping Hurricane Sandy doesn't bring more than this.  As far away as it is from my house on the Columbia, it feels kind of close to the bone today.

Sunday, October 28, 2012

Running into people

I want to tell myself it is nice to run into people.  I live in a very small town, in which it is hard to go anywhere and not encounter someone you know.  This, for me, has always been a nice thing.  I would say exceptions have been during controversial school board stuff, budget cuts that upset people, etc.

Now, I am amazed at the energy drain that is running into people, and have been making some effort to figure out why.  I guess it is not that hard.  People ask me how I'm doing, and I say pretty well, when I have a disease that forces me to think I might not survive.  This is the reality of cancer, really, any cancer.  In 1996 Jon saw a mole on my leg and forced me to have it looked at.  It turned out to be melanoma, a tiny one, stage 0 or maybe close to 1.  It was excised, I did follow up (still do, in the form of every five year or so blood work and chest x-ray), and that was it, sort of.  Ani was a baby when I was diagnosed with what can now be seen as my, um, practice cancer.  I was scared and horrified that I might not see her grow up, that my amazing life with my new baby girl might be cut short.  As unlikely as it was that I would die of melanoma at that stage in that circumstance, I was afraid that I would.

Now, I am again in a situation of fearing I will not live to see things I want to see.  Like, as a Jewish mother, where my daughter goes to medical school (or when I am really anxious, even college).  Seeing my son graduate high school.  As much as I am told by experts and others who have survived my exact circumstances, there is no way to avoid the fear.  As I have said here, I have tolerated more difficult physical circumstances, but not the difficult things rolling around in my head.

When I run into people, don't get me wrong, excellent people who I like, respect, and in a normal life would love to chat with, I feel the need to hide all this.  I reassure people the way doctors have reassured me, that this is a rough patch of road, that I will come out the other side of it, that I have a "garden variety" treatable breast cancer, that I just have to stay focused (ha) and get through what I am doing.  And it is this reassuring that drains my energy,  because it is not really that close to what I am forced to think about a lot of the time.  Who is forcing me to think these thoughts?  I could say me, and I could wish I was more relaxed, trusting, and centered, or whatever, but it is the cancer word.  I really don't think that anyone with cancer avoids the fear, and I'll bet every one of us spends time trying to reassure the people around them.

I know I keep referring to the anxious person that I am (or was), and really it's true.  Before the end of August I had so much floating around my head.  I can't even tell you any more what I was worrying about then.  It disappeared with the diagnosis.  I'm not saying that's a good thing, since those worries have been replaced with one large knot of a pretty powerful worry.

So, another thing that cancer does, for the weak like me at least, is make you want to hide out.  Encounters are difficult, and tiring, and why bother?  Except that not leaving the house is not an option either.  I have a friend who told me during her cancer she pretended to the world that all was fine, would be fine.  She went about her life in as normal a way as possible, through surgery, chemo, radiation, etc.  (She did, thankfully, have a great outcome, and I am thankful every day to have her to talk to.)  I think we all do that, because what choice do we have?  But I have not gotten completely there yet.  It is still hard to show up at things.  Jon did the school conferences, and brought me reports.  I will forever think I was pretty weak not to show.  I also know the kids are fine, I can email teachers, and Jon chatted with all 13 or so of them.  I have now had half my treatments, and wonder if I will be better able to manage the outside world during the second half.

Thursday, October 25, 2012

Post chemo

Day two...  I seem to get two good days before feeling sick, so today I did a crap load of little errands, ran four miles, bla bla bla.  I am tired now.  Tomorrow I will attempt to motivate to walk with a friend at eight (!) complete with running back to the car.  And still hope to have energy for a lunch date at the Indian buffet.  That place is a real highlight.  I always crave it.  This is all part of trying to follow the advice of a friend who has been through what I am going through.  She said to accept offers of help and socializing, which I haven't been very good with up to now.   I am attempting to actually answer my phone, and (gasp) return calls, which I have not been too great about.  But see?  I have two dates tomorrow, after which I will need a nap but whatever.

Chemo was uneventful.  I did run into a friend in there who is also having chemo, and with whom I had been meaning to get in touch but hadn't.  It was nice to sit and chat with her, oddly comforting to talk with someone in my boat, though I do not, obviously wish for anyone to join me in this boat.  It is a shitty, scary boat, but I am making my adjustments in it.  I will write a longer post when I can think of something incredibly interesting to write about.

Oh yes, there is one thing.  I found the perfect head wear for a bald woman.  If you have a friend who is stuck with a bald head get her one of these.  Go to rei.com and search under women's headwear for a Buff.  There is a summer ( lightweight, coolmax fabric) as well as winter variety.  I opted for summer because my hats are so hot indoors.  It is a long tube of fabric, no seams, breathable, and all that, and if you watch the video at the listing a nice woman will show you a gazillion ways to wear it.


Tuesday, October 23, 2012

Alien invasion

This port is sort of freaking me out.  It dawns on me that I have this implant inside my body that will be there for close to a year.  I know it is a good thing to have, I know it is a better delivery device for the chemo, etc. etc.  But I suppose it will take some time to get used to it, and forget to be freaked out by it.  The site is sore, nothing horrible, but it reminds me that the double mastectomy is going to be a  much, much, much bigger and more painful deal.  So there's that too.  I just got home from having my blood drawn through the port for the first time.  For some reason I was very, very nervous.  The nurse was nice, and calm, which helped, and I'm sure she was well aware that what she was doing was No Big Deal.  I have no idea what was wrong with me.  In the end, it took a couple of minutes, was relatively without pain or discomfort, and I went on my way, relieved to have done a test drive of it before the chemo tomorrow.  The nurses also both remarked that it looks very good, in a way that gave me confidence in my surgeon.  Though, I have to confess we have been watching Grey's Anatomy lately, which is probably a really bad show for me to watch.  Surgical interns, botching things and Patrick Dempsey jumping in to fix it.  Did my surgeon do my procedure?  I have no clue, but I guess whoever did it did a really good job.  Last night on Grey's there was even an anesthesiologist who was called out for smelling like bourbon.  Too bad it is such a good show...

I am trying to be "busy," which for me means things like cleaning out the freezer, rewarding myself with a couple of Mad Men episodes, listening to an excellent Fresh Air over lunch, organizing a corner of the living room that is full of crap that needs to be packed up and disappeared.  And that is the sum total so far.  If it is not raining too hard I will run with Tim after school.  This list of things has made me very tired.  I can't for the life of me figure out if that is because of the chemo or because I am doing so little I have made myself this way.  Either way, this is an honest look at my daily life right now.  Not what I had planned, and not a pretty picture.  I had planned to be somewhat through the long transition from bookseller to ______________.  But I'm not.  I attempted to look at GRE questions for a while yesterday.  What a fucking nightmare.  Do I really want to learn all my math again?  I would rather just find work that feels like good work.  Hopefully that is what I'll be doing late in the spring or early summer.  

So there is chemo tomorrow to look forward to.  Yes, I actually look forward to this day every three weeks - something to do that feels like I'm doing something.

Saturday, October 20, 2012

Practice surgery

Yesterday we spent the afternoon in Portland getting a chest port placed to make the rest of the chemo safer to administer.  For clarification, it is not a shunt and has nothing exposed on the outside. There will be a small bump on my skin and it is all underneath my skin, so I can do my normal activities, which is a relief since I will have it for about a year.  I will be getting Herceptin eleven more times after the chemo is done, every three weeks, and will get it through the port.  Luckily, Herceptin is not a chemo drug but more of a biologic type agent so it will not make me sick or prevent me from growing hair after the four months if chemo.  The lame (all relative) news is I cannot go in the pool for two weeks while the surgical site heals.

I love my surgeon. She is brilliant, highly competent, and has amazing social skills (I know some surgeon types lack those).  Also, in chatting, we found out she is also going to the Springsteen concert, and The Book of Mormon!  This says nothing about her qualifications, but it made us so happy nonetheless.  She's One Of Us!  If anyone is curious about her, her name is Jennifer Garreau at Legacy Health Center in Portland.  (Mothers, I know you may want to google her if you haven't already!)

Dr. Garreau also called the procedure a little practice surgery.  Also, we got some clarification on the lymph node question.  That is, I have been asked by concerned friends and family why I am not having a sentinel node biopsy during my surgery.  I had a needle biopsy that found cancer in a lymph node, and the MRI showed three positive lymph nodes.  If a sentinel node biopsy is done, all the information they would have would be about the sentinel node and there is no way of knowing whether there is cancer in others even if the sentinel node shows none at that time (because at this point there is) until they are removed and examined. It is definitely possible that the chemo may clear out all the cancer prior to surgery, but that is not a guarantee.  To do a double mastectomy and leave potentially cancerous lymph nodes in me is not a good idea.  The standard of care in my case is to do the axillary dissection (removal of lymph nodes, in my case, two of the three clusters of them under the right arm).  Dr. Garreau told Jon that my physical fitness and level of activity will help me not to have arm problems, and I am definitely a person who will do all of the recommended follow up, physical therapy, and whatever else to prevent or minimize problems with my right arm.  So that is the definitive word on the lymph node question.
This weekend I am supposed to take it easy, and can probably go for a run by Monday.  I have been thinking about the time period of the beginning of my rheumatoid arthritis for some reason.  2006 and part of 2007, about a year and a half, were pretty hellish.  So far, physically at least, I am concluding that that experience was a whole lot worse than this one.  It was incredibly, incredibly painful, debillitating, and was accompanied by depression that was physiologically caused by my immune response.  I feared during that time that the state I was in was the state I might be in for the rest of my life, which would possibly involve me ending up in a wheelchair.  Luckily my medications panned out and I have been living almost symptom free for the last five years. This current crisis is more of a challenge mentally (and may certainly become moreso physically as time goes on), much more, as the cancer word is involved and with it some pretty scary questions about what the future holds. It is also a condition with outward manifestations (particularly the baldness) that advertise to the world what I am going through, which is also much more of a challenge.
Anyway, that is just some rambling, as this is what my brain does now: ramble.  Happily, my cousin is coming over today, which will be pretty great.

Wednesday, October 17, 2012

Medical update, sort of...

When I started the blog I thought there would be constant medical updates we needed to report to a lot of people in an efficient way.  It turns out that there are rarely medical things to say, though there have been and will be periods of intense medical activity, like when I have major surgery and whatnot...

Friday I am scheduled to get a chest port placed, to administer chemo into a larger vein and preserve my smaller veins.  I was supposed to check in at 5:30 a.m. in Portland, which required us to reserve a room at the hospital guest house for Thursday night.  Avoiding leaving home at 3:30 in the morning was the civilized thought.  The first thing the guest house manager told me was that we cannot go there if we are sick, as people who should not be exposed to bad germs are staying there.  So, of course, Jon and I both caught colds.  I had to cancel the overnight, as I am really not interested in paying for any of the nice hotels nearby the hospital to make it reasonable and worthwhile to do the early check in.  Our surgeon was nice enough to reschedule for late in the day, and allow me to get the port placed in time for my chemo next Wednesday.  The down side?  No food or drink from 8 a.m. on to the procedure at 4.  I am trying not to whine.  I eat often, and alot, and fasting is not my thing.  Sigh...  I am not whining.

On another, cheerier note, say what you will about what a wasteful time suck facebook is (it is, I know), but I was very happy to have it yesterday, as I was having a lovely morning chat from my living room looking out at the Columbia River with a friend working for the Foreign Service in Cyprus.  I have to say I am appreciating virtual contact more and more these days.  I spend a lot of time alone, talking to my dog...  My friends here happen to mostly be teachers, and I had the bad timing to be lying around having chemo starting in September.  Again, I am not really whining about it, just reporting.  These same friends would be the first to point out that I can be kind of an anti-social loner anyway, so it's not like I have had a complete and total life change.

The port placement should be no big deal, except for the probable several days of no swimming.  This too shall pass....  That's all for now, and no foul language either.

Monday, October 15, 2012

One in a thousand, on the couch

Some girlfriends had a laugh last night about the prior post, in which I mentioned I was writing to keep our mothers connected from afar, then proceeded to swear repeatedly like the sailor/cook that I was long ago.  All about that era has mellowed, except the foul mouth, which I find oh so satisfying to use at choice moments.  And a lot of other moments as well.  I know I swear too much, and I don't really think fixing it is one of the important personal improvements on my list of pressing personal improvements.  So...
Anyway, I saw this poem this morning and it spoke to me.


All night my heart makes its way
however it can over the rough ground
of uncertainties, but only until night
meets and then is overwhelmed by
morning, the light deepening, the
wind easing and just waiting, as I
too wait (and when have I ever been
disappointed?) for redbird to sing.

by Mary Oliver

Saturday, October 13, 2012


Hi, I know I've been a little remiss here.  I know the mothers really like to see something here, so I am going to attempt to fill some space with the sadly-nothing-to-report that has been my life this week.  The sad fact is, this cancer thing, like sailing, or lifeguarding, or any number of examples, can be classified in the boredom-punctuated-by-terror school of activities.  Honestly, mostly it is really so fucking boring...

Three weeks is a long time to wait between things happening, and those between times consist, as you know, of trying to get some excercise, making myself useful in some easy way (this week it was dealing with the remaining apples off the trees outside), reading, and watching the tube.  I started Mad Men, which is actually not boring at all, but exciting!  Should I ask the plastic surgeon if I can get the breasts of head secretary Joan?  They are about as impressive as I've ever seen...

Jon suggested a topic if I didn't know what to write about.  He said to complain about husbands!  A rich, full, rife subject matter all women can appreciate.  Well, even though he does annoy me with his penchant for wanting to take pictures of my bald, white, zitty head, he is actually doing quite the bang-up husband job, so I will take a pass this time.

My boredom has given me time to make some observations about having cancer, and to realize and acknowledge some strange thought processes.

1.  It's amazing how many times a day it occurs to me that the people I know are living their lives.  It is cliche, but I am constantly acknowledging the world going on without me, while I wait in my pajamas. Almost exactly these words float into my head at any given moment, as I remember that I have cancer and am doing my waiting, like a literal surreal chunk out of my life with solid, concrete borders.  This is hard to explain and I am not doing the best job of it.  I could be at soccer games, and doing normal things like other people, but it seems to require a lot of a certain kind of energy I don't have to chit chat, and be on the receiving end of concern.  Jon is out public all the time answering questions about me and being on the receiving end of peoples' concern, and bless him, he is good at it.  Don't get me wrong. I am so grateful to my community for caring about me.  It's just that as I said way back at the beginning, I am not a person who likes attention, so this will be challenging.  And it is.

2.  A thought is constantly popping into my head unbidden and unwanted.  It is this: He/she doesn't have cancer.  Believe me, I really don't want anyone to have cancer.  But I see people and it just pops in.  Even at the mention of someone it pops in.  The stupidity behind this thought is I actually have no fucking idea if the aquaintance I just saw at Safeway has, had, or has lost someone important to cancer.  Statistically speaking, all of that is as likely as not.   I feel like a terrible person having this thought, but I have it, like an involuntary reflex, all the time.

3.  I feel kind of infantilized at times.  Maybe it's because I'm bald, like a baby (though my two babies were never bald).  I have no idea how to explain why I feel this way, which leaves me an out and something to write about at such time as I analyze it to pieces and figure out how to articulate it.

4.  The most important one.  I am well aware that there are far, far, far worse things than what I am going through.  The 14-year-old son of an old friend died last week.  My lack of sleep this week is wholly unrelated to my stupid, fucking, boring cancer.

Tuesday, October 9, 2012

An up note

On the up side, I just bought tickets to The Book of Mormon.  January, from what I could calculate it will be between chemo and surgery.  Perfect!

No intellect

Life is wierd on a lot of levels right now.  One of them is kind of a Catch-22.  When this all started, it occurred to me that I have six or eight months of time I can't spend doing many of the things I normally do, but I had a pretty wide range of things I would "take care of" during this down time.

You can laugh if you like, but the range went from figuring out what I am doing with my life, studying for and taking the GREs, and figuring out and applying to graduate school, to knitting all the holiday gifts.  Seriously, I can't seem to do either of these disparate things.  Even I am laughing at my audacity, thinking I could deal with graduate school.  I can't even choose a pattern to knit on which I think I can stay focused.

My brain has lost some basic focus during chemo, which I am aware happens.  This, I am told, is one of the cumulative effects, so it will get worse over the four or so months, and probably somewhat beyond that.  I was visiting with a friend yesterday, and we were acknowledging the temporary loss of my intellectual life.  Being on the school board, as exasperating as it could be, was an intellectual pursuit for which I had a great deal of passion.  Issues were mulled and debated, decisions were made, data were pored over.  I was going to continue studying Spanish this year, but low enrollment precluded the class happening.  Frankly, I don't really know whether I would have been capable of learning right now.  I think I would have audited and just got what I could.  I was also in the midst of job hunting.  My resume was reworked, prime, and ready to go.  I knew I did a good job on that because I had a call about a good, decent job at Columbia River Maritime Museum the afternoon before I started chemo.  Yes, I think I could work many of the days of the chemo cycle, but at that moment there was a lot of complete unknown, and I was not comfortable trying to secure new employment.

So, I am paused, as it were.  I do read.  I read the new Michael Chabon, and am in the middle of the new Junot Diaz.  I know that both are excellent, and I know my other brain would have been passionately engaged, but I did not get fully in.  Both feel a little hard right now, which makes a former bookseller feel a bit pathetic.  Even these are not, you know, that challenging; they are simply good, literary fiction, the stuff I love.  I have really been wanting to read Jeffrey Toobin's new book on the Supreme Court, but I am uncertain whether the focus is there.  I am a wierdo who LOVES Nina Totenburg reading Supreme Court transcripts on NPR.  I loved Toobin's book "The Nine," and actually found it, um... suspenseful in a Supreme Court geek sort of way.  But these days I don't think that is me.

This lack of the intellect required even to knit is temporary, I know, and is another item on the list of things I just need to accept.  At least I can swim.

Sunday, October 7, 2012

Marathon day

It's Portland Marathon day.  Not that I was planning to run, I don't know whether I will do one again or not.  I like to think that sometime I'll do another.  Today, though, I am sitting with the ipad tracking three friends running, me from the relative comfort of my bed.  I'm deciding whether I can tolerate swallowing some Tylenol (why do they make Tylenols so large?) along with the pill I already took for nausea.  This seems to be the hard week, three days after treatment to a week or week and a half after that.  There is nothing to do, really, but tolerate it, and go outside for a bit at some point.

I am wishing I had done a bunch of marathons prior to this.  One was amazing, and kind of like childbirth, it teaches a person to get through the seemingly impossible to the other side.  Triathlons are somewhat like this, though because of the variety, not always quite as mentally taxing.   However, having only done up to the Olympic distance, I am well aware that the half Ironman and beyond would certainly provide that sense of clawing through the impossible.  Once the time passes about three hours, for me anyway, all bets are off as far as feeling sane during any of it.  The focusing is such a good excercise.  I wish those experiences were translating a little bit better to this one I am having now.  I guess when this winter/spring is behind me, I may be looking for a sense of the impossible again sometime.  There is something sooooooo satisfying about completion of these bizarre challenges, and without the disgustingness of it being about cancer I think any and all of it will be immensely fun.  You know, in that suffering fun way...

I am going to get out of bed and go for a run.  I have been intending this for the last couple of hours, so hopefully I am actually about to act.

Friday, October 5, 2012

Waiting, with Dog

Strangely, I am waiting to feel sick.  The masochist in me wants my side effects, which indicate to me that there is a lot of toxic, cancer killing medicine doing its work inside me.  Don't get me wrong. I am grateful for the giant infusion of anti-nausea drugs that give me two or three days of respite.  The nausea has not been a huge issue though, as when that stuff wears off, there are several choice bottles of pills sitting in my bathroom to take the edge off.

I did pretty well with the side effects last time.  Dr. Raish says that indicates the pattern for the duration.  Fatigue, and brain fog will be cumulative and will increase as the treatments progress, but in other ways what I have experienced should remain fairly consistent.

I make a tiny set of goals every day, which makes it sound like a vacation when I map it out, but by the end of it I am exhausted.  Yesterday's included a run, some yoga, making oatcakes (Jon's go-to breakfast grab), getting a shot of Neulasta (keeps the white cells high enough, also causes muscle and body aches), getting groceries, walking the dog.  I completed the list and was toast.

Today's list: swimming is at the top of the list, walk the dog...  Speaking of my dog, I need to admit in public (this being public) what a gift she has been.  I honestly don't know what I would be doing hanging around here so much on my own without her.  She is excellent company.  She takes her role as my constant companion extremely seriously, even though I believe the first year and a half of her life included little to no puppy interaction and lessons about such things.  I am assuming this and I don't know it.

I know she would have been hard to resist, but I also know that when I got her at the pound she was quite longterm hungry, covered with bloody mats and random animal bites, had clearly been a poodle/bichon mix living probably exclusively outside.  She adores us, even Tim, who is not overly interested in any animals.  Her challenge, as many of you know, is welcoming people into the house.  Her poodleness combined maybe with her past circumstances has made her extremely protective.  Tall men in ball caps don't get a warm greeting, and almost no one gets in without a fairly high maintenance dance including Milk Bone biscuits and patience.  That said, she has made first the year after I sold the shop and now this new and bizarre year much, much better.

Wednesday, October 3, 2012

Here I sit...

Well, I wrote most of a post and it disappeared.  Curses to the ipad keyboard.  This will be shorter and I will figure it out later.  It is pretty crowded in the little chemo lounge, though I will mention I am the only one sitting here with my buzzed, close to bald head exposed to the fresh air.

It is sunny out the big windows, I've got magazines thanks to Rachel (especially enjoyed Celebs and their Dogs).  I've got my phone and my ipad, snacks and a trashy NYC based mystery.  All pretty well.

The good news is that Dr. Raish measured my big tumor, which is, for better or worse very palpable from the outside.  Three weeks ago it was 6 cm in diameter and today 3 cm.  He mentioned that when you think volumetrically (which he does) the news is even better.  The lymph nodes feel quite a bit smaller and less defined, vague... which is good.  He also said the tumor feels softer, vaguer and less defined,  all to the good.

I am going to get a chest port either Friday or in two Fridays, which will administer the poisons through the larger vena cava rather than potentially destroying the smaller veins through which it is flowing as I type.

While Jon was sitting here he showed me a rejection email from the Bruce Springsteen people.  Unbeknownst to me he wrote and asked couldn't I come back stage, as I have CANCER.  While I would have been mortified, it was kind of a sweet try.    Jon has the curious and interesting trait of basically never ever being embarassed about anything.  Some of you are nodding your heads right now.

He also took me to Portland yesterday to visit the clinic's wig closet, oh joy.  I snagged a wig which wearing for more than 23 seconds caused me to want to open a vein.  I did snag a nice soft big bandana and a sort of cute hat, and bought one more scarf at a vintage place on 23rd.  I think I am either the bandana type or the commando type, which I need to practice doing gradually in more challenging places than the inside of my house or the chemo room.  It is just sooooo much more comfortable.

That is about the whole report today.  If I haven't mentioned our food brigade in a few days, this crowd bears mentioning every hour of every day.  It blows us away every single time.

Monday, October 1, 2012

Fed up

Well, I got fed up this morning.  Not to belabor the hair thing, but when I woke up it all felt as though it was just hanging off me.  I went to the pool and as soon as I put my cap on I knew my hair might all come off when I pulled it off.  I did not want to deal with this in the locker room.  As nice as all the ladies in there generally are, I still wanted to deal with it in private.

I managed to get the cap off without too much drama after swimming, but didn't dare shower there.  Basically I came home, gathered up a bunch of gear, went into the back yard, and scissored off what I could, following that with a complete self inflicted very short buzz with the clippers.  Surprisingly, as soon as I did it my head felt eons better.  It had been itching and tingling for days, and I was stressed every time I touched it and clumps of hair came out in my hands.

As fine as it felt, I knew it would be an illusion until I can get used to appearing anywhere in public.  So... I threw on a hat and went to the grocery store.  I wish I could say I was completely unaffected and without paranoia, but that would be a fat lie.  I hated every second of it, even ignored a couple of aquaintances.  As I've said here before and I'm sure I will say again... Oh fucking well.  My head does feel really, really good though.

Jon and I have a date tomorrow to go to Portland and peruse the free wig room at our clinic.  Maybe I will find something and maybe not.  I am looking forward to getting my chemo on Wednesday.