Month: January 2010

Is it me or is it chemo?

I marvel at whether what my family experiences in my behavior is actually chemo affect or just me. I don’t know if there is a way to tell. It’s so easy to blame the chemo for the crap. (as IF I didn’t have crap before all of this)

As far as the general body stuff, you all know that the dryness is still the biggest thing for me.  My family benefits on occasion because I MAY just offer to moisten their dessicated epidermis before they shed like a snake.  One has to catch me at a very generous moment as I quickly get bored with the task of massaging others.  But when I do, you never know,  you might get a good long one out of me.  Rare, but possible.

My behavior is under the microscope at times. Perhaps those who love me are so sensitive to the changing tides, concerned for my well being, or whatever.  I don’t know how much of this behavior is genuinely me (I suspect 95%).  It is so great when I feel normal because life is normal and the “demons” as A puts it, are not in everyone’s face. It gives my kids and B no reason to consider me sick. On one hand, it’s great when I hound my kids about helping out or say no to something they’d prefer a yes to. It means I have enough energy to engage, so it feels great/normal for me, but not necessarily great for them of course.  That’s happening more and more of late, I’m feeling more active in the parenting role.  But I wonder some times if my clearly “affected” days eclipse the days when I am highly functional and normal.  You know the looks everyone gives each other when the pink elephant walks into the room?  I don’t want that to happen.  YUK.  But if they look at each other with “oh brother!” when I crack one of my jokes, or make a face or giggle when I probably shouldn’t…now that’s me. 

There are days when people say “I can’t believe you’re doing this” (like shoveling the 16 ” of snow we received last Saturday night with B who turns everything into a workout, or hiking the mountain in the snow on New Year’s Day, or going to work, or preparing food with energy and love, or staying up past 7:30pm). Observing me on these days may be confusing or concerning for some.  I don’t know.  Similarly, observing me cracking the whip with my kids (can you even IMAGINE that??) or getting irritated when I’m tired and should be in bed, could produce the whiplash I and others referred to in previous entries.  Perhaps when I’m doing or looking like something that is not pure G.O. it reminds them that I’m human like everyone else.  Darn it anyway.  As far as I can recall, I have always gone to bed early and gotten cranky when I was tired.

I vacillate between laughing about chemo brain space cadetism and defensiveness about the assumption that whatever I am doing/experiencing must be chemo affect.  I suspect that it will all come out in the wash and sometime next summer when I’m spazing out somewhere, dancing in the middle of a crowded sidewalk, singing a goofy song, we’ll all have a better view of me sans chemo.  I will have NO alibi and for that matter, neither will anyone who is seen with me.

Today is Sunday.  I  stayed home yesterday like a good girl, but I was busy as usual.   Today I also stayed home.  As B was leaving to pick E up from a friend’s house to take him to jujitsu, I mentioned a book that A told me I had to read before the end of January when it was due back at the library.  B said “Why don’t you just read the book?  You were all busy yesterday and crashed last night.  Why don’t you really just sit and read this morning?”  He walked out into the cold morning and A was soundly sleeping.  I started by doing my favorite thing, I made tea and got the fires rolling.   I sat in the chair and I provided a lap for our girlie cat who is JUST learning after 3 years that we are more than just can openers, and read the book.   The whole book.   Actually B and E arrived back home literally as I was on the last page.  A came downstairs just a short while after this.  It was lunch time and I hadn’t raised a hand doing chores or finishing the paint job on the window in our bedroom.

This is pertinent here for several reasons.  The first is clearly on the subject of is it me or is it chemo?  This could not have happened on the AC chemo combination.  I could’t read two pages at one sitting.  In fact before chemo it was a rare thing to read 200 pages in a day.  The next reason has to do with living with teenagers.  The book is among one of the best coming of age books I’ve read.  It’s called the perks of being a wallflower by stephen chbosky (1999).  As we are dealing with my medical business, our children are dealing with adolescence.  What a bum rap for them.  They have managed really well in my opinion, but it’s got to suck at times.

 Both are maintaining their position on the high honor roll, both are involved in some activities, both are kind to others and seem to be making choices that would make a parent happy.  I have asked them both to consider writing about their experience here, and hope at some point that you will have the fortune of learning from them.  Those of you who have read through the whole blog have seen some entries from E already.   For now, I’ll just say that parenting during treatments is a complicated thing.  I never want to be a burden on anyone, especially my children.  It’s hard to see a parent vulnerable, and they have been through about 5 months of it so far.  I’m so happy to say that at this point the most vulnerable they see me now is tired and bald (well, fuzzy)…so far anyway.  Earlier was tougher on all of us.

I’m grateful to A for recommending the book.  It reminded me of my own coming of age, and I got a vision of A’s possible journey through several of the characters.  I feel that when I told her that I took the time to read the whole book this morning,  for the first time in a while she may have felt like she was my priority and this diversion we’ve been on was not completely monopolizing me and my time. 

“It” was me today.  As I prepare for tomorrow’s “invasion” number whatever, as I am noticing what may possibly be cumulative fatigue, some subtle gut stuff and really tight shoulder/neck muscles, as I hang out with the best katz in the world and invite B for a dance by the fire, as I look at E’s latest math paper and talk with A about her favorite characters in the book, I am feeling mostly like me.  I am staying as in the moment as I can get.  The crackle of the fire, the purrrrrrrs from the katz, the I love yous from my family, the continued support from people who really care about me.  All of this is what will help me shine through as the chemo does its job and ultimately leaves my body.

1/8/10

Feeling better means getting back to work means having less time to do the things I’ve come to realize are SO important to me.  And so it is with blogging.  I’ve felt real good this week, and have been back to work AT work most of the days.  When I picked my kids up the other day after school and took them shopping for some new jeans (they just keep growing for some reason…the kids, not the jeans), we got home after our usual dinner hour and I was exhausted. Oh yea, and that morning D and I did our walk at O’dark:30.  Pretty much useless, I ate the great meal B prepared, and crashed in the recliner, a puddle of mush.  Yesterday I worked another whole day and thus, I decided to work from home today…but not until after the chiropractor, food shopping and a nice ski with D and our goofy and swell canine companions.

Growing hair is a very serious business.  I think the next baby I see I will appropriately hail them for their hard work!  Now that I have a little more than a 6 o’clock shadow, I’m antsy for more…MORE…MORE!  I never even thought about the process probably because A (our first child) had about 2 inches of hair when she was born and with E, the poor neglected second child, I don’t think I observed as much about the fuzz as I did other things.  So this brand new hair is really funky and has started to have a mind of its own.  I can keep my hats off in the car as long as the heater is on and at home, much of the time, if I’m close enough to the fire or the wood stove (or having a hot blast).  It’s liberating, truly.  I must remind myself that it could all fall out tomorrow, though not the usual outcome of Taxol as a second round chemo drug, apparently.

B has referred to Taxol and radiation as the suspenders part of treatment.  I feel I’m somewhere in the bog of life between “Oh man, at least this isn’t as swampy as it was earlier.” and “Hey, is that high ground over yonder?”  I just keep walking, just keep moving, just keep trudging, just keep laughing, just keep resting, just keep waking to face each day.  SO another character that could give you a sense of who I am is  ‘Dory’ in FINDING NEMO.  She endears the hearts of some viewers and annoys others.  BUT her  “Just keep swimming, just keep swimming….”  song keeps coming to mind as I move throughout my day like when I still catch myself saying “wow this is really happening” as I glance my fuzzy head in the rear view mirror.

I cannot / will not spend a lot of time dwelling on what we have been through over the past 4-5 months.  Nor am I spending much time thinking about a reoccurrance, no more than I would wonder about getting hit by a bus each day.  I no longer feel like I have breast cancer, but I  am reminded every day by one thing or another.  My body is my body and I think I’ve adjusted as much as I can at this point.  I’m feeling really good still about the decision not to do any reconstruction as I continue to heal and regain my flexibility.  I feel waiting on reconstruction has given my body time to heal from one thing.  I have not been wearing many layers because of the hot blasts I am getting several times a day.  My usual turtle neck and sweater winter wear is still in the trunk in our bedroom.  I’m wearing one layer, often just a long sleeved cotton shirt, and have felt fine about my body.  It is like I’m not even thinking about it any more.  As I’ve said before, I suspect this will resurface in the spring / summer when I wear my bikini everywhere I go.

So in the area of how I’m doing on Taxol after 5 infusions,  I’m definitely feeling the extra dryness in my skin that is more than just winter.  I’m not feeling tingling at this point in fingers or toes, but am asked that every time I go for the infusion. It is a side effect that I am taking very seriously as neither I nor our oncologist want permanent damage from these suspenders.   My several times daily application of skin cream entails pretty rigorous rubbing to stimulate circulation and keep my nerves alert (my words).  My nasal passages are still like the desert.  I have caught a cold this week, but it feels normal for a cold.  I am tired and am intentionally laying low this weekend.

I didn’t blink and neither did she

One of my coaches is telling me today was #5 of 12.  I saw that in my drawing as the mandala or circle is filling with images of my progression.  I love how this is evolving for me.  The static nature of image #1 and the movement through to today’s image which does not feel static to me at all.  P.S. I was not naked during the infusion…well, in the spirit of being honest, under my clothes and boots I was.

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Another non blinking moment happened today.  I was sitting in the waiting room waiting for my lab appointment and a couple entered.  It’s so interesting to see how people do things, isn’t it?  Many, many times when a male is the patient and he is accompanied  by a female , she has the clipboard with the weekly nursing assessment form on it, and she proceeds to fill out the form.  So this couple fell into this process, she interrupted his cell phone call to ask if he’s had any constipation or diarrhea this week…does he feel any pain today…is he afraid he migh fall?  She had beautiful moca colored skin, royal blue pants and a light blue top on.  I loved the colors immediately.

I went into the lab, two vials filled with no hiccup on the port  draw and back into the waiting area by the fireplace awaiting my nurse escort to the chemo suite.  The woman mentioned above looked at me and said “I think I know you…how do I know you?”  Here I am with my head wrapped in a batik scarf, a purple watch cap over that, and a flap hat with great tassles on my head (so much for being incognito!) …I said something like “well if it is from a work memory, I’ve worked at the same place for 20 years”.  I told her where I worked and we figured out that I had done a workshop for teens in 1988 and she was on of the facilitators.  “We made masks. I still have mine.   It was and is to this day, very important to me.  I just wanted you to know.  I’m sorry to meet you here…”  Her partner was called in and the conversation ended with her holding her hand out to me in a very kind gesture.

I went back to chemo chair #5 (no view this time) and started doing work related stuff.  So cool that I can work (if I feel like it) during these treatments.  I don’t really like to admit that I’m a multi-tasker, which I am at times, but I do like that I don’t always have to use my earned time when treatments happen.  It’s tricky working on a lap top when I’m getting scanned or under anesthesia, but chemo infusions of this nature are another story.

I took out my pad once the chemo part of the drip started and the benadryl effects were wearing off  and the above image just poured out with no thought on my part.  This image enchanted me from the first mark I made.  So as I was drawing and rocking out with my music, the woman mentioned above came over and tapped me ever so softly on the shoulder and asked if I minded if she visited with me for a few minutes.  I unplugged myself and closed my pad to give her respectful attention.  I felt blessed by the overture.  Here’s a synopsis of what she said:

I am so sorry that I’m seeing you here after 22 years but at the same time I feel like it is an opportunity to tell you something that I may never have had the chance to tell you.  I was always the white sheep in my black family.  I didn’t feel like I looked like either of my parents, and my natural talents were from somewhere else apparently.  It was an ok childhood, but I was unsettled.  When I made my mask with the teenagers that day, I saw my face for the first time in 3-D.  I saw my father here (she pointed to her chin and her nose), my mother here (her eyes), my father again here (her forehead).  It was so profound it took my breath away.  I had to excuse myself for a minute or two to gain composure.  For the first time, what was I, late 20’s?, I felt that I belonged to these people on a very deep level.

I still have the mask hanging in my house.  When I have days that I just don’t feel like I fit, it reminds me that I belong to that family.  You were just so postive for the children in the workshop, and I benefitted in a way I never imagined I would.  I wanted to thank you.

We spoke briefly about how amazing mask making can be and about the fact that she has been with her husband for 30 years now.  A few minutes later she said “Can I get you anything?  Some tea or something from the kitchen?”  and I graciously declined, pointing to my water and thanking her for taking the time to visit with me.  She got up and touched my shoulder again and joined her husband at chair #1.

This infusion went without a hitch.  I was struck by how fast the time went and I was out of there in 3 hours flat.  The nurses marveled each time the I.V. timer went off, and checked their watches to be sure 15 minutes had elapsed for whatever drip.  Sure enough the timer was working correctly.  It really flew.  I completed my drawing and it was time to have the port access removed.

I went to work and attended staff meeting and a meeting with a colleague in person.  I’d planned to go home to rest and work the rest of the afternoon there, and kept to the plan.   When I got home my eyes were really in need of shutting.  The katz were very pleased to find me in bed at 1:30 or so.  I slept for maybe 1/2 hour and felt rested, and just hung out with the felines for another 1/2 hour before getting back to work.

I have noticed that I may be irritable on occasion.  Skin’s dry. I am chewing on these great ginger chews (the only ginger stuff I actually enjoy).  I am eating more frequent, smaller bits and just trying to be aware of my gut.   I had a little headache going into chemo, but drank more and ate some and it has subsided.  I feel, like other infusions, that I’m aware of the drug(s) going through my system.  Not uncomfortable, just more aware of the path through my body than usual.  I feel like I’m dodging the side effect radar.  If I stay low to the ground and speak softly, maybe I won’t be detected.

I am humbled and so grateful that I WAS detected today by someone who had a wonderful gift for me.

Open to a New Day

Finally I’ve finished the drawing from cycle 4.  I feel open.

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Since we moved to our home 12 years ago, we’ve been saying good bye to the old year and welcoming the coming year with friends in a way that has become so dear to me.  We hike up a mountain near our home together, send wishes for the coming year out to the fresh air and beautiful vista, eat clementines and ultimately end at our home for a feast.  This week there have been warnings of a storm of the century which had some of the usual attendees hunkering down in their homes.  It was beautiful to wake to a light snow, branches shadowed in white, and the knowledge that it’s only Friday!

The festivities actually start out on New Year’s Eve when we make the capaleti that my paternal grandmother served on January 1st.  We have been blessed over the past several years to have some friends come to help.  As with most old Italian fare, making capaleti is a labor of love.  It has become a ‘don’t blink or you might miss it’ experience for me since my kids and friends have joined in.  We talk, we laugh, we get flour everywhere.  I consult with my favorite picture of Pop and I on the texture and thinness of the pasta.  In years past, Mom and Pop would be making their capaleti around the same time we were, and getting the dough as thin as possible was somewhat of a competition.  There are other experimental dishes that B and I each make along with cheesebread, sausage bread, antipasto and delectible contributions from those who join us.

Today we joined our friends and the walk up the trail was spectacular.  The white blanket on our trail took my breath away today.  I was with some of the people I love most and out in the beautiful woods.  My energy was good, I only halted when I got a hot blast and had to pull over to shed my hats.  At the top we ate clementines, took pictures, spoke about letting go and opening to the new.  Kids climbed trees and others tried to catch some zzzz’s on the snowy rocks.  I quietly scattered the hair that was shaved off in September where I hope birds might find it for their wintry nests.  I took my hats off and let the snow melt on my head.

At home the fire was just enough and the company more intimate than many years.  The capaleti got the best ever vote, finally we used the right size cutter, got the combination of ingredients right and the simple broth was delicious.  B’s Jalapeno Pork Stew with pickled onions and our vegetarian options of Curried Peanut Soup with fried bananas and an Indian curried black eyed peas were scrumptious!  But the most delicious part of the day for me was my feeling of being cradled by love.  Don’t blink or you’ll miss that one.   I think I can speak for those who attend this each year.  It’s a great way to start anew.

Today I don’t feel like I had breast cancer.  I was not reminded much that I am in the middle of round 2 chemotherapy.  I awoke in the quiet early of a snowy January 1st morning.  I hiked with friends.  I hugged my friends.  I laughed and heard the laughter of children.  I made angels in the snow.  I had no trouble letting go of 2009.