Month: December 2009

On the subject of Butter, Santa Hats and the 6 o’clock shadow

I needed 1 cup of butter this morning, which I had, but it was frozen.  In the no microwave house, that means either it has to thaw the old fashioned way, or…call the neighbors and exchange frozen butter for NOT frozen butter.  (Mind you, I didn’t want it melted.) When I was sure our friends/neighbors were up for the grand exchange, I grabbed the first hat I could find to venture out in the beautiful snowy day; it was the Santa hat E has been wearing since Rocktober.  NOW I know at least 3 reasons why Santa wears such a thing.  1.  It’s wicked cozy and warm, all that fur across  the  forehead and around the ears.  2. It’s incredibly stylish. 3. It is so much fun to move one’s head from side to side and flop the furry ball on the end back and forth…and when one has no hair, one is even more sensitized to that thrilling action.  I’m going to the attic to get the other one because I KNOW the boy will not share for long.  I don’t think he saw me when I went out.

Speaking of hair, I have a 6 o’clock shadow all over my head now.  This would be about 1 1/2 months since the last chemo infusion.  I read that hair can take 2 – 3 months to start growing back.  I’ll chalk that one up to my thick Italian genes!  It’s just stubble, shadowy growth, but growth it is, all over my head.  Previous to this experience I never mustered much in the line of facial hair.  I’m watching carefully to see if there any sprouts on virgin territory with this chemical bath I’ve been having.  Never-the-less I come out every morning and show my family my head.  After a while the excitement is wearing off for them, but for me, it could not be more alive.  SO I showed our butter swaping friends this morning and received the most wonderful excited response and head rubbing.  Prrrrrr.

So my hair returns just in time for chemo tomorrow.  Some have told me that their hair continued to grow during the second batch of chemo.  We’ll see.  I think I’ll wear a Santa hat when I go.

12/5/09

Axillary node disections take the fat with the nodes. You know, deodorant doesn’t usually feel very cold, but when there is little to no fat left in the old pit, it can really wake a person up.   I’m not exactly sure what I can do about that except SUCK IT UP ,  design a heated deodorant dispenser or stop using deodorant…hmmmmmm.  I wonder.

What beautiful days we’ve had recently.  I am feeling awake, fairly energized, my tightness is loosening slowly.  Acupuncture was pretty amazing yesterday and the provider was surprised at my energy.  My monthly chiropractor appointment for well care was great.  He said something about not believing how balanced I was in the skeleton/muscle part of things.  He said he was amazed that I was smiling and it got me thinking. (I know, scary, eh?)  Some people are so surprised that I’m doing normal stuff and feeling normal some times.

Breast cancer is not necessarily the worst thing that has happened in my life.   The period of time a person is in treatment is not always bad.  I mean there is nothing about diagnosis and treatment that feels OK.  HOWEVER, there are definite periods of time that I am not preoccupied, sick, scared, mad, depressed.  In fact MOST of the time I’m not any of those.  I think around cycle 3 one could see the wear and tear.  At that time there was more of those  difficult and very observable symptoms than not. However, now being on DAY 46 (wow) I am caught looking tired or maybe thin skinned at rare times, but overall my whole self is doing pretty well.  Ok, ok, more G.O. blither blather going on, but you know, life goes on.  THANK GOODNESS.

I’ve been going to work some days, working from home some days, taking the kids wherever, going to dinner, entertaining friends.  I’m parading around with my real body and am noticing only sometimes that I feel a twinge of self consciousness.  I notice sometimes that people who know what I’ve been through have to take a glance.  Some come right out and say it “let me have a look at you” (meaning, in my clothes, not the exhibitionistic stuff I mentioned previously).  These, of course, are close friends.  I’m totally cool with that.  I mean I want some people to be right up front with me.   Others don’t even mention it, which is cool too.  Everyone has to find their own level of comfort with my physical changes…once they get beyond that I’m still me.

This morning E and I went to the transfer station (AKA: DUMP) in town to bale newspapers for the Boy Scouts.  It’s one of their regular fund raising tasks every other week.  With 4 others we put the flattened papers into the baler and after it was all baled, it weighed in at 1635 pounds…the record there is something like 1650.  The boys were happy about that.  It was great to get out and move.  I noticed that when I bumped up against stuff I didn’t really feel it on my left side because it’s all numb.  Kinda a weird sensation.  I don’t feel as much afraid of contact any more as I feel like I have to be aware of contact because I can’t really gauge myself.  I guess what I’m trying to say is that it is not self correcting like bumping up against something on my right side.  Just an interesting observation for me.

So Monday starts the twelve 7 day cycles.  Cycle 1 Day 1.  It helps me to see it that way so I know I’m moving through this.  As I think about it, these shorter cycles  feel more like the sprints B was talking about.  I feel like we’re galloping toward the finish line.  My friend told me that when she was going through chemo her partner brought roses to her at each infusion.  The number of roses each time corresponded with how many more infusions she was to have, so as she moved through she’d get fewer roses each time.  I thought that was really cool.

My lovely friend who is organizing the food has been telling me that many of our meals on wheels chefs are all chomping at the bit to get the food rolling in again.  We’ve been saying that we’re doing ok, and let’s see what happens…and she says something like “I’m going to have to release the beast soon…”  The beast, of course, is the momentum this port of love has gained.  Endurance among all the angels continues.

12/1/09 Oncology meeting

P: Well, even the woman who can access my port and get a good blood draw every time had her day.  It was today.  With me.  She got a good draw at the very start and then it just quit on her.  What I saw in her that I did not see in the people trying to access it for the surgery I.V., was knowledge of how to work with this to ultimately fill the two vials for the lab.  “It’s positioning” she said, “and I have guys here who tell me how they had to do it last time, and it works every time…whether it is raising their left arm like so, or leaning forward…”  She had me raise my arm over my head, and ultimately reclined the chair so my head was, I think, lower than every thing else.  She  scored.

B: Oddly this was the same person who so badly botched one of our visits. I think she has been referred to as nickers-in-a-twist nurse elsewhere.  In the end we have to give her credit.  She had a bad few moments with us once, but, every subsequent interaction has been top notch.

P: We met with the Oncologist and had our usual check in about all that’s gone on and how we were feeling.  As planned we will start 12 weeks of Taxol, “a different chemo drug with less toxicity”, she said.  She wanted it to start within the month.  At first B suggested that we wait until after the holidays, but that would mean like Christmas week if we were going to start up ‘within the month’.  Ultimately we both agreed just to get the soonest appointment.  I start Monday the 7th at 7:30 am.  Soon enough?  I ‘d say.  This will mean 12 – 7 day cycles.

She referred me to the lymphodema clinic to get some instruction on ways to prevent arm swelling, and said she’d refer to the physical therapist there who is a specialist if I wanted to go to P.T.  We’ll see what Tuesday brings next week.  She also is referring me to the radiologist.  If only 3-4 nodes were involved she would not be recommending radiation.  She would if all the nodes were involved.  Because I fall in the middle, she said that the radiologist will help us make the call.  At any rate, if radiation is to happen it will begin after the chemo is over.   Apparently there is quite a synergistic effect if both are done at once and we are trying to minimize the harm here.  I really appreciate that, even if it means 4 additional weeks beyond chemo.  She wants to closely monitor whether I get tingling in my hands or feet and will either reduce the dose or change the drug if it starts to happen.  This can be a permanent thing that we all want to avoid.  (This is a form of neuropathy which could reduce sensitivity in my hands and feet and make rather mundane tasks a chore. )  Body aches are another reported side effect, but apparently go away when the drug goes away.  I won’t have any exciting colors coming from my bladder, alas.   I can live without that excitement.  The usual are possible:  nausea, vomiting, hair loss (oh gosh what will I do if THAT happens?), loss of appetite, fatigue…you name it.  These seem fairly generic to chemo, however I’ve been told by women who have done this, that Taxol is SO much easier on the body than the AC combo that I had.  Like the others, it can burn if it leaks under my skin.  Pleasant thought, there.  She did say that the WORST of it is behind us.  I will hold on to that one.

B: So, it looks like 16 weeks more of treatment hopefully done by April. I can’t over anticipate the side effects cause it is what it is and we won’t know that until we live it. I’m not sure this will have the intensity of what we’ve been through. I think I’m going to cast about for a different metaphor. Perhaps, remembering back to some of the experiences of my youth, backpacking in the Sierra Nevadas. Perhaps this is a 60 pound backpack, and I’m looking up at a series of switchbacks. Switchbacks have to be the most tedious of outdoor experiences for every gain in elevation you retrace what seems to be the exact same horizontal distance over and over. So, just do it.

P: This was all that we expected today.  If  we put it off a week or three, we are still going to have to deal with this.  I pray for endurance and will be hooking up for more acupuncture to help with the body stuff.  We will have to just take one day at a time and hope that we can have a fun holiday and winter with our family and friends.  GIDDY UP GIRL!

11/30/09

I intended to publish this last night, but lost my server…so I’m putting it up early this morning.  Happy December everyone.

Life has felt very simple and normal these past few days.  Our Thanksgiving was really fun with friends, terrific eats and lots of laughter.  At this point I have an appetite, and can taste everything.  My sensitivity to hots and spicy is a thing of the past for now.   Bring on the jalapenos and zippy mustard.  I can even TASTE my favorite jasmine tea which lost its’ luster around cycle 2.  (That was REALLY a bummer.)

Life after surgery is going ok.  I only have a band aid now over the hole where the drain exited.  I’ve noticed a slight bruising of sorts where the drain traveled in a “C” from my arm pit around to my sternum and down to my lower ribs at my side where the exit hole is.  The most difficult movement right now continues to be that snow angel wing movement.   I have been putting my hand behind my head when I read or lie down.  Even that is a challenge, but I can feel the changes every day, thankfully.  When I open my center by pulling my shoulders back, I feel great and can breathe deeply.  I can do some modified yoga stretches with my arms.

I speak about admiring everyone’s endurance, the love, support, calls, cards, prayers, which are all still coming on strong.  I see what I THINK is wear and tear on B who has had his sights on me and our kids with such intensity since August.  He is doing this his way,  “pickin’ em up and puttin’ em down” as he said in his entry back in October.  He does what is in front of him.  Right now I feel so much better, have more energy and tend to start bouncing around , sort of like a Tigger in Pooh’s clothing, and he’s exhausted some times….  I have to use restraint which can be hard for me,  to observe the space he needs.  Even though I’m working a lot more, I’m doing it from home most days, so I can lose myself in the fire’s glow, or spend some time with a kat or two or three, or I can see that the bird feeder needs more seed, or lie down for a quick little rest ANY TIME.   I have long periods of time where no one is asking anything of me, I am nourished by silence and am working at my own pace whether it is work-working, or healing work.

I guess today I kinda felt  like a puppy, wagging my tail at the end of the day when B came in after a long day away.  (Those of you who know us well will have NO problem visualizing that scene…especially with my new groovy colorful hat with the purple bells.)  This morning he woke and took A to work out together before school at O’dark:30.  He dropped her off at school and went to work, and did his usual noon workout.  He left work at 4:30, picked A up from wherever and came home.  He ate dinner and went out at 6:30 to be a scout master for some 15-20 young men in our town until 8:30.  He may argue that he is not “exhausted”, maybe it’s me whose exhausted watching him do his thing.

It felt good to serve my family a home cooked meal (enchiladas are challenging for me and I keep trying new ways to get them so they are not just a pile of yummy mush…if any one has a tip, please share!)  It felt good to get HIM the hot water bottle for his HAM of a hamstring that just won’t quit.  It felt good to LEAVE HIM ALONE when he decided he needed to go to bed before me (quite rare).  Of course, being the me that I am,  I’ll sneak an ultra warm snuggle when I finally quit, so the longer I put off going to bed, the warmer it will be under those covers.

What’s my point?  I guess my point is just as B has had to do what he could do for me during all this, he could not take away what was mine to do.  He has his own row to hoe in this breast cancer trail that we’re on, his own horse to ride.  I can’t do it for him, but I can be nurturing when I have it to give and I can observe his needs and respond accordingly, if I can control my Tigger-Poohishness.   Even with that challenge, I’m so happy that I am experiencing this today.