Friday, July 11, 2014

Hair, and Sponsors.

I've always found it fascinating, the amount of money and time that our culture devotes to telling us about how our hair can be softer, bouncier, lighter, carefree, sophisticated, playful....the list is as endless as the advertisements.

I've had hair down to my butt, and I've had hair an inch long, and now I have hair about 1/8" of an inch. It was starting to fall out just a few at a time, 10 here, another 10 or so there, so I went and had my head shaved.

My sponsor and I went wig shopping last week, and found a wig which looks very much the way my own hair does. Dark brown with a bit of grey through it. Wigs have come a long way in terms of looking natural, even when they are 100 acrylic. My sponsor and I had a great time in the wig shop, trying on Dolly Parton look-alikes, and all sorts of strange colors and styles, and laughing ourselves silly. We even got the saleslady into it after a while, she was picking out some hilarious styles for me to try and then the three of us would stagger around the shop in giggling fits, with the saleslady never getting past saying more than a gentle, "Oh dear, I think that's not you!" while my sponsor was more upfront,  at one point making me howl by saying firmly, "That's hurting my eyes, you need to take that one off."

I went wig shopping with my sponsor because I knew it would be fun with her. I'm not terribly broken up by my hair loss, I don't love it, but I'd rather laugh than cry, since it's part and parcel of the chemo I'm getting. By shaving my head early into the process, I gained a little control, and that felt good.

Wig-shopping with my sponsor was a pleasure. I feel completely safe with her, I can relax completely, say exactly what I'm thinking, and get good honest loving feedback. And lots of laughs. Just thinking about her brings a smile to my face; she's great fun, and excellent company. My first sponsor down here was wonderful while we were in that relationship, and I feel a heartfelt gratitude for all of the help and support she gave to me, and now we are friends, and talk on the phone once in a while. We've talked about what happened, she's apologised, and I hold no grudge or bad feelings about it, but it did affect my ability to trust her, and it was time for a new sponsor. So it goes.

I was just incredibly lucky enough to know someone who I wanted to be my new sponsor, and she accepted. A good sponsor is a friend, a confidante, and for those of us who are long-time members of this program, a lovingly honest reality check. I can write her an email about exactly what's going through my head, and she will hear me, validate my feelings, then offer her ideas. And because I love and respect and admire her, I'm completely openminded to the way she sees it. Already, in the short time we've been sponsor-sponsee, she's been a comfort and a help in ways too many to enumerate.

A sponsor is a gift we give to ourselves in this marvellous program.

Friday, July 4, 2014

Control and Perfectionism.

I was writing to my sponsor last night, and mentioned that I can still be powered by those two engines of insanity - control and perfectionism.

I can detach enough from myself and my emotions at this stage, to be able to watch the way having cancer, and being pulled into the whirlpool of treatment, affects my desire to control, and awakens the old demon of perfectionism.

For now, much of my time is not my own, through hours spent getting chemotherapy infusions, going for blood tests, appointments with doctors, nurses, dressing changes for the PICC line - the list seems endless, but then when I have a couple of days with no appointments, I feel a gleeful freedom.

After so many years in Al-Anon, I've become rather skilled at letting go - this has been of huge importance to me since the diagnosis. I've learned to live in the moment, and to take pleasure from these moments as they happen, not allowing the spectre of what may lie ahead to poison my joy in today.

A friend is coming to take me for lunch today; we haven't seen each other since before I was diagnosed, so she may be expecting me to look ill. I have had to laugh at how many of my friends who haven't seen me for a while exclaim in surprise "You look so good!" Cancer is a loaded word, and with it come many assumptions.

My sponsor and I are going wig-shopping tomorrow - I'm really looking forward to this, she has a wicked sense of humour, and her many years in Al-Anon allow her to see the silliness that surrounds us in daily life. I know that I can be truly myself with her, whether that be me on a day when I'm working my program and managing to balance quite nicely, or on my not-so-program days. Tears or laughter, she accepts them all, and that is a great gift.

I'm grateful for this wonderful program, for allowing me to be having a conversation with Robert, and know to stop and laughingly "out" myself as a control freak, telling him to do whatever he's doing however he pleases, and I will be quiet now. When I'm in HALT, (hungry, angry, lonely, tired) my desire to control can begin to overcome me. I can focus on it, or let it go - my life works well, or I stumble, depending upon which I choose.

Perfectionism is another character defect I have had in abundance. I see that it was inculcated in childhood, when a higher mark was always better, and nothing was ever enough. I was never enough.
That feeling stuck with me through most of my early years in Al-Anon.  Anxiety can cause it to start up in my head again, that feeling of having to do everything and anything perfectly, so that no possible criticism can be levelled against me. Fortunately, again, I've had sufficient experience in Al-Anon that I know not to allow that feeling to override my common sense. I can feel it, validate it, then set it aside, and do what I need to do to look after myself.

Twice since my diagnosis, I have asked to see another doctor, first the surgeon, and then the medical oncologist. I didn't feel comfortable or confident with the first doctors I saw, so got up my nerve to ask for a second opinion. I'm learning that I need to be willing to advocate for myself. Cancer Care here has a wealth of information and help available, but in order to access it, I have to admit that I need some extra assistance, that I'm not perfect, and I can't manage all on my own. What a relief that is.

Wednesday, July 2, 2014

A Reader Asked About Depression.

A reader wrote to me noting that "depression" does not appear on the topic list to the right side of my blog, and wondering if I could please address this topic?

I don't write about depression because it stopped being a state of mind for me many years before I ever started writing this blog in 2009. I don't believe that it's possible for me to feel depression and gratitude simultaneously, and I've had heartfelt gratitude for so long now, that I have a hard time recalling just what it was like to be depressed and angry.

Even this bout with cancer, and the possible cutting short of my life span has brought me to tears of gratitude; I have so much about which to feel grateful. I have my beloved Robert, my brother, and sister, my good program friends, the health care system which is doing its best to keep me well.  I may wake up feeling some fatigue with chemotherapy, but I wake up feeling, and that's a gift.

I believe that our attitude is our choice - I choose whether or not to look for that which enriches and fulfills me, and to let go of what doesn't work well.

Rather than write about depression, which I can't imagine helping anyone, I prefer to write about the positives in my life, and share with you all, joy, freedom and serenity.

Friday, June 27, 2014

First Chemo Yesterday

Yesterday was my first chemo treatment. When we'd seen the oncologist for our first meeting, she said that some very tiny percentage of the population lacks an enzyme to deal with one of the drugs she would be giving me, and because of that, they die. Their very first chemotherapy treatment proves fatal. And the only way they discover this is when it happens, there is no way to test for it!

That was disconcerting, to say the least. We both went in yesterday morning wondering if I'd survive, or be in the group lacking the enzyme. Apparently it happens immediately upon the start of the infusion,  so within a few minutes, they know you're fine. I sat in a quite comfortable reclining chair, with pillows and warm blankets, and dozed through part of it. I talked to my neighbours, who were a very nice older couple from one of the islands around here. She'd had some vague bleeding, and went to her doctor to receive the devastating news that she has cancer.

I came home from chemo and slept for most of the rest of the day, getting up at 11pm to eat a little cottage cheese. I had hot and cold sweats, but other than that, I was just exceedingly tired.

So none of my not-very-invasive fears of what it would be like, came to pass. I'm hoping things will continue to be this way. I'm attached for two more days to a little bottle contraption attached to the PICC line, which is infusing more of the one drug for another 46 hours after the in-hospital treatment.
Robert was willing to be trained how to detach the bottle when it's empty, to save us a trip to the hospital for a ten-minute procedure. 

He is such a loving comfort to me, with his willingness, his loving caring, and his wicked sense of humour. We were lying in bed this morning laughing, and I felt that same enormous gratitude that the gift of his presence always stirs in me.

Yesterday's lesson was another one in gratitude for the wisdom of Al-Anon. Apart from a few qualms I've already mentioned, I was able to detach from the future possibilities, stay in the moment up until it was time for chemo, and be happy and relaxed. I was able to push intrusive thoughts out of my mind, and as my first sponsor used to say, "... firmly shut the door on them."

When I consider what going through this would be like, did I not have close to 30 years in Al-Anon, it gives me pause. I used to live in the future, or in the past, with most of my days sliding past me almost unnoticed, while I railed over the past hurts, losses, and sorrows, or trembled and raged in fear of what my future might hold. I was a supremely negative person. I have changed so much as to be almost unrecognisable as that terror-stricken woman with a non-existent self-esteem.

And I owe it all to the wonderful program of Al-Anon.

May your Higher Power be close beside you, and may you feel a sense of delight in today, because as a wise old AA gentleman used to declare:
"Today is all you get, so you better make it a good one."

Wednesday, June 25, 2014

PICC line installed today.

Today we went to the hospital at the edge of the city, (where I had the second operation, and from which I went home believing myself to have very little time left to live,) and had a PICC line inserted. This is a peripherally inserted central catheter, and I was a little anxious about having it done, because the line is put into a vein in the upper arm, and advanced until it's in a larger vein close to my heart.

These lines are used to give chemotherapy, avoiding the continual insertion of an IV into my arm every second week and then withdrawing it two days later. With care and good hygiene, a PICC line can be left in for months without problem.

I was a little anxious when we first started, but the specialist nurse was a warm and friendly woman, who laughed at my silly jokes, and was very soothing and calming. Apart from a slight pinch when the local freezing was used, it was all painless, and since I made a point of not watching while she did it, quite peaceful. I looked at the ceiling tiles, asked her about herself and how she got into nursing, and enjoyed talking and laughing with her.

On this journey, I've met some amazing nurses. I like to ask them about themselves, and have been interested to hear the various ways in which they've arrived in the nursing profession. Some wanted to be a nurse since the age of six, and never wavered. Some applied to nursing as an alternative in case they didn't get into their first-choice program.

Al-Anon has taught me that everyone has a story, and they are all fascinating, if I take the time to listen, and to really hear. I like to make the nurses laugh while they are looking after me, it's fun for us both. I figure they hear enough complaint; if I can lighten their day with some laughter, I feel better for it.

Last night the meeting topic was "detachment." I realised that over the years, I've become rather skilled at this, and I no longer carry that which isn't my burden to shoulder. I heard a Polish proverb used to describe detachment last night:

"Not my circus; not my monkey."

Friday, June 20, 2014

A Different Viewpoint.

This week I met with an oncologist, who after introducing herself and talking for a few minutes, asked me what my understanding of my illness is. I explained that the surgeon who had done the operation had been very negative about my prognosis, and given me very little time. He told Robert directly after the operation that had he known ahead of time what was in there, he'd have cancelled the surgery.

She was taken aback.

The cancer has not reached any of my major organs, but it is in my lymph system. The doctor explained that because of this, she considers that I am a good candidate for chemotherapy. If the cancer responds to the chemo, as it has a good chance of doing, I could live for several more years.

We were stunned; the surgeon had given us both the impression that I was on my last legs. This oncologist said that she has patients who have been living with cancer in their lymph system for years, with chemotherapy keeping it from metastasising any further, and she believes this may be a possibility for me.

This is the first hope we've had since the surgery on May 9th. We left her office feeling almost giddy and at the same time, a little choked up.

It's very strange to have been given the impression that it was pretty much all over, only to go see another doctor, and get a completely different prognosis. This had been a roller coaster ride, for certain.

I went to a meeting the next evening, for the first time in about six weeks - it was heavenly. So much love and humour and wisdom.

I go to get a PICC line installed in my arm next Tuesday, and start chemo on Thursday, so am working my program, and hoping that the oncologist's more positive outlook is the correct one of the two.

This is one of the most pointed examples I can recall for myself, of the way a different viewpoint, outlook or attitude, changes everything.

Saturday, May 31, 2014

Protestant Work Ethic, or, How To Relax.

My dearly loved brother is an economics professor at a university, and has an enormous workload, even though he's been tenured for years. Much of this workload is self-assigned; he does considerably more preparation for his courses than many other professors, who urge him to use materials from previous years, rather than start anew each year, trying to make his teaching fresh and interesting.

But he and I are much alike in that we both have trouble relaxing and doing nothing - we were raised with "Protestant work ethic" (hard work and effort are praised above almost all else.)

I'm 56, he's 57, yet neither of us is fully comfortable with the idea that we are allowed to have time in which we do nothing.

 Almost as soon as I was released from hospital this time, I was itching to get busy doing something. Accomplishing something. I have great trouble with days at the end of which I cannot say, "Well, at least I got ______ done, today." When I am asked, "What have you been doing lately?" and I can't reel off a list of things completed, I feel uneasy, and vaguely guilty.

My brother and I were laughing in exchanged emails recently: I told him about being two days out of hospital, but managing to get some sewing finished, and he told me about wandering around his place feeling slightly out-of-sorts before finding a fiendishly complicated economics book which he sat down to read. School is finished for the year, and with it, his obligations - and as a result, he doesn't quite know what to do with himself.

We're both nuts.