It's the most wonderful time of the year

“It’s the most wonderful time of the year” goes the popular Christmas pop song. I actually really like Christmas.  Perhaps it is the good reason to bake and indulge with special foods. Of course the gatherings with friends and family are enjoyed, but I am aware this can cause a lot of stress: to make those now expected cookies, to buy the perfect gift, to create time to fit in everyone. So much of this is socially constructed and idealized.   And, in my head there is often the desire to choose the perfect gift (as a result I gain delight and gratitude of the recipient), sit by the perfectly decorated tree, to create the perfect Christmas get-togethers and meals. I realize this is not only for Christmas.  I’ve been feeding the ideal of perfectionism in my life for a long time.  Somewhere, probably when I was quite young, I assumed I would meet someone who I could love, marry, have a child and live happily ever after (or live a “normal” life where there are no major tragedies).

There is this sense of entitlement, rightly or wrongly, that my life should be content. Even after experiencing so much in so few years, I have often half-heartly joked I should now be free of any further misfortunate – like a get out of jail free card for the rest of my  (hopefully) many years. But is this realistic?  Would I be living and appreciating life in the way I do now if I did not experience hardship?  Or perhaps what appears as misfortune has actually provided me with something I needed and I wouldn’t have otherwise.  If I imagine a life where my husband did not die and I did not have a breast cancer diagnosis, I suppose I would have been engaged in family life and work and little else.  With my husband’s death, I turned to art and started exploring art which provided a much needed salve on my emotional pain. With my own cancer diagnosis, I have had more space to process my husband’s death, I’ve explored writing and art further, I have been more available for my son.  All of these are benefits beyond the obvious losses.
I suppose this is my argument against believing I need to create perfection - which I continue to wean myself off. Even through things appear negative, that perhaps they are good.  Perhaps I wouldn’t know such joy if I didn’t know such despair.  Perhaps all is perfect just the way it is.

All in the Timing

The past couple of weeks have been a whirlwind of activity. With Halloween, I spent a large number of hours making a dragon costume for my son.  It looked great and I think he had a lot of fun, and now has lots of candy in his trick-or-treat pumpkin.  There have been a lot of social activities and a spattering of medical/paramedical appointments. Pacing my days seems to be a challenge.  I think I have planned/managed my time, but then again, I find I have over extended myself.

I decided to visit a friend out of town, deliberately planning to drive in the mornings as I have more energy then and could rest with my son during his afternoon nap time (thankfully he still naps). I didn’t realize how tired I would feel after the few days away.  I found that after I was exhausted for days.  Ultimately I have figured out at this point in time I can’t really handle more than one appointment, event or activity per day, and I still need a two hour nap.

I’ve been looking at my energy like a glass of water.  Every day that I have a decent night’s rest I start with a full glass. Sometimes I don’t start with a full glass because my son has woken up in the middle of the night or I have a busy brain and have not settled down to sleep as well as I could. Each activity uses some of the water in the glass until it is almost empty and then my nap is a refill.  This analogy has been used with as a candy jar on the Livestrong/Oncolink Care Plan website. Even though I have started to do a little jog or exercise, this does not re-energize me as before, it takes a certain amount of energy and has to be weighed carefully as every other activity.  Over-extending myself may initially result in an abundance of fun and enjoyment of activities and outings I love to do, but then I need to set aside time the following days to recoup afterwards.

This is the most obvious change since treatment.  It is strange, but really the treatments have changed my body in many ways.  And, I don’t know if it will be permanent or passing.  Recently I noticed I bruise, cut easily, my veins are more difficult to access with needles, in general, my body’s been delicate since treatments. This creates a whole new level of needing to be cautious.  I may feel I can just go back to activities the way I would prior to the cancer treatments, but I am finding this s not so.  There are the obvious results of cancer treatment (the hair loss including lashes and brows – now growing in quite well), the side-effects from treatments and so forth, but there seems to be a whole layer of subtle changes that doctors don’t really share (especially before one embarks on these intense treatments) that can exist months, possible years or permanently after treatment. Like my finger tips and toes remain numb and that should clear up within the year, but may not. Then there are the drugs that probably cause infertility, which many younger woman arrange to have eggs harvested and frozen so they can try from pregnancy later, even though pregnancy later in life is a risk factor to breast cancer.

What all this musing leads to is again, relating to being present in the moment.  Can I live fully in the moment not comparing to what I was able to do prior to treatment?  Can I build myself up to be even healthier, with stress better managed, being in the moment.  Truly, as Thich Nhat Hahn writes ”with every in breath and every out breath we each are different.” In a moment, our world can be different, sometime greatly: for example with my husband’s last breath, my, and my family’s worlds were changed dramatically; or minimally: with the breath I breathe in this moment, I am digesting my breakfast and something changes within my body, although, perhaps undetectable by me. I hope in being in the moment, I can stop looking at what was, or how my body was, and start being what I need today.

For Love or Fear

I have been wondering about whether to keep this blog anonymous.  There are reasons to share my blog more openly. I am thinking about shifting my therapy work to be more focused on working with cancer patients at their families, if possible.  I would not want to do this full time, for it to encompass that much of my life, but I do feel I have a lot of knowledge and experience to share and give to others. If I do more within the “cancer community”, certainly having a blog of my experiences could be useful.  There is also another potential project I’m starting to become involved in, about sharing my life process/experience in a more open public way, so having my blog attached to my name could be a good idea. My original reasons for keeping the blog anonymous were fear based.  I didn’t know what family would think; I didn’t want my work to know how I was perceiving all of my life; I don’t want the information I present here to be used against me (i.e. future work or otherwise).

Regardless of whether blog anonymity is helpful or a barrier, I am realizing this is another element of letting fear control my life.  I am starting to re-evaluate how I see my life and what I deem important.  I am re-evaluating my decision-making.  It could be as simple as telling myself that my bills “should” or “need” to be paid.  How about owning this more and not feeling like it is a burden? “should” and “need” certainly imply bill paying is a burden.  I want to pay my bills.  Really I do. Besides maintaining a decent credit rating; how else do I keep a home that I love, my car insured, on line services for posting this blog?  I want to have these things or be able to do certain things; then I want to support all aspects of each.

As part of this process, I am questioning my motives for anonymity.  I don’t want to be making decisions out of fear; rather I prefer to make decisions out of love.  Love for others, love of what I am doing, love for myself.  I tend to approach most of my relationships and my work in an open manner; not necessarily revealing all and not having any boundaries, but to allow things to be shared without disguise, or if I don’t feel comfortable revealing; to share that frankly.

As I write this entry tonight, I think I have resolved the anonymity question, for now.  I think I am uncomfortable with being easily judged for my experiences right now, a level of vulnerability that I feel with still actively receiving cancer treatments. However I do think when it feels right I will be writing under my given name.

On Loss

Earlier this week, Canadian politician, Jack Layton died of cancer. Jack, as he is affectionately referred to, made so many contributions to my city as he initially was a city councillor here; he went on to become the leader of the official opposition. As a social worker I have seen and supported many of the changes and causes that Jack advocated for in public policy that created change for communities.  It is a great loss for our communities and country. 

The loss of Jack has touched many deeply, including myself.  I think I feel his passing intensely as in some ways the loss of Jack reminds me of the loss of Al, my husband; the loss of someone who always had something positive to contribute and to share with those around him. As I read my words, I think of the importance of reframing.  I have been focused on loss. What is more important is how much I have gained by these amazing people who have touched my life.  It is a reminder of how to live life fully. It is a reminder that death does not mean the end but the beginning of a legacy that started with living. And through remembering and story-telling, the departed continues to live.

Jack had written a letter to Canadians just hours before he died.  I’d like to share the last paragraph which I believe are words to live by, and describe how I try to live.

 “My friends, love is better than anger.  Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.”

Wigged Out

Today is Easter Sunday, and my hair is falling out.  There was almost a full handful on my pillow when I woke up this morning.  I am afraid to brush it or wash it as I am sure even more will come out beyond the hairs that seem to be following me everywhere.  It’s kinda like the Charlie Brown Christmas tree, every time it is moved there is a little tinkling sound and a few needles fall out; only I have hair falling out.

It’s not like I haven’t been preparing. Since my meeting with my oncologist who told me that within 2-3 weeks of treatment my hair will fall out, I have gone to a few wig places and tried on wigs.  I know which one I will purchase.  I wanted to not act right away, you never know, perhaps I was going to be one of the 10 - 2% who don’t lose their hair on these drugs.

I had a feeling this was going to start on the long weekend.  On Friday it was clear to me after my shower that my hair was falling out.  Saturday I called the wig place to find they are closed until Tuesday.  I have my blood work and doctor’s appointment on Tuesday morning, so I am hoping they can fit me in Tuesday afternoon.  What if they can’t? Will I lose all my hair without having a wig?  I’m not prepared to do that.  I have places I go that where they have no idea that I am doing cancer treatments and I want to keep it that way. I do think I am entitled to creating a few cancer free zones.

The other piece of this is about self-image. The whole treatment can wreck havoc with one’s self-image.  I think I have generally had a pretty secure sense of self-image and have been fairly comfortable with my body, especially in my adult years.  But the surgery scars, that are tell tales of what I am going through.  If I find myself dating again, I’m wondering about the whole developing intimacy with these new pieces of myself; the kind of heavy conversation that could ensue; although it could be a way of gaining deeper connection and a way of screening out anyone that does not hold a deep philosophical reverence for what I have been through. But that is future and hard to really hold onto when presently I am losing my hair at a furious rate.

Then there’s the fact that a number of the drugs that I will (or am) taking will put my body into menopause, even though I’m a little early for such happenings.  This I struggle with because likely it means I will not have any more children besides my one.  I haven’t seen myself really wanting to develop a new relationship or been feeling I need to have a second child, but that mere option needs to be mourned and released.

What am I doing with all these feelings and thoughts?  Well I’ve been walking it out, had a good cry and some time to meditate.  I have also voiced my sadness of the changes to friends and worked with them on reframing this. Going on the theme of rebirth (emerging from the chrysalis), often people will have their head shaved as part of ritual to initiate change in their life. My hair loss can be a symbol of the internal rebirth I am working on through my treatments.  I reminded myself today in conversation with a good friend that spring is about rebirth, as is the Christian Easter.  Birth is not an easy process for the mother or the baby.  It requires a lot so hard work, nurturance and effort.  This is a reminder that this rebirth is not going to be easy.  The treatments are harsh and they will challenge me.  When I remind myself of this, I find that I am OK with this process again. I guess this part of my growing pains.