On appearances

Today I was reading a blog entry, ‘Looking Good’ by Sam Albert (http://ultra-sounds.org/author/skipthewheatgrass/). She writes about how people are always telling her how good she looks, as if there is an expectation that she may look worse, being ill.

This made me reflect on a recent interaction I had with a colleague whom I meet occasionally.   This time, she said, you know you are really looking good, if someone came to our table and we said one of us had cancer they wouldn’t know which one.  I questioned this and she added that I don’t have the dark circles under my eyes or the hollow look around my eyes any more.  I would say, I actually do have dark circles under my eyes still, but not as defined as before. Furthermore, this colleague on previous occasions has told me I look great, which I’m pretty sure was not the case; or perhaps the expectation, as Sam Albert surmised, is that someone whom is “battling" cancer would look worse.

This makes me think that either my supports are either trying to bring me up and make me feel better by telling a “little white lie” or they have really grave perceptions and are amazed by how well I fared through treatment.  Really, what does a cancer patient look like?  Certainly I see at the hospital and other places really ill and frail looking patients who have likely been battling for awhile and/or the cancer has progressed far enough to seriously impinge on bodily functions.  I saw this with my husband.  But even in his case, he really didn’t look gravely ill until the last 4-5 months of his life.  Short of the hair loss from certain chemotherapies and the weight loss side effects (both which are not givens in cancer treatments but common to cancer treatments), often cancer is an unseen illness for many patients, much like mental illness or chronic fatigue syndrome.  Many patients “pass” as healthy without any health concerns if one looks at outer appearances.  In the chemotherapy waiting area, it is interesting to look at the people and sometime the only thing giving away the patient is the hospital wristband.

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.

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.