Sunday, November 21, 2010

The Mirror Cracked

I have been lamenting the loss of my hair all week due to going through chemotherapy. I did a small "class" this week on journaling at the local cancer care center in town and it's really got me thinking about a number of things.

For a long time I think I have been obsessed with my appearance. This is sort of funny, because I've let myself gain a LOT of weight over the years due to what can only be regarded as rampant hedonism - so much so that the thought of going on a sufficient enough diet to lose it is a daunting task. Still, I have always been rather particular about how I look. Rarely will I step out of the house (for instance) without makeup on my face, or my hair fixed nicely. With my hair losses mounting by the day, looking in the mirror is becoming increasingly difficult. All I see is the baldness coming through...and yet...

The loss of hair is in a small measure a little liberating. I can't really fuss over what isn't there, and looking in the mirror is starting to become less about real appearance than perhaps mental and physical health. Perhaps this is way overdue for me as well. I've needed to pay better attention to my overall health for some years. This lack of attention has lead to physical (medical) problems as well as some emotional ones over the weight gains. I think it's changed the nature of some of my relationships. And who knows, perhaps it lead to the lymphoma I am now fighting. Losing hair has allowed me to look closer at my identity and less at the outer shell.

This week I saw an Oprah show that talked about a man called "John of God". He is a Brazillian healer. A man who went to see him as a journalist came back from his visit profoundly changed and he was interviewed by Oprah on the show. He made one comment that has resonated with me this week. Something I've know and believed all my life as a Catholic, but not paid much attention to. He said our bodies are not who we are but are just the shell/casing of our beings. He said alot of other things too - about how we are all connected and that our minds are so much more than we intellectually "know." I really got that.

So this week when the woman presenting the journaling class asked about who my authentic selves were I had to step out of my "body" and think hard about it. I immediately had an image of the multiple personalities person "Sybil" from the book and movie of the same name. So I got to thinking about my selves/what comprises all the "hats" that I wear. And not just the labels like "wife", "mom", "friend", "daughter". Those are roles. I think the authentic self comprises personality traits and the longings/strengths/weaknesses of our souls. I had a hard time defining those at first because just asking the question makes me have to think about myself as a soul and not as the shell I see in the mirror each day. Something I am really unaccustomed to doing.

For the most part I like my soul and I'm comfortable IN my skin/shell. Not so comfortable WITH my shell. There is a difference. And it helps me put into perspective the hair loss thing too, which I have been so focused on. What I am noticing this week is that even without hair, I am still the person underneath. I still am a peacemaker, a creative entitity, a nurturer. I still like to read the same kinds of things. I still like to do the same kinds of things I always did. I have the same thoughts and feelings. My hair, it turns out, has little to do with me. If I focus on that, I think I'll be able to get through the loss fairly easily. Besides, it grows back, right?

The moderator of the journaling class steered my thinking this week. She had me veer away from the familial titles and think about my traits. So here it is....I acknowledge that I am sometimes naive. I have a gift for seeing situations for what they are and cutting to the chase to get solutions, particularly for others. (Not always as good with my own interpersonal relationships. My insecurities get in the way.) I can be morose, but it usually doesn't last a long time as my nature is to be optimistic. I cannot say I really "hate" anyone or anything with particular vehemence. (Brussels Sprouts?) I can be slothful/lazy for only a short period of time before guilt sets in over not getting something done. I seek others' approval, usually by doing things for them so they can see my "value." I love family unreservedly but am really guarded when it comes to romance for fear of being hurt. I have been hurt romantically many times, one of which was profoundly. It's hard for me to trust, so I end up taking on more than I should instead of letting go. I am childlike in my love for holidays, most things Disney, great books like the Harry Potter series, and getting ANYTHING new. My authentic self is giving as a rule, sporadically organized, a pack-rat, and a dreamer. I am a Pisces for sure because I could stare at a lake or ocean all day. I love the water, but am afraid to drown/swim - though I know how. I am fearful of a LOT of things, sometimes to the point of inaction. I encourage others to advocate for themselves but rarely do it on my own behalf. I can be critical of others and acknowledge that I have some biases learned from an early age. I wish for greatness but have not achieved it I don't think. I know I am smart and have a good sense of humor - two things I am also rather proud of.

I can go on and on when I think about what I am, how I react to things, how I was brought up, what I think about myself and the world around me and what comprises my dreams. The truth is we are all complex beings. The mind is vast and not understood by science all that well. I do think I will live forever in some capacity because I have often felt the presence of others around me whose "shells" are in the ground. I believe in God - a creative force/energy. I am fortunate to have many people that I care about and that care for me. THIS is what makes me, ME. Not the shell that I have put too much emphasis on for too long.

Funny how a "little" think like losing your hair can change a point of view so dramatically. There is no choice but to see beyond the hair once it's gone. To look in the mirror and see the soul residing there. I have to think more about that when I meet others, too. So much attention in our society is placed on the shell and not NEARLY enough is placed on our spirits. Chemo may be taking away my hair, but it cannot strip my spirit away - my authentic self.

Tuesday, November 16, 2010

Chemo Brain

It's been a crazy, frustrating, depressing ride the last 16 days. I began what will be three "rounds" of chemotherapy on November 2nd, Election Day. I feel as if the time that has passed has been as in a fog of some kind - or like time just kind of stood still. In this time I have discovered some of my frailties as well as strengths, but the process is not easy. How could it be, really?

I am "battling" stage one Diffuse Large B-Cell Lymphoma, found during a routine (and first time) colonoscopy in late August of this year. To say the diagnosis threw me for a loop would be a gross exageration. My mind has been in somewhat of a tailspin since early September. Some would say I am lucky having found it so early and to have not discovered it anywhere else, despite copious testing. Lucky seems to me to be the wrong word altogether. Relieved is a better word. Good that it was caught so early and that I have doctors that are on top of things. But lucky? Not so much.

The plethora of side effects that comes along with chemo is scary, annoying and REALLY difficult to take. It's not like taking antibiotics when you have a sinus infection. To sit in a chair for six hours while toxic chemicals are dripping steadily into your veins is downright unnerving. Thank GOODNESS that the first one they give you pretty much puts you right to sleep for a couple of hours. It doesn't really hurt while the drugs are going in. It's a day or so after that all hell breaks loose.

I went to "patient education", taking my daughter along with so there would be another pair of ears to hear all about side effects and what was going to take place. Too bad I can't remember nearly a single thing said that day. Too nervous I suppose. My daughter remembers everything he said to me and each new side effect that takes a grip on me is met with a shrug and a "oh yeah, they told you about THAT." Like hell. I had no clue the extent and breadth of the upper and lower G.I. tract "issues" I'd have. Now I'm praying this stuff isn't doing permanent damage. In order of severity, here's what hit me: Painful constipation, Heartburn to the point of esophageal spasms/gastritis, headache, fatigue, mouth dryness/soreness, body pains - particularly my ribs and back, nausea, eye dryness/blurriness, forgetfulness, and finally - the capper - hair loss. It would have been nice to have medications to combat some of these before they hit. The nurse taking care of me says that next round at least they will know what to expect. I'll say.

All this is hitting at the holidays. Not that it would be any better another time of year, but it's really hard to think that I will not be able to taste (or have any taste for) Thanksgiving dinner. I may not have a sense of taste for Christmas either. And forget about all the stuff that needs to be done this time of year. I'm the one who does EVERYTHING for this family for the holidays. Let's see who steps up to the plate this year. I'm not going to push myself 10 days post chemo to host the entire family. This year I get to be the one who is waited on. Let's just see if that's what happens. I can't even figure out how I will organize all the stuff to get done when my head is in this fog, particularly the week or so following a round.

I'm blaming any balls I may drop along the way on chemo brain. What the heck. All the bloggers talk about the effect of chemo on cognitive function. May as well use that as a good excuse. Not that chemo itself isn't excuse enough already. It's just weird being the one sitting back and letting others do the work. But I am entitiled, I think, to a rest. And if no one else steps up to take over what needs to be done I'm going to become the worlds most annoying delegator.

That is if I can remember what needs to be delegated.

Wednesday, November 10, 2010


I have started chemotherapy. So far one round of R-Chop down, two to go. I figured that I'd feel pretty much ok after a few days, being that my body was "healthy" going into that first session. It's demoralizing to now understand how wrong I was. I keep praying that the usual side effects won't hit me, yet one by one they seem to be coming.

I'm not coping well either. Oh I tell people that I'm lucky this was found at stage one and that things are "as good as can be expected," but how in the world could someone know what this feels like unless they'd gone through it themself? A friend (Julie) has been most helpful, sharing her personal journey and warning me of some early symptoms of side effects. If only the doctors could have warned me in advance of the heartburn and GI troubles.

Today I have had chest pains. I don't know if this is related to esophageal spasms such as I experienced over the weekend, or something worse. Tomorrow morning is my visit with the oncologist's office for a blood draw. I can't wait to tell them yet feel wimpy in bringing up every little pain or ill that I feel. But I'm entitled, right? I'm having to go through massive poisoning, essentially. Why shouldn't I complain if I'm not comfortable.

Many nurses around the hospital have said my particular Oncologist is "into comfort" for his patients. I'm not sure I see evidence of this and it has me more than a little ticked off, really. I don't even officially see him until the morning of the next round. That seems rather callous of him. I get the blood drawn and he looks at the results, but I have to wait 10 more days to know where I stand? This is not right.

I learned several years ago when my husband was gravely ill that the best advocate to the medical constituency that one has is one's self. It's just a shame that I haven't the energy to fight or to demand. I have to rely on others to do that for me as my husband relied on me to advocate for him when he was unconscious. Problem here is that I go to the appointments alone. So much for backup.

I'm terribly resentful of this whole process and what is being done to me, regardless of the fact that it's saving my life, potentially. I want to be wholesale taken care of through this. I don't want to still be pickup up my family's dishes and doing their laundry. That seems unfair to me. And as much as they say they are stepping up I see little evidence of it and I am getting madder by the day.

Chemo stinks. Being sick stinks. Relying on others stinks. Every single thing about this stinks except that it was caught early and is curable because of it. I guess I have to hold on to that.