Tuesday, November 8, 2011

A Thanks to All Caregivers

I am currently in the waiting room of a dentist's office. Keith is getting a root canal (one he's been putting off since the summer). He is in with the dentist while I write this entry. He was pretty scared (he's a root canal first timer and doesn't know what to expect) and I feel so helpless out here just waiting. I started to wonder, if I feel this helpless during a root canal, how helpless must he have felt for the past 8 months?

I talk a lot about there being missing resources for young women with breast cancer; we seem to be forgotten about when it comes to pictures on pamphlets (usually pictures of 50-60 year old women), guidelines for women and breast health (usually they start at 40), and you rarely see mention of fertility or dealing with menopause in your twenties or thirties (thank you chemo). These are all issues that I think need attention (which is why I write about them) but what also needs attention, rather recognition, is caregivers. Excuse the term 'caregivers' as I know some people are offended by the term but for this purpose it is all encompassing.

My primary caregiver was Keith. I have said this before but, I will never be able to properly express my gratitude (which isn't even close to a strong enough word for how I feel) for what he has done for me. Losing a breats at 26 is awful but knowing that you have a man who loved you when you had 2 breasts and is going to love you with one or none is, if nothing else, a relief and a comfort. He has sacrificed his life (social, financial, work, etc.) for me since March. I could have said "I want to fly to the moon because I think it would help relieve some of this pain" and he would have been on the phone with NASA to inquire how to make it possible. I know he felt so helpless from the day of diagnosis but he has done more for me than I ever expected someone could do.

Six days after I was diagnosed, I came home to a gift on our kitchen table. He explained in the card that with everyone around me who loves me, I am not going through this alone. He said that he would always love me and always be there for me. I opened the gift bag and inside was a journal. He said "I want you to write everything that you can't tell me, in this journal and I will never read it." It was exactly what I needed. I have EVERY day from the day of diagnosis accounted for in that journal. I still write in it to this day.

He has listened to me laugh, cry, talk about recurrence, fertility, and the word 'cancer' has been said more in the past 8 months than it should be in a lifetime. Not once has he said "I don't want to do this anymore" or "I need a break". I'm sure he has felt that way once or twice but not once has he conveyed that to me.

Although there is very little out there for women my age (or at my stage of life) with breast cancer, there is even less for caregivers (especially in Keith's situation). I talk a lot about having a great support system but because I wasn't going through it alone, my supporters need support too. When I think about hugging my parents and my mother-in-law goodbye in the registration area of the hospital as Keith and I left to register for my surgery, it brings tears to my eyes. I wish I could go back in time, take 'that' Katie aside and hug her, tell her it was going to be ok, tell her that she will be able to live without a breast, that there are other women out there just like me, and tell her that no one is disputing that cancer is a jerk but in order to beat it, my breast would need to be removed. Once 'that Katie' was okay, I would go over and reassure my parents of the exact same thing.

While I was in surgery, my family was waiting for me, praying for me, and trying to protect me while I was in the OR. I can imagine that they were petrified. I was getting cancer cut out of my body and there was nothing any of us could do about it but wait, and hope all of it was caught. Then, when I was going through chemo, all anyone could do was watch. They could try to make me more comfortable but they couldn't stop the pain, the puking, the mean thoughts in my head or how chemo was affecting my thinking.

Those around me, those who supported me, didn't express their pain, frustration, sadness, etc. that they were feeling because they thought I had enough on my plate. So, who did they tell? Who did they have to turn to? Who would understand how they were feeling? They could lean on each other but sometimes it's nice to talk to someone who is a third party, someone who doesn't need the same support you do, someone to validate your feelings, someone who can be strong for you without you having to reciprocate. I sometimes wonder what I would have done without Keith, my parents, and my in-laws. I think I would still be in my bed, under the sheets, crying. I couldn't have faced those needles alone, I couldn't have survived chemo without Keith, and lets not forget all that he did for me after surgery (emptying my drain, cleaning me, feeding me, helping me clean my incisions, walking me to the bathroom, changing my shirt because I couldn't accept the loss of my breast).

This entry is devoted to caregivers. I was the one who got the cards when I was diagnosed, I was the one who was sent info about support groups, and about peer counselling but what about the people in my life who were experiencing this diagnosis along with me? No one wanted to lean on me because I wasn't strong enough to handle it but they all had their own individual needs to deal with and no where to deal with them. There needs to be greater resources for caregivers because their needs are separate and unique in comparison to the patient's needs. How many 34 year old men know as much about breast cancer as Keith? Not that many but those who do would surely benefit from each other's support.

Here's to my family, my in-laws and to Keith. Thank you for being strong when I was weak, for saying the right things, for making a joke after you've said the wrong things, and for loving me when I wasn't easy to love. Thanks for believing that I could be strong when I knew I couldn't and thanks for continuing to talk about the 'after-cancer' days and reminding me that I am so much more than my cancer. I love you.

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