can’t sleep (by Judy)

I can’t sleep tonight. Thoughts swirl around my mind — the cancer, the hope, the fear, our lives. Our lives are not composed solely of cancer, but cancer can’t seem to NOT permeate nearly every aspect of our existence. I am a person. I used to be “just” a mom, wife, librarian — someone who could exist amongst the world of the healthy people, living with certain words describing me and not being Someone Who Has Cancer . . . Stage IV Cancer, at that.

*sigh* I hate cancer. I hate the way it robs of of things in our lives even when we’re living and I hate how it robs people of their very lives, the way it will most likely rob me of my life before I’m ready to leave this earth.

So I can’t sleep. Despite my best efforts: despite Angry Birds and Facebook and turning the light off to go to sleep, and trying to relax, my mind won’t stop tonight. It’s full of thoughts of friends who are sick and friends who have died and my good friend’s mother who died and my father who died many years ago and so many people who have died of this terrible disease, cancer, in its many many forms.

I think and I sigh. I know both oncologists that I’ve seen have told me that many woman live many years with the kind of cancer that I have, I know this . . . . but I didn’t have the courage either time to ask what “many years” meant because I have a suspicion that “many years” to me may be a totally different thing to the oncologists. So I live in some kind of suspension, thinking, hoping I can beat the odds AGAIN and live a long time. Yet at the same time I project into the future and always think of how old Energy Boy will be when it’s time to quit the treatments, when it’s time to call in hospice, when it’s time.

When it’s time.

I don’t know if it will ever be enough time, not with Absent Minded Professor and especially not with EB, for raising a child is really a life-long job that moms never quit doing. That they never want to quit doing. It’s the best thing I’ve done, being a mother. He’s the best part of my life, he and AMP. I don’t want to quit at some time just because cancer has worn down my body and made it time to quit.
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I think people expect certain things of me. I think people expect me to be “up” because most of the time the world sees my smile and not my tears. I think people want me to be a fighter when sometimes I just wish I could call on someone else to fight for me, just to give me some rest. I think people want me to be able to do all the things I used to do when the reality is that my energy level and stamina are so much worse than they were Before Cancer. I may now have hair and I may “look good,” but the fact is that I still have cancer and even if I don’t go into the Chemo Room for infusions, I’m still on chemotherapy; it just comes in pill form.

I think people think I’m brave when I feel anything but. I think people people think it’s wonderful that I’m working full-time when all I can think about work is how much it saps my energy and how I have nothing left for my home life . . . and how sad that makes me. And I think there are some people (not many, but some) who wish I would just stop talking, stop writing, stop sharing my life so openly.

But that’s not me.

This — the sharing, the late-night posting, the telling of fears and vulnerabilities — that’s me, and I’m not ashamed that’s me; in fact, I’m proud that’s me. I’m proud that I can work things out online, that I can think out loud, live out loud, and put it down on the computer screen while I’m thinking things, that I can figure things out as I’m typing the very words that you now see.

That’s me.

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The house would be quiet if it weren’t for AMP snoring like a freight train. The air just went on again so I hear the whir of the air coming through the vents, keeping us cool when it’s hot outside. I wish I could take a short walk or wake someone up to get together and chat over coffee (decafe for me, at this hour) or tea and just talk about life and be witnesses to each others’ lives. I write this down so any readers can witness my life; the thing is, I don’t know about most of the witnesses. I just keep writing and assuming people are, if not drawn in, at least interested in the mundane and not-so-mundane parts of my life.

I am tired. I am tired most of the time, but if I stay up late like this, of course I’ll be extra-tired the next day. However, when the old beast Insomnia comes and keeps me up, it makes this sleep stuff difficult.

I am living. I am writing. I am sharing. I am here.

I am here.

I am still here.

And maybe that’s what matters most.

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Cross-posted to Just Enjoy Him.

A Cancer Survivor’s ABC’s — according to Judy

Help me finish my ABC’s. I first just had one word for each letter, but that didn’t seem like enough so I’m trying to include three words for each letter. Some, alas, only have one or two. Those sad little letters need more words.
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A is for Arthritis, Arimidex, and _________
B is for Bills, Breasts, and Biopsies
C is for Chemotherapy, Cancer, and Care
D is for Doctors, Denial, and _________
E is for Energy, Emotions, and _________
F is for Faith, Fear, and Family
G is for Gratitude, _________, and _________
H is for Hope, Hospitals, and Health
I is for Inflammatory (Breast Cancer), Infections, and Injections
J is for Joy, Journals, and Judy
K is for Kids, _________, and _________
L is for Lymphedema, Leukemia, and Legacy
M is for Mastectomy, Mothers, and Menopause
N is for Nausea, Neuropathy, and Neutropenia
O is for Office (Doctor’s), Oopherectomy, and Ovarian
P is for Port, Pain, and Patient
Q is for Quiet, _________, and _________
R is for Radiation, Rest, and Recovery
S is for Surgery, Support, and Survival
T is for Tests, Trials, and _________
U is for Uncertainty, Understanding, and _________
V is for Vitamins, _________, and _________
W is for Warrior, Weary, and _________
X is for Xeloda, _________, and _________
Y is for You, _________, and _________
Z is for Zofran, Zest, and _________

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Cross-posted to Just Enjoy Him.

love and death and samosas (by Judy)

Yesterday I went to my friend N’s mother’s calling hours. Her mom, Mrs. A., had died on Friday morning while in hospice care, having had ovarian cancer for five years or so.

I loved Mrs. A., just like I loved Mr. A. who passed before her. I wrote about his death, but I’m not sure where it is and so I won’t link to it. It’s the end of an era in a way, with both of N’s parents being gone which is incredibly sad in itself. Unless I go before my mom, her death will be the end of an era, with my brother, sisters, and me going from being someone’s child to being nobody’s child. I can’t imagine. It must be such a strange feeling, your strongest links to the past being gone like that.

I’ve known Mrs. A. for as long as I’ve known N., since I was nine years old. I can still remember sitting in their kitchen, Mrs. A. giving me wonderful East Indian foods to eat, samosas being one of my favorites and those sticky sweet twisted desserts that I can never remember the name of being another favorite.

Selfishly, I suppose, I loved seeing N and her wonderful husband, J, yesterday, but of course I wish it had been under happier circumstances. Being the thoughtful people they are, they both asked me how I’M doing, even in the midst of their grief.

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I mentioned in yesterday’s post how well I’m doing on these new chemo drugs, and I am to a certain extent, but I do tend to downplay the fatigue which is a huge part of it. I’m tired most of the time, and work wears me out even though it probably wouldn’t be that taxing to a healthy individual. Almost like clockwork, around 3:00, I really start to crash which makes homelife difficult. I often end up just going home and crawling into bed for the rest of the evening. I hate not being there fully for my son and husband. It’s hard.

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Anyways, yesterday’s calling hours also selfishly made me wonder about my own mother and me. Will I die before she does (she’s 83 now; 84 at the end of Aug.)? Or will the treatment(s) work and help me live to raise my own son which is my biggest wish, my largest prayer. Just give me enough time with Energy Boy, God . . . please.

It’s the unspoken selfish thing that goes through my mind, and perhaps the minds of others with cancer when someone with cancer dies. It goes through my mind especially when it’s someone with breast cancer: that could have been me, that could be me. It’s been — so far — the unspoken part that I think right after I’m struck by how sad that person’s death is, what a loss to the world that they’ve died. Then I go to the unspoken place, the place that maybe others think about but don’t talk about, the place that makes me sound selfish to myself, the “that could have been/could be me” place.

I hate that place. I hate it not just because it just makes me sound so very selfish, but I hate it because . . . I also don’t want to go there. But I do. I can’t help but go there with my illness.

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I’m sorry, Mrs. A. — and all those others who have gone before me. I’m sorry for being so selfish when I should be thinking about and grieving your death. And I DO think about and grieve your death, but there’s a tiny part of me that does the “what if?” Then I typically feel guilty about thinking that, and go back to grieving whoever was lost to us.

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Love and death. It’s so hard to lose people that sometimes I wonder if it would be easier to love less, but the answer to that is always “No,” for the people I’ve lost have enriched my life so very much that I’m glad I knew them. I’m glad I knew them, loved them, and even grieve them, for it’s in grieving that we know that we are capable of such love. The heart has the capacity for more love than we can even imagine and I’d hate to miss out on any of it just out of fear. I feel that way about even the closest people that I’ve lost; probably feel that way even more about those closest to me that I’ve lost. No matter how long their time here, I am glad for having known them, for having loved and been loved by them, for having them enrich my life.

I just hope that when my time does come (and I hope that’s a long time from now) that I can leave such a legacy as well. A legacy of love, given and received. I can think of no better legacy.

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Good-bye, Mrs. A. I trust and hope you are truly resting in peace right now. You enriched my life, and I’m glad I knew you. Thanks for the samosas.

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Cross-posted to Just Enjoy Him.

“well, you *look* great,” (by Judy)

people often tell me. “If I didn’t know you had cancer, I wouldn’t think you were sick at all,” one person said.

One of the great ironies of my cancer is that I look fine, healthy in fact, yet I have this insidious breast cancer that metastasized to my liver. In fact, the sicker I’ve gotten, the healthier I’ve looked because the one main physical manifestation of cancer — hair loss — isn’t there any more. My hair started growing back while I was on the second chemo, navelbine and herceptin, and has continued to grow back while I’m on this new regimen, tykerb and xeloda.

Also, besides the fatigue, which just seems to be a constant with all cancer treatment, I’m doing OK. So far, I don’t have nausea, diarrhea, or rashes on my hands and feet, which are possible side effects listed for this chemo.

I just also have no idea if it’s working.

There are those who believe that if I feel good and am “doing so well” on this chemo, it must be a good thing, I must be responding to the chemo. However, since I felt good (except for the fatigue) on the navelbine/herceptin mix, I know that’s not necessarily true.

In fact, I don’t seem to know what’s true anymore, as far as chemo treatment goes. I can’t predict this one. In a big way, I’m afraid to predict this one because the last two didn’t work and those failures were devastating. Not only did they not work, the cancer got worse throughout each treatment. Not fun, not fun at all.

I’m just trying my best out here, wanting to be and remain the best mother I can be to Energy Boy, wanting to stick around for him and for me so I can see him growing up.

I look fine. I feel pretty good (aside from fatigue and neuropathy in my hands). But the truth is that I’m sick.

I hate being sick. I hate this uncertainty. I need to get back to a place where I put my faith and trust into God, no matter what the outcome. I had that once; I need to get it back.

I just don’t know how.
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Cross-posted to Just Enjoy Him.

please honour my friend by having some fun (by Laurie)

My friend Rebecca died this week. She was all of 37 years old (if I’ve done the math right) and she had metastatic breast cancer. She was also one of the funniest people in my online community. She was also generous, straigtforward and honest. My heart goes out to her friends and family – the people she loved, wrote about and who knew her best.

Rebecca left strict instructions that we were to shed no tears after her passing (I’m afraid I’ve let her down on that front but I’ve been doing my best) and that, instead of a funeral she wanted a celebration of her life. I’d love to join the party and to hear the stories that those closest to her would be bound to share. Because Rebecca took her fun seriously.

I won’t be able to attend the celebration (Rebecca lived in Cape Cod) but I would like to do something. And I need your help.

1. In the next week or so, please go out and do something fun. Do anything at all, as long as it makes you happy. If you need inspiration, Rebecca loved dogs (especially her pit bull, Diezel), cooking, eating out (her restaurant reviews were among my favourite blog posts), her scooter, her little car, road trips, NASCAR, kick boxing, books, funny movies and music. If none of these things appeal to you, please go out and do your own thing. If you like, bring someone with you to join in the fun.

2. Let me know. You can leave me a comment on this blog, at Not Just About Cancer or send me an email (laurie dot kingston at gmail dot com) or message me on Twitter (I’m @lauriek). Just a few words to let me know what fun thing you did in Rebecca’s memory. I’ll compile a list and make sure that it gets to her family.

That’s it. It already makes me feel happier, thinking that there will be a little more joy in the world this week. I think Rebecca would approve.