breaking point

I’m usually emotionally solid as a rock. Sometimes it has come across as being cold and emotionless, but I’ve always felt I have an over-abundance of emotion that I keep in a complimentary mix. In the vast universes in my mind, I can feel the deepest sadness, but I have an arsenal of happy thoughts, memories and hope to keep me afloat. As if the sadness holds everything but my nose underwater, and just the fact that I still have that bit of air keeps me from depression. A delicate balance. For me it’s managed through flexible perspectives, meaning I don’t stick to one frame of mind, I search for alternate views that people in different circumstances would feel. I cry often when I’m happy, but rarely when I’m sad.

I have been crying nearly non-stop for the last 24 hours. I feel despair, I feel pity, and I can’t find my perspective. I know it’s there, I can find the words: I’m not blind, I can still walk and talk and use my hands. It could be so much worse. These things reach only as far as my logical mind, but they can’t reign the emotions back to stability. A colostomy bag on my stomach means horrible smells. It means at some point it will break or leak or fall off and I’ll get shit all over me. It means constantly irritated skin from the glues. Sometimes the hole in my gut will make weird sounds. If there was an end in site I wouldn’t be so devastated, but this is the rest of my life and I can’t seem to cry enough.

I’m in mourning for something I haven’t even lost yet.

I called my oncologist’s office today because I don’t understand why they aren’t testing me for cancer before the surgery. From what I understand, there is no test that detects the earliest stages of cancer, they only have a blood test that detects cancer if it’s developed considerably. So my cancer could be gone or it could have just shrunk up to a point where it’s undetectable only to grow back again.  There’s no way to know. Removing the area is the safest thing, they keep telling me.

I searched for info on rectal transplants. (Yes, you can laugh. I did.) It’s not a thing, no one does it. I searched for clinical trials and alternate surgeries, too. There’s a clinical trial surgery called APPEAR that is meant to spare the rectum, but it’s still in the early stages and reported morbidity and only success in about half the cases so far (if I was reading the reports right). There have been a few people my age that had surgeons that wanted to try to spare them the bag because of their age. These people reported being treated for depression because they had no enjoyment in life. They have random stomach pains and they have bowel movements between 30 and 50 times a day. They pooped themselves often enough that they decide to just sit on the toilet most of the day to avoid the hassle and embarrassment. Leaving the house is not an option for them.

At this point, I’m gaining some comfort from the fact that I’ve educated myself and exhausted all my options (Stage: Denial). I’m still going to speak directly to my oncologist to make sure I completely understand the risks if I were to opt out of surgery. I need to hear it’s dangerous so I know I’m making the right decision gluing a poo holder to my stomach. Usually when I’m told something has to be a certain way, I fight it kicking and screaming just for the sake of challenging whether or not it’s true. All to often the status quo is just what people settled on because it felt safe.  But usually the things I fight don’t involve a risk of death. Cancer is such a bitch.


About Kamina Kapow

I have dimples and friends

5 responses to “breaking point”

  1. becomingamazon says :

    Sweet girl….I don’t know you but I have walked in your shoes. Mourning is hard. Grief can be overwhelming. Both have their own time periods, both come and go at will. Neither can be rushed, but both can be stuffed to your detriment. Allow yourself the time, be sweet to the child in you that is suffering so greatly. It is yucky, it is not dignified, it is horrible to be invaded again and again. It is traumatizing each time you have to deal with each new component. It will get better….your sense of humor will return and no one will think poorly of you for the days of grief. Don’t dwell on what you don’t know…there is only what is in front of you — YOUR story, not anyone else’s. Even doctors don’t know. BE NOW. Even when now is yucky — be here, be in it, know it. Dont’ tell yourself how lucky you are — you already know that….right now you are learning how VALUABLE you are to you….that is the lesson of cancer. Know there is a bottom, you will not stay there and there are all sorts of us who will remind you again and again and again of your wonderful quirky self.

    I am sending prayers and love and peace to you. I wish I could meet you – so you could see me, a single woman in pain all the time with one boob (which is not exactly a turn on). I grieve still, I cried this morning. And I just let the feeling BE. In honor myself with my own tears, and then I let them go….like dandelion seeds in the wind…away they go. There will always be more, but they will always go. And so it is…..

  2. adayinthelifeofamiddleagewoman says :

    I’ll just cry with you both.
    Love and light. That’s all I can offer. The rest is so alien. But, I will say that you, Kamina, will be beautiful and perfect to those who love you no matter what’s attached to your body.
    And you, ‘becomingamazon’…well… are your words; and your words are so powerful and strong and feeling and empathetic and sympathetic and simply exquisite.

    Love and light you two. Love and light.

  3. Jenn's Mom says :

    I like that you’re looking for 2nd, 3rd whatever, opinions about whether the cancer is still there. I’d wonder, too, if they couldn’t have a close look without cutting everything out first, let you wake up to discuss the situation and make a decision based on actual findings rather that medical expectations. I think I would want the same thing, and be in the same state of flux as you are. I do know that to live with a stoma and a belly bag is not the worst possible thing, but to live wondering if it was really necessary would be a bit hard to take. I told you that my ex-husband had all that; his problem was chronic colitis which resulted in an iliostomy. He had all those things, the bag, the sounds, an occasional infrequent equipment failure, but we worked it all out and he managed an active life in every way. Later in our marriage he ran off with my best friend and then married someone else, so it didn’t hamper his sex life any either. Bastard. Anyway, along the way with him, I met several women who had the same surgery, and while not their first choice (duh!), they thrived. Focus on thriving. And this crying thing and the grief, just let it wash over you, but be sure you send it back out again…like the surf. And maybe you could design some freaky bag covers.

  4. Stefanie says :

    I understand that they have to test the tissue itself, but couldn’t they go in and biopsy a bunch if different areas, test them and THEN decide if you need surgery? It seems unusual that there is absolutely no way to tell the cancer is gone with taking out a big old chunk of rectum first. I mean, maybe they don’t want to do one surgery and then have to wait until you’re healed before they can turn around and do another one if it turns out you need it, but considering your age and the unavoidable colostomy bag, I would think that would an acceptable delay.

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