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To Be Clear

I know my last few posts may have been a bit confusing. First, I posted that my tumor (which could be construed as my cancer) was gone. Then, I didn't post at all about my cancer, but about the neighborhood. So, I suppose it could be surmised that things are all better or getting better.

It is only fair to be clear. Last Tuesday, the Hospice nurse came and we talked for over an hour, maybe two. There were a lot of questions on my part and many answers that I knew, but didn't really want to hear.

Let me try to lay things out a little. Maybe it will help clarify my own muddled thinking. The Hospice nurse's name is Judy. We chatted for a long time. I felt like I shouldn't even be on Hospice services. I mean, how crazy is it that I have to rush home from work to get there for the Hospice nurse? She agreed to put me on services for 90 days, and then re-evaluate. She is going to come and see me every two weeks instead of every week, for now.

We discussed whether or not I should let Pelley go. In the discussion it became clear to me that his goals and mine are different. I have said that before, but I guess I have finally reconciled myself to it. He wants to treat and cure my cancer, while saying that there is nothing more he can do. Judy joked that there are docs who would go to the funeral home and give chemo if they could get away with it. I don't want that, of course. But truth be told, I don't want any more chemo since it really won't do anything for the cancer. I've said that before, and I mean it, but I had to release hope, for the last time. Hope for a cure, a reprive. I still hope to live out the rest of my life and to do it well, but I realize that I am facing the end of my days.

Some of the other things we discussed were what the end would look like. With pancreatic cancer, what usually happens is that things are pretty good until the end, then it goes downhill hard and fast. The upside of that is that the quality of life is pretty good until close to the end, so you won't be facing (and neither will I) the long, slow, painful decline that Mimi had.

I also asked what sort of signs w/she would be looking for. Basically, what she will watch for is pain, weight loss and loss of energy. So far, so good. My weight is actually back up to my pre-surgery weight. And she said I can eat anything I want! (One of my student workers gave me a box of truffles!) I am still working, though I am really grateful for having this coming week off. I have been tired this last week, but I think some of it is just emotional exhaustion. Everyone says I have such a positive attitude. I'm glad I manage to project that. Sometimes, it is more difficult on the inside. I don't mean to say that I am being false. I don't think I am, but it is still a process to accept everything.

Then Dr. Pelley called an hour later and I clarified a few more things. He was calling about the blockage that showed up in the Upper GI test. (Chronic constipation. You just wanted to know, didn'ja?) Here is the conversation I had with Dr. Pelley:
Me: I just want to clarify; my cancer has metatstisized.
Him: That is correct.
Me: So the cancer will return.
Him: That is correct.
Me: So it is just a matter of time?
Him: That is correct. I'm so sorry.
Me: It's alright, really. Do you think it is likely that it will return in the muscle again, or is it more likely to recur in an organ next time?
Him: More likely to recur in one of your organs. I think the reason it showed up in your abdominal wall is because it followed the drainage tube path. But it is in your blood system now.

I have decided, not to fire Dr. Pelley, but to let him go. There is nothing more he can do for me. I was hanging on to him and his services to see where I was and to try to predict what was coming. He can't actually do that for me and, what is the point, anyway? Judy has managed to connect me to the Hospice doctor, Dr. Katherine. I'm sure she has a last name, but I'm not sure what it is. She is coming to visit on Tuesday.

Now, here is where the hope keeps popping up. Just because it will come back doesn't mean that it is back or that it will come back right away. I know the cancer is going to kill me, and probably sooner than later, but not just now.

Comments

Thanks for the update.

The cancer may come back. The cancer may not come back. Either way, I appreciate that you have been so consistently forthcoming about your emotions and the state of your cancer. This doesn't have to be a cancer blog (NPR has that). This is your forum, where you can blog about your life, a small portion of which is cancer. I appreciate your efforts because they have helped me to acknowledge and face my own emotions surrounding your cancer and your death. The truth is, I really don't want you to die. At the same time, I'm beginning to value your continued health throughout the whole process. I have come to feel a little more relaxed about your death. I don't think that it won't hurt like hell (kind of like meditating about it doesn't really make a face plant of your bike onto concrete any less painful), just more comfortable with the pain and frustration and denial that I will be dealing with. Thank you, maman, you're wonderful.

Again, to be clear, the cancer will return. It is just a matter of time. The only unknown is how long.

Thank you for updating. Some of the people that I've talked to lately about the state of your cancer have taken the news of this last tumor disappearing as a miracle and proof that you're cured. This post has helped me to identify and verbalize some of my thoughts about the situation and the news. Regardless of that, I still appreciate the update and appreciate knowing what's going on with you in your life, cancer or otherwise.

I think for about 3 nanoseconds, I was one of them. I'm glad you're willing to put up with these posts. I think I write them as much to keep people updated as for me to process what is happening to me. Thanks for listening. All of you.

My dearest Madame Maman...all I can say is the title of your blog...cancer is even such an ugly word to have anything to do with such a beautiful woman as you. All my love and prayers to you. Your family and your joy belie the ugliness of the disease, and you are still...as always, a light of hope and joy.

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