June 4: Last Day of Not Knowing

4 Jun 2019 5:58 AM | Contact Me (Administrator)

For me this is very similar to the day before surgery. But bigger. I am more afraid now than I was the day before surgery. I know from experience how small the day you get the medical news can seem. What they know. What they want to do next. And also how significant that news really is. It can destroy your life as you know it. So, yes, I am more afraid now than I was last fall when I was first diagnosed. 

Tuesday morning. Grey and rainy. Chilly. I'm wearing the Traveling Sweater that my sister made for me because it’s like wrapping a warm blanket around yourself, and grey flannelette pyjama pants with fleece slippers, all curled up in my chair. Cozy and just right. I know people are unhappy about this cool and rainy weather, but I'm loving it. One day less of hot humidity. Life is good right now. In this moment. 

My husband and I both miss Luna. Her person came and picked her up yesterday. Luna was very happy to see her person, jumping up all over her. Turns out that Luna is only 4 years old. She seemed older to us on account of her bits of white hair in the black, and her calm demeanour. She is a calm dog. My husband and I had a joint moment last night where he came in and said to me, “I miss Luna already, I expected to see her wagging her tail at me as I came in the door and she wasn't there.” I agreed and told him about how I'd thrown a piece of ham gristle onto the floor because I expected her food dish to be there. How quickly we fell back into the dog life. And how nice it was with a calm, already trained dog like Luna. 

The last morning she really got her confidence. She started to take toys out of the toy box on her own and roll the balls around on the floor. I got down on my knees and played the sneaky/tension game with her. She got it pretty quickly, gave me a lot of expressive eyebrow action and we had a good time playing together. After that she did walk around the house with a bit more swagger, like she owned the joint, like she belonged here and felt confident. Play. The power of play. My husband wins them over with his caregiving abilities. He is the one who walks them, and he is the one who feeds them. And that's important. I let him be pack leader. I win them over with play. And physical affection. Baby talk. Well both my husband and I do baby talk. And so it was nice for us. Nice for us to have a dog for a while. And it will be nice for us to have her for a whole month later this summer too. The weekend trial visit worked out well for everybody.

Yesterday was an on the phone day for me. I had a nice, long phone call with the person who is going to come up with a business plan for the office job conference. We clicked. She's a professional clicker, so maybe we didn't really click, but I did try to give her good information. I want to help her make a good, realistic business plan. Of course I am thrilled that someone else is taking an interest in fundraising. She may be doing it for herself. She may have her eye on my job. And who knows, if this goes badly for me cancer wise, she may be the best person to take on my job from here too. I gave her such insight as I have into the office job organization. We talked for more than an hour. She wants to talk to me again this morning. 

So I'll be on the phone again this morning. My old work life. Almost a bit of a hand off it goes that way. But also, perhaps it will be really fun if we end up working together. It might really improve my office job life if I go back to it. Things that won't be known for a while. 

And I gave my friend D a call. We've been watching weather reports from Texas and my husband has been telling me to call them because he's worried about them getting flooded out. I've been telling him that Texas is a big state, not like the little ones that we drive through on our way to Baltimore, but yesterday they were talking about Houston, and so that is closer. And I did call D. It was a long phone call. It was like my old buddy L Skype calls. It was a project for the whole evening. We talked and talked, and we laughed. And it was fun. Partly she is lonely. She is in a new city and her husband works ten hour shifts, and then he gets 4 days off. When he's doing his ten hour shifts she's lonely even though she's done all the right things, the Rotary Club, the church group, the Daughters of the Empire. She's joined up. She gets involved and tries it out. All of it. She keeps busy. But most of her new friends are well into in their seventy’s, and she's still only in her sixties. And she doesn't have anybody who's known her for a long time, who has known her through the ups and downs. So it was good for her to have a long chat with an old friend. And it was good for me too. 

I realized that the uniting quality of my friends, the people I choose to have in my life, choose family is the way they face reality in such an unflinching way. They are smart and they are real. They are a step away from, polite covering things up,making nice pretending everything is good even when it is not. That is what I like in a friend. It was refreshing to talk with D. She was head on and straight about the cancer. Are you all skinny and pale? Did you lose a lot of weight? She was relieved when I told her I was plump and pink. She brother got skinny and yellow. It was hard to see him. Mentally, for my mental health I need my friends like D and L who are straight up and real. I need that. The look on L’s face the first time he saw me without hair, “You knew it was going to happen, you were expecting it, but still it’s a shock to see you like this.” I need that kind of honesty in my life. I'm lucky. I have it in my friends. 

I was supposed to do laundry yesterday, but with all the phone calls I forgot all about it. And I didn't care. I can do it today. Not the end of the world. 

I did do my mountain walk yesterday. And the two rounds of range of motion exercises, and the good bath, and real clothes, and a nap. I knit a bit. And I read a few chapters in the gut book, which is turning out to be an easy read, and quite compelling actually. It's basic info, but also the latest info on how the gut works and each chapter has enough new info that I didn't know that it's actually turned into a bit of a page turner, even for me, someone who doesn't have any gut issues. 

Today is going to be the exercise program. Range of motion exercises times two. Laundry. Phone call with the business plan lady for my office job. Nap. And whatever puttering I feel like in between. Knitting, reading. Whatever. My last day of not knowing. 

For me this is very similar to the day before surgery. But bigger. I am more afraid now than I was the day before surgery. I know how small the day you get the information and the news of what will happen next can seem. And also how significant it really is. So, yes, I am as afraid now and maybe more afraid as I was last fall when I was first diagnosed. 

I remember those last days of not knowing. I remember spending time at my son’s. I remember doing all the cleaning up, the pantry, the windows, the stairway. Big seasonal housekeeping jobs because I knew I was going to be trapped here, and that I might be unwell and trapped and I'd just feel better if I was ahead on that housecleaning. And I did feel better. And actually I'm still happy that I took two or three days and cleaned out the pantry. I still open the pantry door and think, yes, that was really worth it. And I'm glad of the time I spent with my son and the grandkids too. All of it felt right. 

Now it's different. Now if it is the bad news I won't be hanging out here trying to maintain a normal life and setting myself up for a hard go of treatment yes, but with a positive prognosis at the end. Cleaning up with the idea of something to live with and return to at the end. Now if it's bad news it really be the, ‘okay what do I want to do before I start dying. I will drop everything and do that. How much time do I think I have, what will come next how to manage all of that so I get my end of life in before I start any, not so hopeful treatments that may or may not save my life, for a bit or not much longer and at what cost?’ That will be the story. And with that story I no longer give two cents about the pantry, or my finances, or cooking up casseroles to eat later. All of that changes. I'm not exactly sure how it will change. I don't really want to go there until I have to. But I know it will change. And I just want to be in it, really in it, so I don't loose the chance to do those things that really matter to me in some false idea of treatment and routine and future. 

But, for now, we are in the pause. And the mental default is that I will come back from that meeting tomorrow with the knowledge that my cancer is gone now. That yes there will be radiation, and the daily pill, but that these are preventative measures now, not cancer curing. That is the plan. But in the meantime, in case that is not the case, I am not committing to anything. I am not even committing to this bottle garden. I won't care about it if the news is bad. Or I might not care about it. I don't know yet. I am sorta prepared. But it's like being pregnant for the first time. You don't really know how you'll react, what it will be like when the baby comes. Not until it actually happens. 

Why am I so afraid? Why can't I just be comfortable that all is as it appears and my cancer is gone, killed off by the chemo and removed by the surgery. And anything left is too small to detect. And maybe it will grow back to detectable size in three or five years, but really with the extra radiation and that daily pill, it's probably not likely. I will probably be fine, still have to go through the radiation, might qualify for the partial breast radiation trial, and take that pill. And I will probably have those ten years ahead to have a real life. We shall see. We'll start to know tomorrow. One level of knowing. The doctors probably know already. I will know more tomorrow. 

Having a bit of a hard time convincing my husband to go to Camp Comfort this weekend. He just doesn't want to go. But I will bully this one through. I want to go there no matter what the news is going to be tomorrow. Unlikely I will have tests scheduled for as fast as Thursday or Friday. Unlikely I won't get at least the weekend off. And I may even get my husband to leave me out there for the week and pick me up next weekend. I might do that too. Have a week out at Camp Comfort by myself. Either way. Either good news or bad news. A week at the cottage, on my own but with our friend T nearby if I need help. And T even said he would loan me his car. Whip into town to buy groceries. A week in nature would do me a world of good. Either way. I may just make a point to go for it. 

Gonna pour myself another cup of coffee, have a good pee, and be ready to talk to business plan lady about conference sponsors for an hour again, or as long as necessary, and then get on my way to live my day. Laundry. Exercises. Bath. Nap. Simple schedule. Add knitting and/or reading as I feel like it. One more day like this. 

Tomorrow morning will be like a normal morning. Blood test around 11:00 am. Then a lot of sitting around waiting to see the two, always late, doctors. Reading. I'll bring  the gut book, and a little bag of snacks, nuts, cheese, dried apricots. I know the routine. It's been a couple of months since I’ve been in the cancer clinic. But I still remember how to do this. I remember the last time, it was like getting out of school at the end of summer. Holidays are over now. It's back to school day tomorrow. But it might not be so bad. I might actually get to graduate! Think positive. It could be really happy, graduation day!

And then on Thursday, Thursday will be let people know day. One way or the other. Start letting people know. I'll let my family know first. That will probably be tomorrow after I'm done. And then start letting everybody else I know starting Thursday, and start making my next level of plans then too. 

Dispatched: June 4

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