What Happened Today

Isn't that what every blog post should be called? Really, because this is what happened today.

We all slept in until 7:30 and I had to be to church at 8. I washed what is left of my hair and prayed that my ears wouldn't blow (they did) and that I wouldn't be late. Deanna hooked me up with two long-time St Paul goers. Kathy and Tim were the perfect hosts and introduced me to Pastor Barbara who was super nice. The service was lovely and quiet. I will try the 10am service next week, which is supposed to be quite lively. I have an appointment with Pastor B on Wednesday to talk about what it means to be part of a church, etc. I'll keep you posted. I really liked my experience at St Paul's and can understand why a person would want to be a part of it.

I got home and we were all so tired that we went back to bed. There was no actual sleeping because Bennett wasn't quite as tired as we were, but it was nice to cuddle and chat. Pat took Bennett to a dress up birthday party - Bennett was Fairy Dora. She couldn't decide between being a princess and Dora, and why should she have to? So she looked wicked cute in her blue and purple tutu, Dora shirt and purple backpack. She wore that all day- until it was time to trick-or-treat - then is was about 45 degrees. It's hard to see a costume under a winter coat and hat. We had to tell B is was not polite to walk down the street yelling "it's time to get candy" at the top of her lungs. She quickly got the hang of "trick or treat" and "thank you." She got a ton of candy from just six or seven houses, plenty to last a good long while.

I got in a nice nap and did a few things around the house. Made sure the kitty is still on the mend, and that's about it. I have to say that I am not that too happy about tomorrow, Monday. Though I am feeling good, I am worried about having B all day by myself. I am going to keep it a nice quiet day, which she needs more than anything. That means I will have to figure out how to occupy my mind while B gets a quiet day. Any ideas? I am going to look into getting an oncology social worker instead of a therapist. I am going to call UMASS to find out if they offer anything like that. I bet they do. I bet I could see that person the day I have chemo. Wouldn't that be perfect?

My thought is an oncology social worker, or someone like that would be better for me than a nice lady in a home office in Northampton. I've done that, and I need something a little grittier. I do have an appointment with just such a Noho lady not this week, but next. The first therapist who had opening and time and takes my insurance. We shall see. I don't have much hope because I really want someone who is in the world of cancer treatment.  This is good to know and I will start my new quest tomorrow. I suppose one could say I didn't find a therapist for a reason...

Kitty Appears to be Fine

As suspected, Kitty looked much better today and seems pretty fine. She has a cut on her head that I've bravely cleaned out twice and now the goose-egg is gone. She is a tough nut, so she will be fine. Her infirmity reminds me of how fond of her I am. Honestly, most days I just ignore her, but she is a good kitty and I love her.

Another good day. A day filled with good activity and some worry. I am already starting to worry about chemo on Tuesday. Liz is going to take me, so that's all set and comforting. I think I am worried about how bad I am going to feel after treatment. I don't want to spend a lot of time horizontal again. I know it's part of the gig, but I am feeling so much better. I also know that I am feeling better because they reduced my dose again, so I am better able to tolerate it. I am very curious if they are going to give me the same dose, increase my dose and give me Nuelasta, or what? Some other possibility that I haven't thought of. Those oncologists like to keep me on my feet - or should I say off me feet...

Today I started off the day by accidentally taking too much anti-anxiety medication and I had to take a nap at 10am. Luckily Pat and Bennett were off on an adventure and my job was to stay home and rest anyway. I took it literally.  After that I did the laundry, worked for about an hour in the studio, took B to aunties' house and did a very minimal garden clean up. I worked in the garden with latex gloves and a surgical mask. I am not taking any chances. I just wanted to be able to pull into the drive without be accosted by drooping plants. I will do a full clean up in the spring and hope for the best. I try really hard not to leave anything to moulder in my tiny yard. Perhaps this is the year that my plants will learn to toughen up - be Holyoke plants.

I am exhausted to the bone. All this feeling good and doing stuff is tiring. I don't want to pretend that I am not having a hard time at all. There are moments that are super hard and I broke down while working in the studio. Poor Pat was working hard on getting the awning we built about five years ago up and I fall apart. There is no way of knowing when I am going to burst into tears these days. Pat says they are just part of the process. She is right and it does feel good to release the tears. It's just such a bummer.

Tomorrow I am going to the 8am service at St Paul's in Holyoke. I will let you know how it goes. I don't know anything about Episcopal churches, though my mom sent me links for information. I looked and they seem to be much more open to the world and I like that. I will let you know how it goes.

That's it for tonight. Goodnight everyone. And a special request to those who are shy about posting comments. Please do. I love them and they give me a real boost during the day when I check to see if there are any comments. I lap up every word - so please stop being shy and comment.

What Happened to the Kitty?

Our kitty has a big bump on her head. A real goose-egg. I have no idea what happened and we are all concerned. Even Bennett is being nice to her frienemy, the cat. I am sure after a good night's sleep she will be fine, but it's still a little disconcerting. Bennett has a little cold, Pat has a sore throat, the cat got hurt who knows how, and I still have cancer.

That's the thing that gets me. I can have a really good day, like today, and when I sit to write I think, oh yeah, I have cancer. I still wonder how that can be. It's a little like the cat - what the hell happened? At least with her, I can be pretty sure she is going to be better in the morning and by tomorrow night she will be torturing the mice in the cemetery behind the house. Me, I probably won't be up to catching mice until next summer.

I did have a nice day today. I thought since I had such a great day yesterday, I wouldn't have to take the anti-anxiety meds. Ha! I took them yesterday, why did I think today would be any different? Even Magical Mary Ann, told me to take the meds. I thought she would want me to only use some fancy breathing trick, but no. So, I took the meds again this morning and it does make a huge difference. The little pill lets me have my day. B and I hung out for a long time just watching Dora and cuddling. Then I went to get a new phone (my old one was acting weird and the idea of not having a phone is scary for me), went to the park until it rained so hard we had to leave. Then more cuddling and Dora. Until Auntie Ruth and Theo took B to the farm for the very last pick up. I happen to know they saw BFF Avy there and played a game called "dangerous truck." The amount of sand that came out of Bennett's hair at bath time can attest to the fun they must have had.

I, on the other hand, had a delicious nap and played word games on the iPaddy for about an hour afterwards. It was the perfect break. I nap now with my iPad playing wave sounds. I always have the radio on classical and I listen to podcasts when I get to the studio. My mom was right, it just makes life richer to have sound around all the time. I think the wave sound keeps some part of my mind busy so that I don't have as many of the bad thoughts.

I still have the bad thoughts. They are there and I am pretty sure I will never be rid of them. That's okay, as long as I can try to befriend them - to take the power away. They are part of me, after all. I really hate to admit it, but they are. It seems silly that I would have to go through cancer and actually believe that I could get away with not having scary repetitive thoughts and bad dreams. Another surprise.

The one thing that really surprised me the other day, is that I knew some of the things that were going to happen to me - the hair, the nausea, being bone tired, etc, - I just didn't know they were all going to happen at once. I thought I would get the chance to tackle them one at a time. Not so, my friends. They are all happening at the same time. Who knew? To have a couple of good days seems like such a gift. I will take these gifts and thank God and the universe for them. Remind myself of all the good things I have in between the bad thoughts, fatigue and nightmares. So, thank you God and I'll take another.

Over the Hump?

Let's hope so. I feel good tonight - not just physically. I am wary about it, but feel hopeful in a way that I haven't felt in weeks. I am not sure what the turning point was, but why question it? I am exhausted, so I don't have much of a post in me tonight, but I will say that I got a lot done and the idea of tomorrow doesn't make me anxious and give me the sweats.

This is what I did today. I took B to school, walked Z and came home and waited the usual two hours for my ears to come back. During that two hours, I watched TV on the computer and knitted - so that's what I did. I went to pay for the car - ouch. I picked up a rug, some meds, went to the bank, and went to reflexology. All of these things I did in a rather depressed way - not really feeling anything but blank. Was it the anti-anxiety medication dulling me? I don't know, I just know that it was a beautiful day and I didn't really care that much. I even went to reflexology without much hope, but something magical happened on that table. I relaxed in a way that I haven't for a long time and when I left I decided to take myself to the bookstore and get a book. I did. On the way home I saw that B&P were in the park so I stopped to play. Bennett was over the moon- I haven't been to the park in months. I've been paranoid about the germs and too tired anyway. It was lovely and tiring so I went home and made dinner for P&B. What? I did, I made a simple dinner. On my way home, I thought I would fall right into bed, but I got home and wasn't that kind of tired.

Could it be that I am feeling better? I am going to take this one day at a time. I don't know what kind of nightmare will send me back into the land of fear. I mean literal nightmare - I've been having them and they are like nothing I've ever experience. Oh, like so many other things.

Keep you fingers crossed and give thanks to God for this change. I am going to.

Crying for Cabbage

Tonight I actually started crying when Pat ate her dinner. I was so jealous. She sat down to eat some sauteed cabbage, carrots and chicken. Not exactly gourmet, but compared to the Ensure and the anti-gas pill I was consuming...and it smelled so good. I realize now that I haven't had a real meal since I was in the hospital five weeks ago. Sure, I've had my soups and my beef broth with an egg, but my soul wants a plate. A plate with whole foods on it that I can bite into and chew. Ah, to chew, what a thought.

There are two problems. One is the blockage by the big tumor in my colon which means not much can pass through. I won't go into too much detail, but you get the picture. The theory is when the tumor shrinks, the area for what used to be food to pass through would get bigger, thereby making eating easier. There is also the real chance that this part of my colon will actually shrink with the tumor, then I will be in exactly the same predicament as I am now. Time will tell.

Problem number two is the gas. And we've talked about this before. An indelicate subject, but one we all know intimately. The place where the tumor is sometimes blocks the gas from getting to where is needs to go - which is out. So I take an anti-gas pill four times a day. They help a ton, but there is still enough air movement to make Pat turn her head and Bennett to ask if there is thunder in there (a direct quote from last night).  And it does hurt sometimes. Not like it used to, but if I am not super careful about what I eat, when I eat, how much etc., I can get into some real trouble, which really scares me.

And it makes me so sad. Sadder than I thought it would. I guess it's a little like my hair. I didn't think it would bother me, but it really does in a deep and troubling way. I knew the cancer would really bother me, but I just assumed the hair and the food and the fatigue would just be sort of incidental. I knew my life would change, but not so thoroughly. I am not sure what I was thinking. I guess there is no way to know until you get here. I can talk to as many people as I want who've made it to the other side, but I can't know what my journey, my response, will be until I am there.  Sometimes it is as big a surprise to me as it is to you.

Tuesday

Today was an odd day. I woke up from nightmares with a beating heart and super anxiety. It was late and I had to wake B up for school. Luckily, I got her to school on time, walked Zeus and tried to quell my anxiety through blown ears. It worked a little. Then I remembered what my mother said - to take my meds and stop torturing myself. So, day two of taking a tiny dose of anti-anxiety medication during the day. It helped and I ended up getting quite a bit done today.

This is what I did. I waited a full two hours from my ears to some back. I have to sit to get them back so I watched a sort of calming cooking show on Hulu called Avec Eric. I am sure there is something about me and all the food TV I watch while I can't really eat anything. I got the house ready for the cleaning lady. I organized most of B's clothes, worked in the studio for an hour while listening to a Podcast. (Another tip from my mom, never be in a quiet house if you are anxious.). Took a nap for 45 minutes then it was time for B&P to come home. It was a nice day, with an email and call about local churches that are gay-friendly. I am going to try St Paul's this weekend, and maybe the UCC down by the War Memorial in Holyoke next.

Pat and Bennett came home after stopping at the park and carved the pumpkin our friend Sally brought to us. Here it is.

I have to say, I am pretty tired from all the anxiety and the not being anxious in an odd way. It is odd to know what's happening is still happening and not have the physical symptoms of anxiety. I have had weeks like this on my own, but something very deep is triggered in me these days. I guess I just need a little help. Oh, and I also called two more therapists today. We'll see if I ever get one. These two are recommendations twice removed from the original recommendation from my former, very loved therapist. I'm trying to find someone who takes my insurance. There are names that I have that sound incredible, sort of local cancer therapist celebrities who do not take my insurance. I don't have any idea - but I bet they are in order of $150/hour. I just can't swing that. Really, who can? I suppose I should just call and ask, I'll let you know.

Tonight will be a quiet one. I need to just be spent on the couch with Pat and Top Chef.

Eskimo Kisses

Oh, they are probably not called that anymore, but that's what I got from Bennett right before she fell asleep and they were divine. She is divine. What a doll and if I didn't think it would wake her up, I'd go take a picture of her and post it right now. Instead I post a picture of Pat and me, when I had a little more flesh and a lot more hair.

Today was Monday. Mondays are hard because they seem endless. Pat is gone from 8am until past 10pm. It makes a long day with B and I get tired. Today I stole two naps - one while she was watching Diego and another when Sandy generously offered to take over while we all at the library. The library being my second foray into the world after the hospital. I don't think I posted that Dr B. told me it was okay to go out into the world if I used my common sense - I am still not allowed to pick B up from school or go to places packed with people. That makes sense. I have to say, though, that I am still really  paranoid - it was not fun to be in the hospital for a week with some bug or infection that seemed to scare everyone but me. Oh, I was so naive, I am plenty scared now.

So, I had a luxurious nap while B was playing with Sandy and Avy and I realized that it helps me nap better if I have some sort of white noise going. It must distract the bad voices. I played wave sounds and it was lovely.

I also had a call from the pastor from the church I went to yesterday. He was very nice, but was clear that  their church is not open and affirming. This is code for gay-friendly. He said they follow the bible and that being gay is a sin. What a bummer. He referred me to another church in Holyoke that actually broke off from his church to be more liberal. I thought that was very big of him, after all he was trying to get me to a place where I would feel comfortable and not trying to de-gay me. I will try to the new church this weekend - St Peter's on Jarvis. Anyone know anything about it?

That's about it. I tried really hard to do chores and make life seem as normal as possible. I do have something to ask everyone. It is really hard for me to keep my perspective if no one tells about their lives. I understand some of you out there feel like your life stuff can't compare to cancer, but I really want to know. I want normal in my life, too. Oh, we will talk plenty about cancer and WBC and chemo and whatever, but I want to hear about your kids and the crappy thing that so-and-so did, so I can remember that life is more than trips to the doctor, hand sanitizer and endless bowls soup. If I don't get some fried shrimp soon, I don't know what I am going to do. I'd settle for pickle.