A Post with No Name

Too tired to come up with anything clever, let alone descriptive. Since I have no idea what I am going to write about, this post will have to live with the name of no name.

I returned the pump today and got my shot. The WBC shot in my arm. Sue says I can expect to feel pretty rotten tomorrow but not to take to the bed. Ha! That is just what I plan to do if I feel bad. I may do some laundry and other house chores, but I am not going to do anything to exhaust myself. Can you exhaust yourself if you start out exhausted? Some of the more unusual side effects of the shot are pretty horrifying- blue lips and nails for one. I can't help but imagine a deep shade of turquoise. The one called "severe bone pain" is another one I would like to avoid. Sue says the most common bone pain is in the spine and sternum. I'll let you know if that happens to me.

Okay, mind shift. I cannot assume that I am going to feel rotten or be exhausted. I must believe that the day will bring what it will and that I will do what I can. Pat is going to work and Bennett is going with her for a time then on to a fun-filled day with Aunt Julie. That is the family plan for tomorrow. I will give you a full report tomorrow night.

Pray for an easy night for all of us. Miss B who is still in an angry phase, Pat who has been fighting a cold for almost two weeks, and for me just because.

Chemo Yesterday

Yep, got chemo and was so exhausted I went to bed at about 6:30 last night - so no post. Not posting is one of the last things I thought of before I fell asleep. This is what I was going to post "Got hit by a truck, got up, got hit by a truck again, stay tuned for news of my miraculous survival." But I just couldn't get up the energy.  That does pretty much feel accurate.

Right now I am pretty okay. Freaked out about everything as usual. I just wish I could get more hours of the day when I am not scared out of my boots, as my mom says. I have moments when my mind is still and then I snap out of it. I have some great relaxation tapes that help, but I need stillness to be a greater part of my life. Any ideas of how to get there? I will take any and all tips.

Tomorrow I give my pump back and get my first Neulasta shot. Then I have my CT scan on the 27th. I won't know anything about it until Dec. 3 at the earliest. That is the date Dr. B. will present my case to the Tumor Board. That's the multidisciplinary team that decides what the next course of action is. I am having chemo on the 1st, so my guess is that the TB will recommend more chemo. The other choice would be surgery, which you all know I want. It's not really an option until my liver clears up a little. There are so many tumors on my liver that it is not operable at the moment - it might be different from this course of chemo, but Dr. B. said that would be unlikely. The thing about Dr. B. is that he has to tell me a lot of bad news, so I think he's more of an asshole than he really is. Since I met with him yesterday, I think he's a pretty big one. One day he will give me good news and I will think he is a saint, until then,,,

Thanks for all the well-wishes yesterday, they were well needed and appreciated. I am pretty tired right now and have to get a very sad and tired Bennett off to bed. I am not sure what the matter is, but as you can imagine she is stressed out too. It's pretty likely she doesn't know what the matter is either. How that breaks my heart.

Late Night Fast One

Yes, late night is 8pm. I am bushed. Do I start all of my posts this way? It seems like it. I returned my pump today and am glad to be free of it. As reassuring as the whooshing is it is heavy and cumbersome. So, I return it with hopes of getting it back in two weeks. Looks good, after all this was the first time I got to have chemo as scheduled. I almost couldn't believe.

And now I am tired is a weirdly wired way. All I want to do is sleep, but I am not sleepy. I think this is true fatigue- my mind is not where my body is. I don't really like it at all. I will do my best after having a terrible night's sleep with two sick people. Tonight I may sleep on the futon, to be away from the sickies and to get some sleep.

I am eating polenta with creamy tomato sauce. My stomach has been very calm lately which gives me a lot of hope. I continue my very limited diet which I am sure helps, but I also think the chemo is starting to work on the big tumor in my colon. I don't want to get ahead of myself, but I am feeling hopeful. How bad could that be?

Honestly, I haven't been all that hopeful lately. Mostly tired and grumpy about the things I can't do. But a friend reminded me that I can spend this time resenting what I can't do, or imagining the joy of doing the things I am missing next year. That seems like a tall order today, but I can work on it.

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.

A Blank Mind

It's uncanny how today my mind had been utterly blank. Not one bit of inspiration or idea to be had. I can't even muster a scary scenario. Oh, maybe I could do that if I really tried. It's as if all of what has happened in the past week has gone underground and has left me with nothing.

Today I did very little. Took a shower, played with B, folded the laundry and napped. That's the sum total of the gift of today. My friend Ruth assures me that my mind is working things out at a very deep level. That's a pretty nice way to let me off the hook for being either total spaced out, in denial or disengaged - or all three. I will take it, though, because I try so hard to stay present and real that sometimes I just need a day of blankness. Of course the fear is I will be blank forever.

I did fall asleep to the thoughts of working on my stained glass project. That could be seen as a good sign. Or maybe I should just stop questioning and let myself be. Alright.

I feel a little weak and tired today, like I don't really have the energy to do much. It's hard because I don't want to use too many calories to, say, take a walk. What if not taking a walk means I am giving in to being weak? It's such a hard balance. I have to remind myself that I am one day post chemo and that it is normal to feel kicked to the curb. Maybe this entire post has been a way to make myself feel like the way that I am feeling is not just normal but okay.

Texas Christmas Pickles

A cancer blog with recipes? Why yes, why not? Here is my favorite pickle recipe and it's so good you might want to double it. It's good for people who don't can, because you can just stop after the six days and eat them. Yum. Even though I can't eat them right now, these pickles do not last in this house. Come to think of it, Pat can't eat them and Bennett doesn't. Where do all of our TX Xmas pickles go?


TX XMAS Ruth Style.
Makes 4-5 pints
Takes about a week - mostly waiting

1/2 gallon whole dill pickles.
2.5 oz Tabasco (or to taste)
5 cloves garlic, chopped coarsely
1.25 lbs sugar

Drain pickles, slice them any shape you want and put back in their
jar. Add garlic, Tabasco and 1/3 of the sugar. Shake until the sugar
starts to dissolve. Over the course of the following 6 days, add a
little sugar and shake the jar every time you notice the sugar has
dissolved.

At this point you can go ahead and eat them, but I like to can them.

Get your jars and canning pot ready. 


Drain the pickles and reserve brine, bring to a
boil. Remove garlic and pack pickles into pint jars that have been
prepared with two 1/4" slices of lemon and 2-3 cloves of garlic each.
Water bath can for 15 minutes.  Wait a week before eating, if you can!


Other Stuff


What a day! Good and bad, just like any other day. Pat let me sleep in again, and this time it was totally necessary. I woke up exhausted and didn't feel better until I had a nap in the early afternoon. But I get ahead of myself. Woke up exhausted and pissed at myself for being so tired. And guilty. Tired, pissed and guilty. A nice combination for a Sunday morning. Pat got us all in the car for what felt to me like a hideously long hike, but was really just a 45 minutes stroll on a trail on Mt. Tom. My ears were blown out - like on an airplane. I felt like Darth Vader, without any power and cool clothes. So I was tired, pissed, guilty and couldn't really hear anything but my own breathing. 


At the end of the hike, I looked at Pat and said "I am so weak." She took me home, I went to bed and woke up a new person. Bennett quietly woke me and I was so happy to see her. My ears were better, I wasn't weak or exhausted, pissed or guilty. I was just me again. Pat went to work on the baseboards for the bedroom (we are SO close to being done), and I played with B for the next couple of hours. It was a blast. I am so grateful to have such a life. To be able to have enough flexibility and understanding around me to be able to do what I needed to do to get back to my new normal. What a gift.


I have been asking myself why I feel so guilty for being tired. I am not sure why I thought I would go through this unscathed. Everyone talks about how brutal chemo is. Did I think it would be different for me? Frankly, yes. I thought the main inconvenience would be the time getting the treatments. I didn't realize, really understand, that I was going to feel a way I hate to feel - unable. Unable to get up right when I wake up, unable to clean the bathroom because I can't use the cleaners, unable to go where there are a lot of people because of the germs, unable to pay attention to the kid I waited my whole life to have because I can't hear anything but my own breath. And on and on. 


But I am able. And I am not barfing and I do not have diarrhea and the ginger slices help the anti-nausea meds a lot.  So I will take the week ahead of me one moment at a time. Try to be kinder to myself when I am feeling weak and tired. Remember that sometimes my idea of what to do in a day is too much - even on a good day.