3 More Days + Chemo Tomorrow

How can it be that I have to wait for test results and have chemo at the same time? It seems like the meanest combination of things. My friend Kathy sent this article about how hard it is to wait for test results and it is true. I am not sure that I agree that it is better to know a hard diagnosis than to wait, but I know both are super hard. That's putting it mildly, really it all totally bites.

I had an incredibly anxious morning and it was especially difficult because I could almost call yesterday a serene day. The contrast made today's anxiety even harder. I had acupuncture which was again sort of mysterious. I asked a lot of questions this time. I thought she would put the needles in exactly the same places as last time, but no. This time the she did a organ detox which involved a bunch of needles up and down either side of my spine, one in my foot, and one on the side of my neck. It was really interesting and relaxing. Those needles stayed in for 15 minutes and then she did some acupuncture where she just put the needles in and out - in my knees, shins and the tops of my feet. I don't know if all of this detail is interesting, but since acupuncture is so new and mysterious to me, I want to tell about it. It's not like reflexology or Reiki which are so immediate and hands on. This is almost more of a leap of faith for me. I would have thought it would be the opposite - another mystery, another leap of faith.

I have chemo tomorrow. I am really praying for good WBC counts so that we can keep going. I have felt pretty good to very good for the past two weeks. Of course lots of naps help and Pat has been really concentrating on making sure I eat and have lots of tea. It really makes a difference because I forget to eat and when she hands me a bowl of warm pumpkin custard with cream on it, I just eat it and it even tastes good. I hardly ever think of opening the refrigerator, it just doesn't cross my mind. Jaw dropping, I know.

Pat and Bennett are making cookie dough right now. I can count on hot almond cookies later. I'll give you an update on my weight tomorrow. I have been trying really hard to maintain and even gain weight. Last time I was at the doc, I had gained four pounds. I would like to have that be true again. I am not feeling quite as gaunt as I was. That is a good thing.

Okay everyone one, it's that time again. Light and prayers for a good chemo please. Thank you from the bottom of my heart, I couldn't have made this far without your prayers, help and light. You all are my light.

Thanksgiving Eve

So, it's the night before Thanksgiving and all is quiet. Bennett is sleeping, Pat is poking around the kitchen and I am posting. Not much to report, except I have a new meditation recording that both times I listened to it, at the end I was hungry. I haven't been hungry in months. I have been eating what and when I need to, trying in many cases not to taste, but just to get it down. What is this hunger about? I don't know, but I ate and it was good. Don't get me wrong, I ate an Ensure shake that I make with peanut butter and ice cream - about 700 calories. I make one every day, and it is helping me maintain my weight. You'd think, what a treat, but after a few weeks, it's just another thing to get through - like all the pills.

I digress, the new mediation recording was sent home with Pat from our friend Bobbin, who scoured the library for healing books and CDs. I am going to have Pat listen to this one. It's intense because part of it is imagining one year from now, five years, ten years from now in a healthy body doing the things you love. It's the first time in a long time that I've thought even beyond the next year. Beyond chemo, surgery, pain, hospice, death. You all know, because you all are here with me.

I had a pretty good day. I walked the dog with Pat, came home and took a nap at 9am- I crashed for about an hour and half. That was a surprise. Then we picked up Bennett who had a half day at school, played with her, took another nap. This was not a sleeping nap, but listening to the above mentioned recordings. I am so grateful to have had enough energy to play blocks with B when I got up and then hang out with Aunt Ruth.

I am going to try to maintain an attitude of gratitude for the time being. Remind me if I slip back into gallows mode. Sometimes it's hard for me to get out of it without some pushing and pulling. I have it on good authority from my friend Kathy that gratitude can combat the chemical response of anxiety and fear. I will keep you posted.

I Got It!

Nineteen days after my last treatment, I finally got some chemo. I am so glad to be sitting here with my pump that Bennett says sounds like a kitty meowing. I have been sneezing all evening, and remember the last time the same thing happened. Could it be another strange side effect?

There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.

I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.

What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...

Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?

Mind Full, Body Blank

What a shift today. I woke up fully aware this morning, but so tired. Tired is not even in the same league as how I felt. Exhausted, fatigued? None of it is right. I heard the voice of Sue the chemo nurse, don't spend all day in bed. So I got up and walked the dog. My ears were blown and that makes me feel like I can't really see or hear, so that was pretty uncomfortable. Plus, the walk was brief. I got home and played with B for about an hour and had to take a two hour nap. Pat took B to Aunt Julie's while I continued to spend the day in bed. Mostly giving myself a hard time for being in bed. I wrenched myself out for about 30 minutes, which I spent shakily cutting glass in the studio. That sent me back to bed for another nap. At that point I called my mom and spent the rest of the time in bed, reading, chatting and feeling like it just had to be okay that I needed to be there, in the damn bed.

I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.

No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.

Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?

Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?

I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?