ChemoCoaster

A ride you never want to go on - the ChemoCoaster. Up and down, up and down and around. For some people it makes you barf your brains out, for others it's just whips you around until you don't know who you are anymore.

That is how I have been feeling. I just don't know who I am anymore. I have this crazy life of going to different therapies and doctors all the time. I have to arrange for ride because I can't really drive for that long, I have to nap at least once a day, I have no hair on my legs (and other places that shall remain nameless), and I don't really want to eat. What? I never understood when people used to say they ate for fuel, now I do. It's pretty much a must do these days, not a big pleasure like it used to be. And I don't get to floss my teeth, for those of you who are not flossers, this is a big deal for those of us who flossed religiously. And I seriously want to want to eat a feast, then floss afterwards.

I had a nice thanksgiving-esque meal, turkey broth from Theo and Pat's pumpkin custard. Isn't that what Tday is about anyway, the bird and the pie and I got a bit of both. Round it out with some potato soup and it was good. The best part of the day was Pat and I got to have time to ourselves. A nap and lots of talking. We agreed it would be best if I lived a long full life. That has got to be my main focus. I am planner and I have been planning for death. I have to admit this. I have been making sure our money is in order, that all paperwork is in both our names, or just Pat's, I even have the room for hospice time picked out. And now I feel like I have to start getting rid of my stuff so Pat doesn't have to deal with it. It just doesn't make sense to get rid my clothes, but that's how I feel. It is another thing that makes me not really know myself. As crazy as this sounds, some of the things I've done are just good and smart and others are over the top. Pat says she likes my junk around and that I am not going anywhere and that if she died tomorrow, I would be left with all her junk. And I like her junk around, so there.

Tomorrow I have therapy and Reiki. No shopping for me. It's going to be all on line this year for me. I better get at it - only a few weeks until Christmas and I have a three year old who needs more books and Calico Critters.

So thanks for taking a ride with me tonight, I hope you had an excellent feast and spent time on gratitude. I've been talking a lot today about it, and it really helps.

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.

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.

Just Got Up

Yep, I just got up from bed- it's 6pm. I feel a little humanity returning, for which I am incredibly grateful. I was in bed all day, literally all day. Not watching movies, not reading books, just dozing and lying with my eyes closed. Is it laying or lying? I don't know. I am just happy to be up and feeling like maybe tomorrow will be better.

I will tell you what it's like. I've heard chemo described as God playing with gravity, and some days are just days you can't fight gravity and have to be horizontal. I mostly agree with that, but I more feel like the ray guns on Star Trek are set on stun and they got me. Otherwise I would want to read or watch a movie, it feels just like I've been stunned.

I had a very hard time with guilt today. I felt like an utter failure. That not being able to get out of bed is anathema to who I am, and I felt a deep sense of failure. This doesn't help at all. I also wondered if I might be clinically depressed, which happens to people who get cancer. I don't think so. I bet I will know more tomorrow. Both Mary and Pat reassured me that I am not a failure, that chemo is a hard thing to deal with and sometimes bed is the only answer.

Thank God for Pat being able to take Bennett to work at the last minute. Thank God for Ruth and Theo getting our veggies for us and thanks again to the highest power for Liz and Julie taking Bennett for an adventure in the afternoon. All of these folks pitched in so I could stay in bed and work on my WBC.
So many people called to see if I was okay, it was really a wonder to get so much help.

Last night I didn't post that Dr B agreed to the Neulasta if my WBC count if low at my next chemo. He called yesterday to tell me that he is working with the insurance company to get it okayed. He thinks he has a good case because I've already spent a week in the hospital due to a compromised immune system. Neulasta, I've read online, is between $3k and $7k a shot. I don't know why the range, but holy cow! that's a lot of money. Neulasta doesn't come without its side effects- 10% of users get severe bone pain and/or flu like symptoms. If you look at the glass half-full, that means 90% don't. I am going to cross my fingers and toes that I am in the 90%. So far I have lucked out on a lot of side effects - I've only barfed a few times and I don't have the diarrhea everyone talks about. That might be because I only eat soup and Ensure and the occasional yogurt. Anyway, I hope I will continue to luck out.

I feel like I have to say thanks to everyone for your support. This is going to be a long long long shitty process and I appreciate you all sticking with me. I think about it all the time, how important all this support is. How could I have gotten through this day if so many people didn't step in to help? So, thank you from the bottom of my super fast-beating heart.

Quick Post - 30 Minutes or Less

I don't have a ton of time. I have exactly 30 minutes before I need to wake Pat up so we can have our after-Benett-goes-to-sleep time together. And tonight is especially important because Pat is leaving tomorrow for the weekend. She is going to her mom's memorial service in Western NY. In all the hullaballo surrounding me, Pat hasn't gotten the attention she deserves and it makes me really sad. Betty was a fine lady who lived a good and full life and I am glad I knew her.  I will be bold and ask that you all pray in any way you do for a safe trip for Pat - and Betty too, while we're at it.

I had a particularly nice day today. It was rainy and B and I stayed in. We did a lot of nothing much. Just painted, read books, looked for more free children's eBooks (any ideas? I am coming up with a bunch of junk.). Bennett wanted her nails painted - a request out of the blue. Luckily we had green and red nail polish. Now B's toes are green and three of her fingers are red. The red nail polish actually washed off in the bath. I've never seen such a thing, usually it takes years to wear off. We napped and generally had a great time.

I think my super sad night last night helped me connect with B better today. I thought it might be the opposite - make me want to be less close because of my fear of loss. Yay for me, I didn't push her away. It was a lovely day.

My dear friends Ruth and Theo have colds, so are not allowed to come by this weekend. I will miss them while they take good care of themselves. We are all going to miss their usual visit- especially with Pat gone. Luckily I just set up a Skype account and know how to call Ruth. Let me know if you want me account name and we can Skype together.

I don't have much else to report. I ordered my annual pair of birthday shoes from my mom about a month late. They came less than 24 hours later. How do they do that? Why doesn't Holyoke have a Internet grocery service? My sister who lives in England, in what Google maps makes look like the middle of nowhere, has it. This area seems like just the right neighborhood for grocery delivery and a Trader Joe's in the Holyoke mall, maybe next to Barnes and Noble, while we are thinking wishfully.

I am sick of my own sad cooking. Not being allowed to touch fruits and veg make it hard to come up with tasty food from scratch - actually impossible. Anyone out there want to make some smooth, high calorie soup for me? It just has to be smooth and tasty.

This seems like a post where I want people to do things for me. Pray for Pat, deliver my groceries, bring me new shoes, make me soup. Odd when I usually am so independent. Things have really changed in the past few months. I would have never asked anyone to do anything for me - but now it's really the only way I can thrive/survive. What would I do without Theo's beef broth? What would I do without R&T getting our farm share for us every week - not that I can touch any of it, but still. What would I do without Liz and Julie at the ready to take Bennett? There are so many to be grateful to, I can't list them. Thank you all. Really, that's all I can say. Three minutes to spare.

Sorry about that

I've heard from a couple of people that they worry when I don't post. Sorry about that, I just took a break. I think I was watching The Biggest Loser, or some crap. It's actually interesting that I need to learn this lesson again, when I don't post I feel a little bummed out the next day. Like something is not quite right. And if you think about it, so many things are not quite right about now, that I do not need to add another one.

I have two more hats to share with you. This is the winter hat that my sister's friend sent. This friend is a doctor so she knows things...

I look like a skater boy. The hat says Mountain Hard Wear on it. I love it, it's super toasty.

This one is the at I just finished knitting. It is purple with a silver/gray edge. The pattern is from www.knitty.com and designed by a bald guy. It's a hat specifically for bald people.

This is how much hair I have now. That's a big forehead. I am grateful to have any hair and I am sure you all are pretty tired of me posting about me hair. It's still there, that hair. And when it's gone, I'll let you know. Until then, you all can just assume I am keeping it for a little while longer.

My sister, Janna, is coming to visit tomorrow. Just for the day, and I can't wait to see her. I haven't seen her in 11 years. I am not sure how that happened, but it will be a huge treat to see her and just be with her.

I am having a very nice day. Pat worked her butt off trying to get a big window put in, she will finish tomorrow and I can't wait to see it. It will let is lots of light that will effect the new bedroom, the old bedroom and a room we used to call The Rotten Pink Room. It was rotten and pink, now it's not. We have to find a new name for it. The Gallery. Now we just need to get it drywalled and painted...ugh, so many things I can't do. I can call workpeople and hire them. As long as the money holds out.

Last I want to mention the incredible gorgeous handmade quilt my sis-in-law sent. It is so incredible and she made it too! I can feel the love coming from it. I can't take a picture right now because Bennett is asleep and I don't want to wake her up. I did want to mention how touching it is to get something so lovely and loving. It's like getting cancer was the only way I was going to ever understand how truly good people are. I just didn't know and now I do and I can't believe the humanity around me. I am so lucky. Praise be.