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.

That's a lot of Love

Thanks for all the great comments. I do feel the love. I actually do. I have been so sad and panic-y and stressed out that I forgot about the love. And some things happened today that helped me remember that life stuck in sad/panic/stress mode is no life at all. So I am slowly trying to trust that it's safe to come out and that it does not pay to walk around waiting for bad news.

These are some of the things that happened today that reminded me of the good. Aric (Bennett's teacher) met us at the door of the school with a big smile and Bennett went right with him. Aric or Margo meet us at the door in the mornings because I cannot go up to the germy classroom. An amazing arrangement master minded by my sister Mary.  I came home and the cleaning lady, Laureen, told me she is donating her services from now on. That made us both cry big tears. How generous and moving, and how will I ever repay her? I went to reflexology and the Magic Maryann told me my solar plexus is depleted. That's where a whole host of things live including confidence. She's right, my confidence is in the toilet, luckily she told me some exercises to help. She gave me some names for acupuncturists. (I have this idea that I should get acupuncture for my WBC. I have a call in to to Dr B to see if it's okay. I already have an appointment, but it will be after my next appointment at UMASS, in case Dr B doesn't call back on this one. Not really an emergency.) I got home and there was a gentle coconut Thai soup from Beryl with stickers in the bag for B. Our friend Dawn brings B home on Wednesdays - making it possible for Pat to work the whole day. Those were just a few things that happened today that remind me that there are so many points in my day where people help that make my life so much more manageable.  And I haven't even mentioned how hard Pat works. She works really hard.

Bennett just came up to me and gave me a bear to hold so I won't be lonely while she and Pat read bedtime books. Is that not the loveliest?

All those things add up to me feeling better - or does feeling better remind me to recognize the love? Who knows, who cares? It's just good to be a tiny bit out of my shell.

My scan is on the 27th - the Saturday after T-day. We are not going to celebrate Thanksgiving this year. It's just too hard to celebrate a holiday that is literally a feast. So we will be mellow at home and talk about what we are thankful for and I will have some soup and Pat will eat her diabetic meal and Bennett will likely have fish sticks. That's how it works here.

Back to the scan - the follow up will be the 30th and that's when we find out what the last four months of chemo (it will be four months at the end of November) did to devastate the cancer. I am praying for a miracle here and why not? Let's all pray for the radiologist to exclaim "where did all that cancer go?!"

Enough about the scan, there's not a thing I can do to make it happen faster and worrying never helped, so I will talk about my new sleeping hat. When went to the Cancer Connection, they had a lot of hats in a basket. I found a hat that is specifically to wear to bed to catch the hair that is falling out. Now I have to say that when I was first diagnosed UMASS nurses gave me a packet that included a catalog with items such as this. I can't tell you how grossed out I was. These were things for other people. Ha! Now I am so happy that my pillow won't be covered in hair every morning. The only thing about this hat is it is baby pink. Bennett will love it, I know she will. Anyone still interested in the hair saga, I still have some hair, but have taken to wearing hats every time I go out. For warmth and because you can pretty much see my scalp at this point. It's too cold to shave my head, so I just cover it now. I have a feeling this next chemo blast will be the one that really does my head in. One thing they don't tell you is how sore your head gets. I am not sure what it's from, but I'll tell you my scalp is super tender.

My cold is much better.  I feel better. I have felt the love and here it comes back to you. Catch!

A Little Nutella Never Hurt Anyone

I hope. In my quest for mushy foods, and my need from something other than protein shakes and yogurt, I have taken to eating Nutella from a spoon. Can you blame me? Last night I nearly licked the computer when I saw an image of sushi. The hard part is not getting enough tasty food, it's that I can't really prepare things from fresh veg and fruit, so I go for the easy soup packets from the pantry and a fab mashed potato soup from potato flakes that Mary taught me. But really, this gal needs a slice of pizza and some sushi. I will, I suppose, have to wait until my colon is repaired. Until then, send willingness to eat soft foods my way. I will continue to cultivate gratitude for being able to eat without pain now for 5 days!

Now, that's something to celebrate. That and dropping off my pump today. Julie drove in her snazzy car with heated seats - my butt has never been so cozy. I got a chance to talk about some of my fears (ad naseum, poor Julie) and feel much better. Thank goodness.

I will make this a short one, lots of love to everyone. Bennett has a cold, Pat is working on the torch, I am going to watch a little TV on the computer and hit the sack early. Let's all pray for a nice quiet weekend, with lots of good health and healing light.

Super Saturday

I feel almost guilty posting today. There isn't really anything to report. Pat assures me that not having anything to report, is in fact, something to report. I feel really good and it's been 36 hours of feeling good. Yay, I am crossing my fingers it stays this way for a lot longer than 36 hours.

We are still cleaning like mad. I should say my contribution is limited; Pat is madly vacuuming, Mary is at the shops getting a ton of supplies for us. I am not sure about how I feel about going to the grocery store at this point and Pat is only one person. She does so much. I guess this is what everyone talks about asking for help. And it's wonderful to have Mary here to help so much. Not to mention everyone else who helps us every week with Bennett, chemo, mental health check-ins. It's all so good.

Bennett is watching Dora and I am posting after we feasted on chicken soup sent from a cancer survivor friend. Fantastic to eat some soup made by someone who fought such a tough fight and is living fully. It's like liquid life.

We moved, I use "we" loosely, furniture into the new bedroom this morning. Now I have a lovely place to go when I need time to myself. We are billing the room as anyone can sleep there, but I secretly believe it's my room. Light and bright, filled with the love put into it by everyone who helped build and paint. The only problem with that room is it makes me feel like every other room in the house needs to be gutted and redone. Ridiculous considering I don't really have the energy to do the laundry.

Yes, I am still tired after all the rest I've had. I think it's just going to be my state for awhile. It's a weird kind of tired, not sleepy, not really fatigue, just moving slow and when I do I want to sit down. I am beginning to think it's a component of fear, but I am not sure. Moving too quickly might make me panicky? I don't know. I mostly just feel like napping and watching Top Chef. Not really the way to live this precious life. So I lay down a little here and there and I keep the Top Chef for before bed. I think I am sending Mary home addicted. Whoops.

Still looking toward my chemo on Wednesday and making lots of WBC until then. I love all the thoughts, crossed fingers and prayers coming my way. I can feel them, I really can.