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!

Just Another Day

Of rest and relaxation and frustration. I am obsessed with getting this drug that helps WBC counts. All day I have been trying to figure out a way to talk my doc into giving it to me. I've asked twice already that I can remember. Pardon if I am repeating myself, but I can't understand why I can't have it. It's a drug called Neupogen, there's another one called Neulasta. They are expensive and have some side effects. Okay, what in this process isn't expensive (I happen to know my PET scan was $5200), and I am getting to know more about side effects every day. This totally blows.

Don't forget I am coming off being pretty angry about not getting chemo yesterday. I am also despairing of the fact that I have not once been able to have chemo on schedule (supposed to be every other Tuesday).

To be fair, the explanation that I got about not getting the WBC shot, is that they only use it for people who have much more rigorous treatments - let's say every week and it is not possible WBC counts in that time frame. BUT BUT BUT I want to say "I can't recover in two weeks, give me the shot." I will keep you posted on what Dr. B. says, I will call him tomorrow.

Here is the fab quilt that my sister-in-law sent. I forgot to say that Trisha specifically used fabric with bees just for Bennett.

Today was a quiet day - other than the obsessing. I hung out in the new bedroom while the cleaning lady made our house look a lot better. It's hard when everything is so old - the tub has got to be 60 years old, and the linoleum too. So it's clean, but it's worn, and it's ours and I love that it's all clean. I am so happy to have a mom who encourages me to do things like hire a cleaning person. She has an unusual name, so I don't want to use it without her permission, that is why I keep calling her the cleaning lady and not by a name. I did exactly what a person who is neutropenic is supposed to do - sat on my butt and did very little. I watched two TV shows about medicine - Grey's Anatomy and House. You'd think I wouldn't want to, but they were oddly compelling today. I knitted, I painted with Bennett. Here is one of the paintings she did today. Notice the pupils in the eyes - when she was painting them she said "and now the eyeballs." Pure genius.

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.