I'm Still Out

Post surgery with my prayer shawl and party hat.

Not that I was planning to go anywhere, but it's still a marvel that I get to be home. I am healing and feeling. That's all I can say. I am pretty sore, still not using any pain meds. I think all of the mental prep I did before the surgery has really helped. I listened to my healing meditation recordings literally all night at the hospital- when I woke up (or was woken up), I would just turn it back on. I took Arnica, after talking to the surgeon about it. He didn't know what it was, but diligently looked it up and before the surgery told me I could "take that plant" if I wanted to. I did, so I did.

Nancy the acupuncturist, is coming tomorrow for a house call. She will give me a treatment and then while I am resting, she will give Mary a treatment for her frozen shoulder muscles. I can't wait to see her.

All and all it's been an okay day. I have been going between elation and sadness. It's exhausting. I think we are all really tired. I went back to bed today for what I thought would be an hour and Pat woke me when she checked on me 3 1/2 hours later. I will probably do the same tomorrow.

I thought I would try to get the church in the morning, but right now that seems like overdoing it. I will have to miss a week, which makes me sad. I really get a surprising amount of sustenance from going to church. I will miss it.

Tonight I got to eat pasta for the first time in a very long time. It was delicious. I am so grateful to be alive today. Even sore, even with the chemo coming up, even with everything, today is a good day.

Merry Christmas

And it was. We all woke up this morning and were having a good cuddle when Bennett realized it was actually Christmas morning. It took a full two seconds for her to run out of the bedroom and start at the presents. She was done pretty quickly and we had fun playing with her stuff all day. She cried really hard when her tribe of Aunties left. She loves her new scooter and rode it back and forth through the house all day. We also watched Willie Wonka and tried to get her to use the potty. It was a BIG day.

I am trying my absolute best to try to stay present and really be in this big day. Nancy, my acupuncturist, says that I cannot fully engage in my life if I am constantly steeling myself against my sadness and anxiety. So I remind myself that I am alive today, that I have to give the future (even the next minute) to God so I can be held through all of this.

We are getting a storm tomorrow. I just looked at weather.gov and it says 9-13 inches possible. Well, that makes up for the lack of snow so far. Snow Monday too. That makes me a little nervous for travelling to Worcester for the pre-op visit, but the MassPike should be okay. And here I am worrying about the future, when I said I was trying not to. Let it go, already, will you?

Three Hours on the Ipad

That is what I did with B today and now I have an eye-ache. B is sick so when I got home form acupuncture I thought we would take a nap together. Ha! We took the Ipad for a spin and didn't stop. B is completely obsessed with puzzles. I think we have every free kid's puzzle available on our Ipad. I even bought a few. The ones that cost are a lot better - I have to say. I even broke down and got her a dress your princess paper doll-like game. She was enthralled for an hour. I was shocked at how slutty the clothes were.

Acupuncture was amazing today. The session lasts an hour, the actual acupuncture only takes about half that time. The rest is talking. I feel like I get so much out of that time, like maybe she should be my therapist. She works through this belief system based on The Work. I don't know much about it, but it certainly makes me feel better. She helped me understand that if I believe I will be in pain after the surgery, then I will. If I take the next three weeks and remember that I am a fast healer, and have a high tolerance for pain (both of these things are true), then I don't have to be in so much pain. That I will be in the pain I am in, and that it that. It was very freeing. What happened to me, is that I have been listening to other people's stories about the pain they were in and making it mine. It's not mine. Mine has not happened yet and you will know what it's like in the most minute detail. I will see how I feel Jan 3rd or 4th to see how I can get a post up.

In case you are wondering, the needles went into my head, feet, ears and hands today. I also realized that my ears don't blow anymore and the neuropathy I was starting to feel in three of my left hand fingers is gone. These are things we've been working on. I don't know if it's that I am getting a break from chemo or if it's the acupuncture, I don't care. It's just so much better.

The Cancer Connection is closed the week between Christmas and New Year's, so I lined up Reiki and acupuncture on my own. I want to make sure to continue to get all the help I can until my surgery, then I have lined everyone up to make house calls. I also got some homeopathic arnica to help me heal. I will tell my surgeon of course, but I am psyched to have all the help I can get.

I have a touch of a headache so I am going to get to bed early. Good night everyone. Sweet dreams.

January 3

That's the date of the surgery. Monday, January 3. I have some tests the week before and I am sure there will be some at home prep before the surgery, but there it is. I have such conflicting feelings about it. I am happy that I am in the right place health-wise to get the surgery, but I know it's going to hurt like a mother f'er. I can do it, I know I can. I am going to do every thing that I can to heal as fast as I can. I have an appointment with someone who is going to help me through something called Prepare for Surgery Heal Faster. From what I understand it is a custom visualization tape and process that will help me heal faster. I like that. I've also asked my acupuncturist if she will come to my house after the surgery and she said yes. Tomorrow I will ask Magical Maryann if she will come too. Knowing that these powerful healers are coming will also help.

I had acupuncture today. I can't really say why, but I love it. I love how subtle it is and how ancient it is. I came home and my intention was to listen to my mediation tape and then do some things around the house. Two hours later, I woke up. I am just going to call this a healing day. Because that is what I did, acupuncture then a nap, next thing I know Bennett is home and we are hanging out. What a lovely soul she is to have around. Don't get me wrong, three and a half is a hard age, so many questions and so much observation that it can be exhausting. But she is so fun.

She has a pretend grandma who lives in Springfield who is sick and has to go to the doctor a lot to get shots in her stomach. She is very sick and sleeps all the time. We talk about this grandma and every time it takes all of my strength to ask her more questions so she can talk about how she is really feeling about me. I know it's not fake-grandma she talking about, I know it's me. I try not to let it break my heart, and know that it's just her process and I have to honor it the best I can. I just wish with my whole heart that she didn't have to go through this. I wish I didn't have to go through this. I have to ask my therapist how to talk to her about being gone for surgery and coming back in whatever shape I come back in. I was going to say I was going to come back in fragile shape, but I am really coming to believe that my mindset has tons to do with how I feel. Okay, the light headedness is not really something I can control, but I think part of the reason I don't feel nausea is because I don't think this chemo makes me nauseous. I stopped taking about half of the medicine because it was making me drowsy and I feel fine. I even ate an Oreo cookie tonight. That is not soup. I hope I haven't done something terribly wrong.

Thank God I feel fine. I am going to try my best to make this break from chemo as good and productive as possible, with a little Christmas cheer mixed in.

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.

Warrior Napping

That's what I've got to think of my days as - warrior napping to support my healing and fighting. I went to my first acupuncture appointment today. It was really different than I thought it would be. I thought there would be a lot more needles and that they would be in my abdomen and feet. Nope. Nancy, the acupuncturist, put about six needles in my left ear, one on the top of my head, one in my abdomen and a bunch on my shins. I really felt the one on the top of my head - it was like a full body shiver. That was my feeling the chi. That was it, then I spent about 20 minutes on the table with the needles in, almost fell asleep, and was told to go home and take a nap if I could. She didn't have to tell me twice, as I am becoming an expert in napping. I went home, ate some potato soup and yogurt, hopped into bed and woke up when Pat got home an hour and half later. The idea of the nap was so my chi continues to flow down towards my shins. I am not 100% sure about this last part, but that's what I walked away with. I will be going back next week.

So I have become a person who goes from acupuncture to reflexology to therapy all in the same week. This week, though, Magic Maryann is away so I will be going to Reiki for the first time. I am excited to try this, but know I will be back to reflexology as soon as I can next week. I know all of these complimentary therapies help in ways I can't know. I just know they feel great and I am lucky to have the time and resources to have them.

After I woke up, listened to my new favorite relaxation recording, I met Pat and Bennett at the park. It was a fun 15 minutes before it started to get dark. Bennett and I walked home together and she told me about her day. The word she learned today was "mega." Mom-o let's go mega fast, mega high, you get the picture.

Pat came home from Snow Farm with Zeus who had rolled in manure. He had to have a bath and is still stinky. Why are dogs so disgusting sometimes? And today Laureen came to clean the house, so to have this stinky but clean beast running around in our newly cleaned house seemed wrong in so many ways.

Tomorrow is the day before Thanksgiving. Pat and I have decided not to celebrate. Bennett will be going to Aunt Liz and Aunt Julie's house for a big feast. That's the part that keeps us from wanting to participate, well I should only speak for myself. A big feast with no way to eat any of it seems like torture to me. And right now I am feel so desperate for a feast that I know I would leave the party having eaten too much and not the right things and then I would be in pain. So no party for me this year. I keep reminding myself that this is my year of missing, and if I can get through this year, I will have the joy of doing all the things I didn't get to do this year again. I can hold on for that. Hold on with me, will you?

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!