Up and Way Down

I had such a crappy day. I don't even really know how to describe it. It started with night full of hot flashes, at least five shirt-soaking flashes. That made it very hard to wake up and take B to school. P& I did it together for a couple of reasons, I am not sure I should drive on an opiate, and we had an appointment with the herbal healer. That part of my day was great. It was nice to have to Pat there, to give her opinion and remind me of things. I have come to realization that I tend to automatically say that I am fine instead of saying the list of things that Pat remembers. I have to say her memory is much better these days.

I spent the rest of the day having hot flashes during my nap, then I ate a grapefruit with Bennett and just sat and held her hand for a while. It was lovely. Then I had to get to bed again. It feels like the only place I want to be. I am really crossing my fingers that Sharon can help me with the hot flashes. I think they are why I am so tired all the time.

I have reflexology tomorrow - and so does Pat. It's going to be good for both of us. I hope that tomorrow is better- actually what I want is for tonight to be flash-free.

Dail-A-Dude is Back

So today I had another meeting with Cooky, my hospice nurse. She is great and makes me feel like she is totally on my side and will take care of me no matter what. How nice is that? We were talking about pain meds and my meds journal and were brain storming what to do. She had a couple of good ideas, long acting this, a patch of that, etc. Then I said, let me look in my medicine cabinet and see if I have anything else - since we decided the Vicodin and Oxycodone were not cutting it. She told me and Pat that we had done a good job cobbling together pain management with just what we had in the cabinet and no coach. Anyway, I brought out good ole' Dilaudid. That's the drug that they gave me too much of when I was in Holyoke hospital and I had to call Bob to talk me down. Anyway, Cooky was happy to see that Dial-a-Dude and that is what I am on. I took the first pill and went to bed. Twenty minutes later I was ravenous, and had to get up to eat. Then I just wanted to hang out. I felt like my old self. It was wonderful. Cooky worked out a plan with Dr B and that is what I will be on for at least the next 36 hours. He wants to know it's working before committing.

So it was a pretty good day after all.

In case we didn't already know that Dr E is quite possibly the lease competent member of the medical profession, she called again today. She called to tell me the physical therapy associates she referred me to, don't actually do pain management, so she referred me to a sports medicine practice. That ought to help. And never mind that all this time she's been screwing around, I've been in pain. What the F*?

Tomorrow I am taking B to school, I have an appointment with an herbalist. I am not convinced about going, but Pat is coming and I think it will be interesting to see what she wants to know. At this moment, I would rather just continue to see Nancy, but I will go with an open mind. And I will let you know about it. Now that we seem to be on the right track in terms of controlling pain, I am sure I will have a more varied subject matter. I want it too.

Pretty Crappy

Today I think was my day to I realize just how bizarre and unlikely what is happening to my life truly is.  In the past three weeks everything has changed. I feel terrible physically and just realized that it's not temporary. This is it, this is what I chose when I didn't want any more treatment. It's pretty crappy and it makes me mad. Really furious. I have been swinging between exhausted and furious today. I spent most of the afternoon in bed because I knew I would not be able to be pleasant. I had a grumpy word for everything. I took myself out - I didn't want to grump all over Pat and Bennett.

So, needless to say I didn't get much done. I did get to talk to Ruth, Mary and my friend I have known the longest, Theresa. It was fun, even though I pooped out at the end. Bennett had fun with Aunties Julie and Liz and that is pretty much it.

I think I should log off - I am still pretty grumpy.

Ugh!

I have not had much luck today handling my pain. I messed up taking something a little off schedule and that was sort of that. Pat helped me sort it out late in the afternoon, and I have been feeling better. I can now say with confidence that I need pain meds all the time. What a bummer. It's like I went from needing nothing to be cautioned about taking too much Vicodin.

I am not going to post much, but did want to mention that I am beginning to believe that Bennett is one of the luckiest kids I have ever met (aside from the dying and all that). She has so many people who love her and think about her so much. Just this week she got she got three packages in the mail - a box with books from Jessica (that I have read to her no less than 10 times), a Hello Kitty bikini for the trip to St lucia from Aunt Joanne and Cousins Libby and Carly, and yesterday she got the photo album. It's really for B, even though yesterday I made it seem like it was for me.

Aunt Ruth came over for breakfast and a playdate. I saw her for about 3 minutes, Bennett got the rest of the time. Then Avy, Brad and Sandy. Everyone went to the park - I took a nap. Then it was playing. Bennett had a hard time sharing and that was the end of the playing. She was over tired and hungry. She has a very hard getting enough food in her when she is excited.

That's about it. I will post more tomorrow. I have to leave you now to dive into the big bowl of delicious chicken soup made by my personal chef, Pat. She is getting to be a very good cook. Lucky me!

Happy Inside

My sister Janna and my mother sent Bennett an absolutely wonderful photo album of pictures of me and my family (or origin) since birth. I just looked at it with Bennett and she knew who I was until about 12 - then it was the 80s. Eeeek. Did I really do that to my hair on purpose? What about all those earrings? And the make up? I hardly recognized myself. There is one picture of me and my sister Mary - and Bennett asked what Aunt Mary was doing. My answer - hitting me. She also looked at a picture of my sister Mary when she was about 10 and wore little round metal glasses and asked me why I was standing next to Harry Potter.  My heart is 5 times larger than it was before we got this photo album. I love my family so much. They are all so amazing and loving and I am so lucky.

Today I met with Hospice for the first time today. It was great. My assignment this week is to keep a pain journal so they can decide what the best meds will be for me. I am happy about that. I feel like they totally have my back, and that feels great.

I got to talk to poor Jessica and her poor screaming babies today. I hope they have a better night tonight. I can't wait until we see them all again.

Tomorrow it's Aunt Ruth in the morning, Avy in the afternoon. Fun all day. I already reserved a sleep in for the morning - it's going to be good.

Olivia + Polly Pocket = True Love 4ever

Olivia and Polly Pocket got married at our house today. Bennett was very excited and it was a big event - attended by many dolls and toys. Only about 15 minutes after they married, they had a little bunny critter baby. Olivia and PP were overheard saying they wanted daughters just like Bennett and Avy.

I don't have much time to post, but I will tell you all about calling Hospice today. They were wonderful and we will meet with them tomorrow.  It sounds like they will be sending a nurse to check in on me every week (once the insurance etc is worked out) and that they have an array of pain meds they can use to help me feel better. I am very relieved to get hooked in with these guys, I think it's going to make a big difference - I have been feeling a little abandoned lately - and confused.

I gave my stupid primary care one more chance. I gave her a chance to recommend a pain management specialist. So she referred me to a place that does physical therapy and other things to help people heal. What a dope. That's all I can say. Thank goodness Hospice can talk to Dr B to get things going - they (Hospice) said that it took one call to get all the info and records they need and were really impressed with how nice he was. Hmmmm.

I had an epiphany about pain meds today. I have been trying so hard to stick with what's on the bottle - one pill every four hours. I decided I am just going to take what I want, when I want. It's not going to be long until I am on a real pain regimen, and even if it does long term damage, I am not going to worry about that. I am much happier when the pain is under control.

That's about it. I had reflexology today, and Maryann gave me the deluxe treatment - she did my hands, feet and neck. It was divine. We should all be so lucky as to have something as wonderful as reflexology and/or acupuncture every week.

More tomorrow. Love to all.

Better Day, Yay!

This morning was little rough, but things got better as the day progressed and now I feel positively happy with not having that searing pain I had yesterday and this morning. I think it is related to my kidney stone - that mysterious pain that I get every once awhile that makes me really have to moan and groan out loud.

I had to call my stupid primary care physician today. I called to get a referral for a pain management specialist. I know Dr B is my doctor, but I need someone local who I can feel like is on my side and only about the pain (and not the cancer, etc). So she has her assistant call me and ask me if I was calling to see her, because she hasn't seen me in so long she really doesn't know the details of my case anymore. I told this assistant that I was sure that Dr E. was keeping up with the reports my oncologist has been sending regularly, and that if she needed to refresh herself, she could reread them.  And that I wanted an appointment with a specialist, not her. The assistant was so sure that I would want to see Dr E before seeing the specialist, and I would have if that was the price to get to the specialist, but I don't think I will have to see her. I am not sure I would be able to be gracious with her anyway.

I spent most of the morning lying on the couch, moping. I was in pain and that makes me really grumpy. I dozed, but didn't knit like a thought I might. Maybe I did knit, because looking at my project pile I see that Matilda's hat is done and Stella's is started. Knitting in an altered state, I guess.

I had a long and luxurious lunch with Ruth. We went to the bookstore afterwards, and just hung out. It was so much fun, I just didn't want the hanging out to stop. I think this is when the big pain started to subside. Anyway, then I went to pick up a very grumpy Bennett who had to have her hair washed at school because she and her friend Estelle decided to rub frosting in their hair. She thought it was hilarious and got grumpy when I did not think it was funny. Sometimes I've just to be the hard-ass.

Today was Pat's first day teaching the new semester at Hamp. Bennett and I had a very nice evening together and now I am going to do a little knitting and TV watching. I did try the Oxycodone last night. That stuff is very strong and makes me super loopy. I think I will only take it at night until I have other directions from my new pain person. Let's all pray that I get a good one, quick.