Dilaudid helps with sleep

I got a lot more sleep last night. I started taking Dilaudid every four hours for pain, but it also makes me drowsy, so I sleep more, especially at night.

I do have nausea, so I take Zofran regularly and I eat lots of little meals. I hope that after 8 more sessions of WBR, then I can begin weaning off the steroids - the docs say the swelling goes down after a day- which I am keeping at 6 mg per day if I can, of the Decadron. 6 is better than the 16 I was on. I will deal with a little bit of nausea in exchange for going on more steroids.

I don't know what to expect with the arm, although the doctor said to make sure I take Dilaudid within a an hour of doing radiation. She said itmwill get worse before it gets better.

But at least I feel like I am doing something active for the tumors in my grain and armpit.

I expect that TDM-1 trial in Stockton, if I am eligible for it, won't take place until late September, if at all. Rumor has it, though, that Genentech hopes to have FDA approval for the drug to be give to patients in their home clinics by the end of August.

In the meantime, I am just glad I slept. Even if it makes me tired each day. I just rest and watch a lot of movies on TV.

I do have more numbness in my right arm - the three fingers and now into my right forearm a bit. I try to stretch that arm frequently. I am also back to wearing a compression sleeve on my left arm, although I don't go far up my left ATM, to leave the field clear for radiation. My eyes are also having a tough time seeing thongs up close, so between them and my arms, I don't stay on the computer much. I may have to get bifocal lenses.

Still need to work on financial matters, like insurance for me and Eddie beginning October 1. He is covered also by his dad. I will need to work on that next week.

It is much better to feel positive when I feel better. As my acupuncturist says, I am strong, even when I cry. Just glad Eddie is back East with his dad right now while Iam feeling even more under the weather. I hope I feel stronger next week when he returns home. Best not to look to far into the future right now and take things day by day.

Can't Be Positive All the Time - Although It Is My Preferred State of Being

People who read my blog regularly would generally agree that I am a positive person - mostly looking at the bright side of things.

A person that I don't know (but whose brother I do know and really like and respect) commented on my first post yesterday (about my anxiety and worry) to "stay positive". I will admit that it hit a raw nerve because I was, in fact, not feeling positive yesterday. I realized, though, that she was well-intended, so I can't get too angry or upset at her comment.

I can, however, respond in a way to help others reading my blog about how to respond to my posts that are less than positive.

Barbara Ehrenreich (who wrote "Nickle and Dimed" recently released a book called "Bright-Sided: How the Relentless of Positive Thinking has Undermined America". I will admit to not reading the book, but perhaps I shall. I think, though, that perhaps she has a point. This relentless to "stay positive" all the time forces people like me to mask any negative feelings we might be having - to put on a happy face to make it easier for other people and ignore our own needs.

Without having read the book, my guess is that Ehrenreich might be saying the same thing - as a society, we walk around in public as if everything is okay, when in fact it isn't and that forces our society not to address some really pressing needs or even to ask for help when we need it. It also forces us to pretend as if there is nothing wrong.

My acupuncturist, though, has long told me that I should, in fact, express my emotions whenever I have them and not bottle them up inside. Three years ago, I broke a bunch of plates (and had acupuncture and reiki) to release a lot of deep-seated and long-held anger - from hurts long long ago. I had repressed that anger and needed to let it out. Repressing it leads to dis-ease because you are not acknowledging it and pretending that all is well when in fact it isn't.

So, since then, I've become better at expressing my negative feelings when I have them. I don't want to hold on to them. They need to be released. Writing about them helps me release them so that they don't stay in my body. I need to express those negative feelings. Once I release it and then figure out ways to address whatever is making me anxious or worry or depressed, I feel more in control of the situation. And, that makes me feel better.

Your task, as readers of my blog, is not to try to fix me. Rather, it is to continue to offer support as you all do, and to acknowledge that there will be days when I am not my usual, sunny, positive self. And, that's okay. I can't always pretend that all is well with me all the time. In fact, there is a lot that is kinda crappy. I don't tend to dwell on it because it is what it is. I do as much as I can - and get the help of my medical care providers - to make whatever it is better. But it's a slow process.

So, continue to send me your positive energy, prayers, blessings, etc., because it does help. But please please, don't tell me how to feel or give me commands (i.e., "stay positive"). Everyone, and I mean, EVERYONE, feels negative feelings. Don't repress them. Express them. Get them out of your system and don't hold on to it. Once you do, it's easier to get back into a positive state of thinking. I know, myself, that I have a choice about how I feel. I generally choose to be happy. But there are times that I am worried or anxious or down. I am entitled to those feelings when they happen and I will continue to express those feelings.

I know the power of positive thinking. I have said before and will say again, that I don't believe cancer will survive long in a happy body. You other cancer survivors, you know how I feel; just acknowledging that you do understand helps me in a lot of ways. I appreciate that support and understanding, in the good days and the bad. I LIKE being happy and will do whatever I can to turn around the negative feelings, but I will have those, too. I have strategies to turn those negative feelings around quicker. I do that because it helps me, not because it helps you. I'd rather be happy. But there are times when I'm not and you, as readers, have to accept that, too.

Thank you for your continued support! Keep sending the happy vibes! : )