Hi all,

I don't really feel much like posting, but I guess you all deserve an update. You've all been so supportive. I sort of hate to even post this because it is so depressing, But I guess we all know that everyone here won't be one of the "lucky ones". There is still some hope for Heather, but it diminishes a little more each day.

I don't remember if I mentioned it before or not, but Heather was having quite a bit of pain in her neck, left shoulder and arm. She was discharged from the hospital March 26th and the pain started about that same time. At first it just seemed like a sore muscle. When it got worse, they suspected the tumor might be pressing on a nerve. When it got to the point that she could barely move her arm, one of the docs finally called in a neurologist and he ordered an MRI.

The MRI showed that the cancer has moved to her spine and has already destroyed her 5th vertebrae. The neurosurgeon wanted to operate, but that would have meant postponing chemo, which had already been postponed way too long. They did start the chemo, but feel she can only handle one dose per week, instead of the 5 days every 3 weeks regimen that is usually done. They want to try more RAD even though they have admitted the previous RAD was basically useless.

Having surgery would alleviate the pain and sort of "fix" the spine, but would do nothing to halt the cancer in the rest of her body. The RAD might stop the tumor in her spine, but carries the risk of paralysis. Of course, the surgery has that risk, too. Doing nothing is definite paralysis. Doing chemo is a crap shoot and probably won't work fast enough to save the spine even if it does eventually get the rest of the cancer.

Talk about being between a rock and a hard place. How does one decide the best course of action?
Chances of a remission are slim to none, but they aren't even sure what would be the best palliative treatment at this point. Although they haven't used that term yet, it's easy to tell what they really think. Yes, the chemo might kill some of the cancer, but it is apparently jumping around at the speed of light. Just 3 weeks ago, a bone scan was negative for cancer. Now her 5th vertebrae is gone. Talk about moving fast. It could be anywhere in her body by now.

I won't be posting much anymore because Heather's sister and I are taking turns at the hospital. Someone is with her 24 hours a day. She has a tracheostomy and it is getting very hard for her to cough up all the secretions. She sometimes feels like she can't breathe and she is afraid to be alone. Her pain is so bad she is on a morphine drip of 45 mg an hour with a 2 mg bolus shot every 2 hours if she needs it, which she usually does. She's lucky if she gets 2 hours of sleep at a time. She sleeps leaning forward and sort of doubled over to alleviate some of the pain and pressure in her neck, but then the swelling in her face increases.

Someone finally listened to our complaints about the PEG tube not working (she hasn't used it successfully for more than a week and used it very little for at least a week before that). After 3 doctors checked it, a resident finally figured out what was wrong and it needs to be replaced. Her stomach never really accepted it and has been treating it as a foreign body (which it is!) and has, they think, grown epithelial cells (basically a skin) over it on the inside. That's why it has been leaking around the tube. The fluid goes down the tube, hits the bubble of skin that has formed and comes right back out. (Brian, I know that is probably not technically correct, but it is a simple way to understand it. Maybe you could explain it better if you feel it necessary.)

I also think she might have cachexia. I read that 40% of cancer patients die from malnutrition and cachexia. Pretty bleak odds.

I'm sorry this post is so long. I just had to get some of this off my chest. And, I would like to say again that even though generally she has had good doctors, there is no substitute for being treated at a major cancer center. . No matter how good a surgeon is, he is after all only a surgeon, not an oncologist. And, even though her doctors did consult one another sometimes, they did not work in tandem. Too many things were missed because she wasn't being seen by the right doctor at the right time.

I truly hope all of you are spared the ordeal that Heather has had. I wouldn't wish this on my worst enemy. And I wish I knew how to explain this to her daughter. She knows her mommy has been sick for a long time, but how do you prepare a 6 year old for the loss of her mother? The RAD oncology nurse today gave me a pamphlet about "Kid's Konnected". Anyone have any knowledge of them?

Thanks for all your support,
Rainbows & hugs to all of you,
Rosie