New Trial (for me)

Hi,

I am still here but life has thrown some curves.

We were buying a home but I am just not up to all that entails so we are staying where we are.

I may have mentioned we sold our family home at the request of my grandfather's will (he was the owner). I had to change my mailing address due to that - something I've put of doing for years because I worried it would cause hassles with my SSI. I am still in California so I was hoping it wouldn't be a big issue.

It wasn't - to change my addy for SSI, but my medical insurance is linked through SSI and SSI was not changing my address and I live in another county, which *does* matter where my health ins is concerned because I can only get care in the county I live in.

So, legally, I couldn't use my insurance because my addy is in a new county; and I couldn't sign up for ins in the new county because SSI did not change my address.

I made so many calls to varying agencies and was on hold for weeks.

Finally I wrote to one of our state senators (Dianne Feinstein) who deals with patient advocacy and within 3 days the insurance issue was resolved.

I just got it and have not had a chance to see my new MD yet. When I do I need to request a PET and an onc and see how much farther the cancer has spread.

It's really attacking my trachea and lungs. I shouldn't be surprised as my lungs have always been my weak system.

The cancer in my breast and in the lymph node under my arm flares up every 2 mos or so. It's been doing that for a year - and it was that pain that had me searching under my arm and how I first found the tumor.

Now though, the tumor flare causes sepsis and pneumonia, which is what put me in the hospital back in July. It took checking my medical journal to figure out that a tumor flare always preceeds these conditions. It occurred in July, Sept and Nov.

It's extraordinarily painful but pain meds don't touch it and just make me ill for days...and that's just Codeine #3. My MD gave me percocet but said if codeine is giving me that much trouble to avoid it as it's more powerful and will disagree with me just that much more. I just take to bed for those day(s) and let it pass, but I get on antibiotics right away to clear it up. For now, Zithromax is working beautifully.

I have a chronic cough but I've always had that - it's just worse now.

I called the Mayo Clinic to ask them when they'll begin human trials of their new cancer drug that supposedly "shuts off" cancer and while I am a perfect candidate, trials are still a couple of years off. *sigh*

The clinical trial coordinator talked to me for almost an hour. She feels I am no longer a candidate for mastectomy, regardless of the ulceration of the breast, because of the repeating bouts of pneumonia. She felt that I might never fully recover from the operation in my current state, which is fine by me b/c even a "simple" mastectomy sounds arduous, horrible and scary..

A friend of mine suggested discussing Xeloda with my next onc, and Xgeva. I hear most ins won't cover Xgeva, but if I consider any bone meds I don't want Zometa. I won't get a port and getting a vein on me is hit or miss...and painful. I can barely face the idea of a sub-q injection. I notice the flu shot did not hurt at all, but back in July they gave me a sub-q jab of...heparin I think (to prevent blood clots) and it stung like hell! Never again.

I'm breathless a lot now but Hubby is super helpful around the house He's taking off the 2nd half of December. We've never taken the week between Xmas and NY's off before so this will be an exciting first for possibly my last holiday. His family is coming out from another state and we've not seen them since 2012 so we're looking forward to that.

I've been pretty lucky with this cancer....if anything about this illness can be considered lucky. MD says I had it 10, 15, maybe even 20 yrs before dx and, until last Nov I was completely asymptomatic and did not really begin to have problems with it until July.

I have pain sometimes and other discomforts but as long as I can exist without needing pain meds I'm okay.

I'll talk to an onc when I get one and if I feel I absolutely can't face whatever conventional interventions that are available to me at that time, I'll sign up for palliative care and they'll have to try and figure out a pain mgt regimen. It's going to be gawd awful if I can't take anything morphine-based.

Our governor Jerry Brown recently signed in a death w/ dignity law and I was so relieved I wouldn't have to worry about being in agony but, that law could take a year to get started with all the training they have to give the palliative teams. I don't want to be the next Brittany Maynard and be sick and have to move my life over to Oregon where they have DwD. But my MD (who is now my former MD but also my friend) says she's very concerned I "can't eat any of the fruits from the morphine tree," She is worried about the pain I will encounter. I'm worried too, but not much I can do if I'm allergic except to hope I can find another way to manage my illness.

For now I'm trying to get all swept up in the holidays and have a good time.

I hope you ladies are doing the same