New Trial (for me)

Deb, absolutely agree 110%. Have you watched How to Die in Oregon on Netflix? I'm hoping that legislation passes here in Cali in 16.

I hate that term also. There's a Frontline special called The Suicide Tourist and I hate that term, too. That one is about going to Switzerland to take advantage of their law, as it's open to all and not just residents.

You're lucky to have that choice now, and I totally don't mean that the way it came out as I hope you know.

I recall listening to some Brittany Maynard interviews (she was the face of right to die in Oregon for anyone who doesn't know) and she said she had her cocktail for 6 months before getting ready to use it. She said she felt great comfort in having it there.

I know from personal experience that the illness can throw things out of perspective. I would feel great comfort in those moments being able to say, what happened today was bad - or - I feel really bad today....but I don't feel bad enough to use my cocktail. Not today. I'm not ready.

It's just nice to have it there - just in case. I think in the Netflix special they say similar - it can be a comfort measure.

I know at this point in time that unless I move to a RtD state or go to Switzerland, that when the illness gets the better of me that I am facing a horrendous and painful death that'll permanently scar my loved ones who watch me go through it.

It isn't death that scares me - it's the getting there.

The measure is on our ballot (California) for 2016 but even if it passes it won't go into effect until 2017. I hope it passes, just in case I need it.

I think we need a softer term. While technically, it *is* suicide, it's for a good reason/cause. For me, I like to say, 'my exit plan,' or something like that.

According to the RtD movement, they just call it assisted death.

I just know that people say cancer is supremely painful. My GP is worried for me and gently tries to talk to me about it. When my breast and nearby lymph node act up, sometimes it puts me in bed it's so painful. I try to imagine that pain over every square inch. It's really scary.

Ray gets leg cramps sometimes and he talks about how excruciating they are. The other day he said, "It's the kind of pain I want to run away from - to leave my body to get away from."

It's what I think about with cancer and I don't want to be trapped in a body that feels like that.

Diana, yes I saw that post last night going thru the threads.

We were lucky to have those last sweet moments with our cat and getting to actually hold him in our arms as he left

Kathy, I am so sorry about your husband and glad he got great care at the end. I've had some lousy medical care and hear great things about Hospice, but think it's a shame that some of the best and most compassionate care we receive is only at the end. I've come up against so many doctors who are (pardon my language) pricks. Why not give some of that compassion at all stages of tx?

Deb, I haven't had incapacitating pain like that in a while. It's connected to the spike in estrogen which occurs in the body 1-2 weeks after the first day of our periods. If my mets are gonna hurt, that's when it happens.

I was told today my ins is processing my UCLA request (again) so if they get it right I'll get an onc...eventually.

Right now my GP is taking care of me and she is so sweet. We were talking about pain mgt. I don't need it yet but am really worried:

I used to be able to take stuff like Tylenol/codeine 3&4 and vicodin, and now those make me soooo sick! At the ER they gave me Dilaudid....a teeny little shot (1mg) which was ok - didn't help my pain a lot but I was ok. It wasn't til the 2nd teeny little shot 3 hrs later that I was barfing my head off for 4 hrs.

Even my GP is concerned because someone having no pain mgt during cancer is not a good thing. Everything she can offer makes me violently ill.

I am so sensitive to everything now. I can almost see why CoH thinks I will react the same to all AI's. I hope that isn't true because they're really the only thing I can take against this cancer aside from my oil and I don't even react properly to that (I read some people are over sensitive - that's me).

My GP was also discussing how if the cancer goes into my brain or liver how they may suggest IV chemo again....and SHE said this, not me - she says she thinks I will be one of those who despite all the great anti-nausea drugs they have out there, will be very sick anyway (IF I were to take chemo) due to all my sensitivities.

So I don't know what to do regarding pain control. She says I'd have to talk to an anesthesiologist and have him design a pain mgt regimen tailored to me. I can't see that happening since CoH was so against tailoring anything for me despite my severe sensitivities/allergies to meds.

My GP would like me to have off my right breast. It does bother me at times and the cancer is there on the outside but, I want to keep it for as long as possible.

The moment I have surgery a lot more cancer will be released into my body and for someone who doesn't want rads or chemo, I'd be asking for a faster spread. So far I'm doing well by doing nothing. I'm too nervous to bother the cancer. Though it's in several places, it's being relatively well-behaved and I don't want to piss it off.

I *am* feeling the met in my trachea - my windpipe aches a little or sometimes I get a mild throbbing that stings a little. It's just annoyance right now but I keep thinking of my cat and how he had that mass blocking his trachea. Suffocation is NOT what I had planned for my end.

Deb, PLEASE please explain - I am so scared about surgery. I read that the reason they do chemo and/or rads after surgery is to get errant cancer cells that got away. Isn't it true that cutting a tumor out/taking a diseased breast off will release cells into the body?

If I don't have chemo or rads doesn't that mean those cells are free to land somewhere and grow? Wouldn't surgery be more of a risk for me than for someone who intended to do the additional measures after?

Apologies if I am asking some really stupid questions. I have not done much research on surgery.

ps: my GP is concerned about post surgical pain mgt also

Hi Ladies,

Back again after a long while.

Tomboy, I am going to try and message you about CoH as I'm hearing more and more bad things about them. I'm just in this major, MAJOR depression, as stated before, but I wanted to update again.

First, I may have to go over to the Stage IV forums as I have concerns that can likely only be answered there.

Second, I beg the indulgence of moderators because my topic has veered away from ALT and become sort of just an update blog and it's not always going to be about AltMed now. If you feel my topic would be better in another area go ahead and move it, just please PLEASE leave a note where because I'd lose my head if it wasn't attached right now; plus, maybe someone wants to follow me there.

UCLA - New Update:

Well! I went there ONE time as stated before. They insisted on having my image discs of mammos and a PET scan from Sept 2014. I was afraid to give them over and made them PROMISE not to lose them.

Guess what?

Wait for it....

They lost them!

I've tried to recover them but the place is so huge they can't even keep track of themselves. I could get copies again but time passes and my condition changes and I have a new PET so I'm going to let it go. I don't have the energy with all else happening with me.

UCLA Update 2:

They've been hacked and it's so bad they're working with the FBI and Computer Forensics to find out who did it and, after having just been there ONE time, guess what?

Wait for it....

They feel I've been a victim of identity theft, or could be one!

I'm so excited! Aren't you?

Just another awesome thing for me to worry about. I am now supposed to sign up on this website that's supposed to help me with any issues and look out for me. They're paying, for one year.

Update on family issues:

The will was bound by a trust, thank GOD, so all the whiners had to shut up and leave me alone and now they're being very nice to me because they're still waiting for their payouts.

Their payouts will come from the sale of a home that was owned by my grandfather and he passed last Oct.

My mother and her sister both lived there under his support so now, no house = no support for either. My aunt has gone off to one of her kids and is waiting for her payout. My mom is waiting for hers and I inherit too. Before I got sick it was agreed when this happened that my mom and I would combine our cash and live together with my husband.

More on that in a bit.

Promethazine: I tried it for my cough and, like with a lot of other things, discovered I'm not just sensitive, but actually allergic. It exacerbated the "walking" pneumonia that had been developing since Feb of this year. That's why I was coughing so much.

They said I had Anaphylaxis due to it but I was admitted to the hospital for 2 days with pneumonia and sepsis. My WBC was 17 (shouldn't be over 11 or 12).

It was comforting in a way to know it was bacterial and not the cancer causing it, though my lungs show numerous teeny mets from my PET in June.

They put me in the telemetry unit just in case. I couldn't breathe very well but after a night in the ER I felt so grimy. There was a shower in my room but they said no shower for me. I told them if they refused I'd disconnect the IV and the wires on my chest (my mom is an RN - I know how to take out an IV) and take a shower anyway. They left to talk to some doctor and came back and, suddenly, it's ok for me to take a shower.

I got lucky and had no roommate which was good because I'd have driven her nuts with all my coughing. The upside is hubby came and went as he wished, helped me with the shower, plugging and unplugging the IV from the wall, and bringing me delicious food from Taco Bell and Mc D's. I didn't eat a lot but despite being in a wonderful hospital, the food was awful! Not fit for a dog!

That's over a month ago now. I was on a numerous antibiotics and was fine but when they sent me home with oral Levaquin it made me violently ill (like most drugs seem to do). I had to take 3 8mg tablets of Zofran to keep down each tablet of Levaquin. Fortunately it was just once a day.

I stopped coughing altogether for a while which was great but now I have mild pain in my lungs and I do cough a little. I see my GP on the 24th and will ask her about it b/c my mom says pneumonia can go dormant but not really be gone and what happened to me was an "acute phase." I'd like for that to not happen again but I don't know if it can be stopped.

Back to my mom needing to come live with us:

She is living in an extended stay hotel for now but can't do that forever. She's good for another 6 months or so but I'm in a real dilemma:

My latest oncologist wants me to have something called a "toilet mastectomy." My gosh that sounds awful, like they're going to throw my breast in the toilet! (this is where I may have to go to S4 section). But, it's just a palliative measure to make me more comfortable because the cancer is on the outside of my breast.

I need to try and make a surgeon understand that I'm not certain if I want recon, and thus I'd like her to take both breasts. My kind of cancer (ER+) almost always recurs in the other breast and I don't think I'll have the courage to go back and repeat a mastectomy. And, if this is indeed JUST a palliative measure, it should be what I want, b/c it's not about saving my life any longer, but just about comfort.

I've met this surgeon before, back when she thought I was stage III and she wasn't receptive to what I wanted at all. I hope at Stage IV she will change her demeanor.

I have gone through hell with the will/trust and selling the house. Hubby works all day and my mom can't do anything with computers and just waits for things to happen. She's always been like this which is how she ended up an RN living at home.

Now I have to face a surgery I'm super scared of because I'm not sure if they'll be able to manage my pain b/c all pain meds make me really sick. Then I'm supposed to recover from this and look for a house for the 3 of us...all this in 6 mos!

I've had anxiety attacks that nearly required calling 911. I can't even take my oil anymore b/c I had switched to rectal administration, and without going into specifics, my anxiety has me in the bathroom several times a day. Even Lomotil doesn't help me, and that's a miracle pill when you have the runs.

I shake almost constantly. I can't stop the anxiety. I take xanax at night and my GP gives me enough for round the clock administration but, it makes me so sleepy I don't like taking it in the day.

I once had surgery and panicked so badly they nearly canceled b/c I was turning blue. That's the level of fear I have. I think that may be the mystery why blood tests are so difficult. All the techs during my last hospital visit said I was the hardest person to draw from they'd ever encountered.

When you're really scared all your blood rushes inward to your core. Your arms and legs get clammy and cold. That's what happens to me so even when they finally get a vein there's no blood there.

Painful blood draws = fear = cause of painful draw. Every pain med I've tried makes me violently ill = fear of surgery = fear of IV insertion/finding blood/veins = pain and it goes round and round.

If I were rich and famous I'd check in a day before surgery and have them get me loaded up on IV anti-anxiety meds. I'm sure my insurance won't cover that. I may look in to the cost and see if my inheritance would cover it. I get so frightened that my oral meds don't even touch it.

My onc says she can't even try to treat me with ANY tx (chemo/AI's etc) until the one breast is off...and I'm still deciding if I even have the guts to try any of those after what happened with Ax...let alone have the courage to do this surgery. Even if I DO try chemo, I'll feel like crap and still have to be looking for a house so my mom can come stay with us.

Of course I can put off surgery and look for the house first, putting my health aside to help my mom but no one wants me to do that, not even her. It all just makes me shake and panic every waking moment.

To those who've emailed and messaged me, this is why I have not responded. I am truly sorry, but ever since my grandfather passed and thus, his support for certain family members, everything has fallen to me and life has become a giant mess. I am the only one in the family he trusted with all of this. He would feel terrible if he could see what's happened but there was honestly no one else to handle the family save for me. I am the most responsible one of all the members, hence being left as executor.

I will come back here when I can. Please PLEASE know I have never forgotten you gals and I think of you almost daily.

I am a secular person, yet I am spiritual. Whether you pray and regardless of who you pray to; or if you just talk to the universe, please put in a good word for me. I can use all the prayers/good vibes/positive energy I can get right now.

Thanks, and much love xx