Rarin' to go

I signed all the consent forms to begin XL 184. Now I'm just waiting for coordination between all my "ologists" to get things going. My blood thinning drug still has to be decided upon- it will be an injectable. I'm not happy about that, but will suck it up for awhile so I can do the clinical trial. If everything goes well, then I'm looking at the first week of January to get started.

I think I'm getting a handle on my meds. I've adjusted to my round the clock narcotics in that I can function on them. I still have break thru pain but handle that with Dilaudid. My bladder problems are getting better it seems- I'm not getting up 3 or 4 times a night to pee. But that could also be attributed to the sleeping pill (Ambien) and the addition of Elavil to make it last longer. I'm actually sleeping a bit now. My bowel problems are still there. I'm waiting to get hooked up with a GI doc for a colonoscopy to see how far up the blockage is. 

I know I've had a lot of negative posts and thoughts lately. I'm sorry. My whole life isn't one big stormy cloud- I do actually experience great moments of joy. I got to keep my grandbaby for a few days last week. We had a Disney Princess movie marathon (my mom has ALL of them), with some Alvin and the Chick-mumps (Emmy's word) thrown in. We had a wonderful time together and luckily, I didn't have to go to the hospital for anything. Thank God for small favors.

The holidays used to make me so sad! When I lived in Chicago, I'd get all weepy around Christmas because I couldn't be with my family in Arizona. Now I'm back in Arizona and actually LIVE with my family, but now my kids aren't here for Christmas. My Boyo just flew out to Chicago to see daddy dearest, and my girl plans on staying home in Flagstaff to try to establish her own Christmas traditions with Em. I could go up there,  but I can't leave my mom home alone at Christmas, and she doesn't want to go. This will be my first Christmas back at home with my mom, so I want to make that special for her. I'll figure it out. I want to take a trip to California for New Year's and spend some time with my Other Brother. I haven't seen him in a few years. If I can swing it, I'm going.

I hope I start getting phone calls from all my docs soon. I want to get this show on the road.

Peace.

Contempt prior to investigation

Hello, my friends. I'm sticking my head up out of the rabbit hole to give you the latest scoop on Patty in Cancerland. I'm on round-the-clock morphine, with dilaudid thrown in for break-thru pain. I don't know how coherent this post will be, but I can get out complete sentences without slurring now so I'll give it a try.

I have a question for you: How many of us outright refuse some sort of test or treatment or program due to hearing only negative things from people who have already tried it? Whether it's AA or trapeze lessons or cancer treatment, I think we all do it. Last week at my support group one of the members gave me this quote: 

"There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance- that principle is contempt prior to investigation."

What a great quote. It basically means that we shouldn't dismiss things without thoroughly checking it ALL out for ourselves. This quote applied to him (my support group buddy) when it came to getting radiation as part of treatment for his rare liver cancer. All he'd heard about radiation was how awful it was, how it didn't work, etc., so he flat-out refused radiation from the get-go. Finally, after much argument and persuasion from his doctors he went ahead and had the radiation. And it saved his life.

I had a follow up with my oncologist after being discharged from the hospital last week. He is getting very antsy that I'm not doing anything as far as treatment for my growing tumor. He strongly encouraged me to reconsider the clinical trial for XL 184. He also hooked me up with the radiation oncologist to see what he thought.

The rad/onc spent a great deal of time with me and discussing my previous scans. I will need a new PET scan to determine if my tumor is treatable by radiation or not. We are awaiting authorization from the insurance company (state aid) if they will allow another PET so soon, since it has only been 2 months since the last one. The rad/onc did say that radiation would help with my pain, at any rate. I assume that tumor shrinkage = less pain.

The clinical trial oncologist spent a lot of time with me explaining the drug which I am to try. XL 184 is getting a lot of positive response in tumor shrinkage. Yes, it also has a lot of potential adverse side effects, "potential" being the operative word here. He urged me not to make my decisions out of fear. At any rate, I have decided to go with the clinical trial for XL 184. I have an appointment on Friday to sign all the paperwork. Hopefully, I am still eligible for the study. We have to coordinate with my cardiologist since I'm on Coumadin, and I will have to discontinue it during the study.We'll need to figure out some other blood thinner to use so I don't have another pulmonary embolism. That would just SUCK, ya know?

I'm on round-the-clock laxatives with my round-the-clock narcotics but my bowel issues are still vexing me. My tumor has increased in size to where it's causing blockage. Now I have to go see another GI doc to get a colonoscopy. That's one scope I haven't had yet and I'm not looking forward to it. I'm back to daily doctor visits, tests, follow ups, etc. I'm still not sleeping so my PCP has added Elavil to my Ambien. I am trying like hell to stay OUT of the hospital.

I guess I've been isolating myself while the world moves on around me. There aren't a whole lotta people I can talk to about all this, except those who have been through it. Each time I have to go back to the hospital, see yet another doctor, or get bad test results- it all takes more out of me. I feel so alone sometimes.

Meanwhile, back at the ranch. . .

I got my packet from the new onc with info on a clinical trial he thinks may be beneficial to me. The trial is for a drug called XL184. I have a lot of information to process before I make any decision. I was very impressed with this new guy. When I asked him his opinion on alternative medicine he said "Patty- I couldn't sit here and talk to you about experimental treatments without having an open mind about other treatment options", and he gave me a card for a Naturopathic Oncologist that he consults with. He is all for things that make his patients feel better, and all the patients he's referred to him have reported just that.

My pain meds have been upped to a Fentanyl patch. I'd been taking dilaudid all week, with little relief. Neither seem to do much for my pain, but instead make me tired and loopy. Will have to discuss this with oncologist. My shoulder is still whacked out. I'm waiting for the MRI authorization to go through, and will start physical therapy next week.

I think my get up and go musta got up and went. I'm so tired.

 Ain't it always the way? The good, the bad, and the ugly- battling it out. At least for me, it is. I'll share the good stuff first: 

Tomorrow (today,actually) I get to attend a conference on Ayurvedic Medicine. It is a free program sponsored by the Ovarian Cancer Alliance of Arizona. I am so lucky that there are so many programs in Arizona for cancer survivors! And this one is right up my alley; exactly the kind of stuff I'd like to integrate into my healing program. I'm sad that I have to miss my monthly ovarian cancer support group at TWC, but half of us are going to the conference anyway. There's free food involved. : )

The Boyo and I went to the kid2kid thing again on Tuesday night. We met a couple new families, diagnosed a month ago. I wish I'd been able to get us started with TWC within a month after diagnosis! But better late than never. It's been most helpful to all of us.

I'm doing great on the vegan transformation. Not totally on juicing yet, and still cooking a little bit, but very soon will begin my juice fasting and go completely RAW.The good part is that it's starting to work.

The bad part of the vegan/juicing/detox is that it's starting to work. My face is breaking out. I'm so tired I can hardly keep my eyes open, but I can't sleep for shit. I'm cranky. I'm eating/drinking so many leafy greens that it affects my INR values and my Coumadin has to be adjusted weekly. It's all over the place. 

The ugly part is the pains I get in my liver, kidneys, bladder & bowels as the nutrients in the juices do their work of detoxing. Also ugly is the horrendous pain in my shoulder that causes me to cry in my sleep when I roll over on it. I didn't do anything to it, it's just fucked up. I got some Lidoderm patches to put on it, and will schedule an MRI and some physical therapy soon. Whee. More scans and more doctors.

Worst yet is the pelvic pain. My oncologist had to pull out the big guns since the vicodin, percocet, ultram, and about 5 other things aren't helping any more. He wrote me a Rx for Dilaudid to take as needed. My other option for pain control was to go on full time morphine, which would effectively shut me down. I'm not quite ready to be shut down yet. I've got shit to do! But the dilaudid shut me down the other night and I wasn't able to go to my weekly group. bah.

The Big Ugly: my CA-125 is jacked up to 1,000 from 205 two months ago.

My oncologist is still pushing more chemo and says I can change my mind any time. He is really a nice guy, and wants what (he thinks) is best for me. He strongly encouraged me to keep my appointment next week with Pinnacle Oncology to see if I qualify for any clinical trials. I promised him I would- It can't hurt to hear what they've got going on. I may be stubborn but I'm not stupid.

Maybe there is a non-cyto-toxic compound they are trying that comes in a pill form. Or new stuff that only kills cancer cells and not every other damn thing in your body. Or I can gnaw on the bark of the Chinese Happy Tree. Hey, I'm even willing to fully embrace medical marijuana. I knew there were medicinal purposes for pot! sigh.. the sacrifices I make...  Yesterday we got a 50/50 vote on Prop 203. Can you believe that? But apparently they are still counting votes so it ain't over yet. Bite me, Russell Pearce.

I'm gonna be really pissed if I die before they pass that law.