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.

What a week

Wow. I can't believe it's been a week since my last post! I'm having a hard time staying awake for any length of time, being on morphine and muscle relaxers all the time- even though I still don't sleep at night. I escaped from the hospital on Wednesday after almost having a throw-down with the hospitalist and the nurse manager for the floor. That doctor pissed me off.  When he wasn't being condescending to me he was raising his voice to talk over me. You wanna see me go ballistic? Treat me like I'm an asshole who doesn't know what I'm talking about and see what happens.

That "doctor" is apparently new to the hospital group. My nurse told me that the doc hadn't even gotten a report on me before he busted into my room and told me he was sending me home right after my ureterocsopy. Um, excuse me but I just got a whopping shot of morphine 2 minutes ago, so of course my pain is minimal. The urologist has other plans for me. He also couldn't or wouldn't give me an answer on why my pelvic CT scan didn't show the gigantic tumor. He scoffed at the picture I showed him of my tumor on my previous PET scan. "When was that scan done- a year ago?" he sneered at me.  I said "NO, motherfucker- it was a MONTH ago. What is your problem? Why can't you give me a straight answer? And why has it taken 3 fucking days to get the radiologist to look at it?" By this time, my son was sitting very close to me and kind of rubbing my shoulders (actually to grab me when I went to lunge for the stupid shit doctor), and several nurses were seen huddling in the door. I guess they're not used to patients ripping into the doctor like that.  This is where the nurse manager got involved to diffuse the situation.

Anyway, suffice it to say that I survived this episode, and so did the doc. I have a follow up with the urologist tomorrow to take the stents out of my ureters. Then I see the oncologist on Wednesday to discuss my "absent" tumor, get some blood work done and maybe another scan. I also want this port out of my chest. I now have 5 new meds: morphine, muscle relaxers, ditropan-which stops my bladder from spasming, senna to keep the mail moving (which it hasn't in a week, God help me) and Flomax- which they give to old guys for prostate problems. It also relaxes my ureters or something like that, so if any more stones wanna make a break for it, hopefully they will just fall out. Ya think?

Thanksgiving was wonderful. We actually had 2, since my new sis-in-law had to work on Thursday. There was a delicious dinner here at mom's house, then a big bash at my brother's place with SIL's family included.

 My "babies"

THE baby

On a sad note- one of my support group buddies passed away last week. She wasn't very far into treatment and had only recently had surgery, but went downhill quickly from there. Complications took the life of a very beautiful, very young, and very much loved daughter and friend.  We attended a memorial service for her on Saturday. 

R.I.P. Amy. You were loved.

What the hell?

Who would believe that something the size of a raisin could fell an Amazon Girl like me?

I woke up in excruciating pain at about 2am this morning. It felt like a very large hand got ahold of my kidney and was squeezing it like a sponge. I waited a bit to see if it would go away, but 5 minutes later I was waking my mom up to take me to the hospital.

Once at the hospital it was determined that I had a rogue kidney stone trying to make it's escape. Remember how at the very beginning of my cancer journey it all started with kidney stones? The very ones that nobody ever mentioned again after discovering the pelvic masses during the CT scan. Well, hallelujah, my kidney stones are finally on the front page again.

I'm still at the hospital. I've spent all day trying to pass the fucker. I'm sloshing with morphine, toradol, flomax, IV fluids and water, and I'm gonna get some flexeril soon for my aching shoulder muscles (from being hunched in pain for hours). The urologist said if I don't pass it by morning they will perform a ureteroscopy where they stick a scope up where one ain't never been stuck before that goes all the way up the ureters, where they will blast the little bastard with a laser. Who knew they did such things? Apparently I missed the lithotripsy wagon, which is only here every two weeks. Lithotripsy is where they use ultrasonic waves (on the OUTSIDE of your body) to pulverize kidney stones into dust, making it easy to pass them. Just my luck they were here YESTERDAY. Fuck. Are they like gypsies, I wonder? The lithotripsy team? Just passing through town putting that magic wand on sufferers of ureterolithiasis? Why wasn't I notified? 

Ah, Miguel is here again. Beloved, devoted Miguel, my nurse for the day. He is very generous with the pain meds, my Miguel. Will let y'all know how the stealth scope goes tomorrow.

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.

A Call To My Peeps:

I need a boost, my friends. My oncology appointment is tomorrow to discuss PET scan results. I haven't slept in 3 days. My sister is back in the hospital undergoing tests for bowel issues- she had a colon resection 6 months ago. Now I have some weird bowel issues going on. Sympathetic symptoms, maybe? A bug? Bad oysters after my PET scan on Friday? I know, what was I thinking? (actually, I was thinking I should load up on all that raw-fishy-sushi stuff now in case I had to start chemo again and wasn't allowed to have it. My mind works in strange ways). I am STRESSED OUT. In pain. Scared. AGAIN! How many times do I have to go through this? 


So- if it wouldn't be too much, would y'all mind sending good thoughts my way? Send it in whatever way blows your skirt up- pray, rattle 'dem bones, knock on wood, rub your lucky rock, telepathy- I ain't picky. I'll take them all. Some for my sister wouldn't be bad, either. Thank you.


Lord, give me strength. Amen.



 

What's in a number?

Hmmm, where did we leave off? Oh yeah, the moving, the breakup, and the yada yada yada. I finally got the moving done. Well, let's just say all my crap is outa the apartment and partially in storage and partially here at my mom's house. My mom is having the floors redone so I'm not going to move my big stuff in here until the new carpet is in. That stuff is heavy, and I'm only moving it once (more).

The breakup is done. I swear, that was the longest breakup I've ever had, with all the moving and whatnot. We've kept it civil, we're amicable, and we'll try to stay friends. Maybe I'll get over my resentment now that I'm not depending on him for anything.

On to the yada yada yada. Yeah. I really don't want to go there, but I must. I saw my PCP last week to talk about weaning off some of my meds and to check out some pain I've been having- not just the upper abdominal thing that I think is nerve damage/scar tissue, but a new, lower, pelvic pain. I was trying to think what I had left in there that would hurt so much; my bladder? my colon? This pain has gotten progressively worse over the last month, and I'm sure moving boxes and furniture hasn't helped it much. But this pain is beyond strained muscles. And I'm actually FEELING lumpy-type things down there. My PCP said it "may" be a hernia that developed after my surgery last year. But he doesn't think so.

He's ordering a new pelvic/abdominal CT scan for me- I'll get that next week. He wrote up a referral to the new oncologist I need to see, since I have no insurance now and have to change docs. I'll see him on Thursday. He did some labwork.

My CA-125, which has been very low for a year, is now at 205. Are you ready for Round 3? Plan D? FUCK. ME.

Crab Ass Wendy Whiner

I have just had my next-to-last chemo. My CA-125 is back up to 20 from 12. I try not to get hung up on the numbers- it's still totally within the "normal" range (less than 35) but I'm not liking the spike. I have so much going on with side effects- all separate things that, by themselves, are irksome, distressing, painful or intolerable- all together are really fucking me up.

These days, everything I do (or want to do) requires deep consideration. With all the meds I'm taking, I have to be very careful. Should I take Xanax for anxiety, or narcotics for pain? Can't take 'em both, or even close to when I go to bed. Ambien or Seroquel to sleep? Ambien doesn't work for long and Seroquel is supposed to help with "sleep anxiety" and hot flashes. It's not helping. My Prozac was upped to 60mg a day to help with the hot flashes. That's a lot of Prozac. And it's not helping.

Chemo plays HELL with your GI tract, starting with your mouth. Bleeding gums, mouth sores- fuck that. Got some new mouthwash- it's called Magic Mouthwash, and the pharmacy actually had to compound it for me. It's got a LOT of Lidocaine in it, some antibiotic, antacid and something else. I have to make sure I've eaten first because I'm a total mush mouth after using it.

When it comes to eating, I have to consider what will taste the best when throw it up. Or if it's even gonna pass through. Gross, right? All my cancer/chemo buds know exactly what I'm talkin' about. Laxatives? Sure. Bring 'em on. They're not working. When I need to take a Vicodin after using the bathroom: I AM NOT HAPPY CRAPPER.

I even got some anti-nausea patches called Sancuso. Good shit, Maynard. Especially when they STICK like they're supposed to. They last for 5 days, and in combination with Zofran, Compazine and some steroids, they work great. But I've had 2 patches fall off after 1 day (yes, I put them on right- I'm not a total dipshit).

The sinus thing is driving me crazy. It's been dripping for a year since I started chemo- apparently because my nose hairs are gone, and bleeding and scabbing for about 6 months. It's not going away and feels like it's going deeper.

Thanks for lettin' me share my list of woes. Doesn't make it any better, but maybe y'all know something I don't about fixing them (besides stopping chemo and all meds). I see a lot of doctors now, but see an ENT and a GI doc in my future. Fuck.

Herbals, anyone?