Home and happy. Warm and fuzzy. or woozy. zzzzzzzzzzz
Friday, December 24
Oh, lucky me, in the hospital for Christmas. Nausea and vomiting for 3 days leads to severe dehydration, so here I sit. THIS SUCKS so much I can't even begin to describe it. I pray for good health and a wonderful Christmas for all of you. Hopefully I'll get to go home tomorrow.
Monday, December 20
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.
Wednesday, December 15
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.
Friday, December 3
Thursday, December 2
Had to go back to the hospital yesterday. Was up vomiting all night Tuesday. Haven't had a bowel movement in a week due to all the heavy doody pain meds I've been on. Hopefully something will happen soon and I can go home.