Shades Of Blue

In The Sky

2011-04-25T10:22:00.000-07:00

Hello Blogosphere,

This is Melissa, Patty's daughter. My Mom passed peacefully yesterday afternoon around 3:45pm. She has been incredibly dedicated to being open with details about her life and her dealings with cancer. I am not an expert, nor am I as intimately acquainted with everything as she was. I do not know the majority of you guys, but will do my best here.

Her last post on April 7th was made from a hospice facility. I can't remember how long she was there, but she did go home from there and my Grandma continued her care, as she had been doing. No one could ask for a better or more dedicated caretaker or Mom than my Grandma. The last few weeks were weeks of general decline in her physical health. Weight loss was dramatic. I don't know how many of you know my Mom in real life, but she is a true Amazon warrior woman. 5'11, broad shoulders, with a happy weight of about 180. She was down to about 100 pounds. For those of you who were also friends with Jayne over at Shopping Kharma, there was a picture that she had posted where her pain pump was incredibly large underneath her skin. My Mom was similarly small in the last few days. The pain was at a point that eating had become an impossibility. The last two weeks my Mom had been completely sustaining herself with Coke and Smart Water, as they were the only two things she could stomach.

As far as medical going-ons, she had the colostomy bag placed sometime in January, if memory serves. I know she wrote about it, naming it Stella :) In addition to that, another bag was connected to the PEG tube to collect stomach contents. My Mom would sit there sipping on water and would laugh as it went down her throat and then, a few seconds later, out the tube. She said in her last post that the tumors secrete their own fluids, and I believe (though again, I am not a medical professional) that this bag was also there to collect this fluid, as it was a primary cause of the overwhelming nausea. A few days ago she also had a Foley catheter placed, as getting out of bed became too difficult.

Last Tuesday, the 19th, her bed was replaced with a nursing home style bed. Getting into a position that was comfortable was becoming more difficult, and the bed allowed her to more easily get into a comfortable position. So, we're getting caught up now. If you're still reading, you're a saint! One thing I did not learn from my Mom was brevity. Mentally, we could see her becoming a little less connected to the world. She began to sleep long hours, though sleep is a word I use loosely, as it was more of a heavily-medicated rest. I don't know anything about exact dosage, but I do know that both the methadone and the dilaudid were increased by the members of her hospice team to try to keep her pain under control. Saturday night was a long one. Her anxiety up to that point had been increasingly extreme. My Mom was upset, nervous, worried. My Mom was uncomfortable, tired, in pain, and was incredibly agitated. The night was spent around her bed, with us holding her hands, stroking her hair and telling her we loved her.

Yesterday, Easter Sunday, was more peaceful. Hospice came in sometime early, in the wee hours, and she was given Haldol, a strong anti-anxiety medication, to try to help her relax and to rest. The Haldol worked, and gave her a little more peace, giving her the chance to actually rest. At that point, it was just waiting. My Grandma, her Mom, was at the head of the bed holding her hand, and myself, one of my Uncles and my Aunt were around the bed as well. We were all holding her, making sure she was comfortable. While she was sleeping we all watched her breathe and around 3:45 she took her last breath. Everything was as she wanted. It was very peaceful.

This blog has been something so important. My Mom was dedicated to sharing her life and her experiences, both as a means of release and as a documentation of her trials with cancer. The support, love and friendship that she gained from this blog were of tremendous importance to her. All of your thoughts, words, prayers and vibes have been received by her and by our family. Thank you for loving her and supporting her, for being there for her and for us all. We are all truly blessed to have known Patty in whichever way we knew her and now, she is out of pain and, I have no doubt, is already up in the sky having a party with those that passed before her.

I have been asked about donations by a few people. If anyone would like to make donations in her name, please make them to Hospice of the Valley in Phoenix, AZ.

Thank you again for all of your love and support.

Love,

Down the rabbit hole

2011-04-07T08:18:00.000-07:00

I've been in the hospice facility for the last 7 days trying to get my nausea and vomiting under control. Evidently, we've done all we can so I'm going home. We can do at home what we've done here, and I'm just sick of being here. It's taken me 3 days to get this post up, being as loopy as I am. We had to increase my pain meds again, because my pain from the nausea and vomiting is gonna do me in. The doc tells me that for as much as we are doing, it's not really going to help. Tumors themselves excrete their own fluids and hormones that cause nausea, and I have a lot of tumor activity going on in my abdomen. I haven't really eaten in weeks and I've lost so much weight.

There is a lot more on the issue of "going home". My time is getting shorter, I feel. I'm not being dramatic, I'm being real. My pain has increased, my vital signs fluctuate a lot, I have some new arrhythmia on my heart, my blood pressure is all over the place. And the fact that we had to increase my pain meds to the point that I'm so loopy I can barely get out my morning Facebook "hey, I'm alive" post- decreasing awareness of my surroundings and who is there. It's weird. I can feel it; time slipping away, me slipping away. Part of it may be from sitting in this little room at hospice. I'm lonely and bored, and we spend all damn day either medicating me, cleaning up vomit, or messing with my PEG tube. I'm tired.

My son has had all he can take. How do you say good bye? He knows my death is imminent; it's just not happened yet and the strain shows on him. He's doing terrible in school, and no wonder. Sometimes I wish it would just happen and be done with it so everyone could deal with it and get on with their lives. I hate dragging things out. I've had a lot of bad days, can you tell? They happen much more frequently than the good days. I've almost forgot what good days are like. I really miss food. Man, what I wouldn't give for a big sloppy cheeseburger. I'll quit whining now. Don't know how many more posts I have in me but when I'm lucid enough I'll post.
Love to all,

Happy Birthday To Me

2011-03-25T09:59:00.000-07:00

Well, I made it to the big 5-0. Woot! This is also my 2 year Cancer-versary. yay me.

Things have been going ok, I guess. My hospice team is absolutely wonderful, and take care of my every need. I have good days and bad days. I've cut down on my pain meds so I can think clearly, but not enough to let the pain in too deeply. That's always there.

I've been very sad about Jane's passing. It's been on my mind a lot. We never know how much time we have, or what will try to trip us up along the way. I'm just fighting to stay well. You've heard the term "she took to her bed and never left it again". On my bad days, that's what I feel like. Bad days consist of puking and sleeping all day. I've lost almost 50 lbs. in the last 3 months. My butt is completely gone, my breasts are . . . well, just not my breasts any more. Sigh... Now, I really look sick. It's hard for me to eat more than 4 bites of anything. I've started the tube feeding, but that isn't agreeing with me. I had a total puke fest yesterday after half a can of "supplement".

The good thing is that today we're all taking a road trip to San Diego! I'm so excited! My whole family and my best friend are going. Everyone is running around madly packing things and trying to make room for all my medical equipment and my drugs. It's a big load. I've been waiting for this trip for so long. I'm returning to the place of my childhood (Coronado) and sticking my feet in the surf at sunset.

So.. wish me luck on my trip, I'll try to update next week. I hope everyone is happy and having good days. Love to all-

Remembering Jayne

2011-03-08T15:20:00.000-07:00

Jayne was a beautiful, wonderful, inspirational woman who wrote a blog called Shopping Kharma. She'd been battling this fucking ovarian cancer for 10 years and it's so hard to believe she is gone. I've cried buckets of tears for her and her husband Jimmy. Jayne was so helpful to so many people. She spoke her mind, and shared a lot of her life with us. She loved her husband deeply and would write about him a lot. Her words really moved me, and she will be missed terribly. If you're the praying kind, please send some up for Jimmy and those who loved her. Goodbye, Jayne. You were so loved. Thank you for all you did for me. You are a true angel.

I loved you.

2011-03-04T19:21:00.000-07:00

Hi friends of Pateeta, it's Melissa, her daughter. My Mom is sitting next to me so I will type her words.

She had surgery on the right lung to drain fluid. It was the same that was performed on the left, the Talc pleurodesis. While the doc was in there, he did remove a tumor that had metastasized from the diaphragm. So, there WAS metastases to the lung.
She's in a lot of pain, and is having trouble breathing on the right side. She is hitting her pain button a lot, and is all tangled up in tubes and pissed off about it. She just wanted to update. She says if she gets out of here, the party is this weekend. She (and me too!) Says thank you all for your love and support.

I will update as I am asked to. Ginny, if you want to come she is on the ICU at Good Sam.

Love to all,

Back At The Ranch

2011-03-03T12:21:00.000-07:00

Also known as the hospital. The hospice Xray dude came yesterday to check out my right lung and it showed moderate pleural effusion on the right lung and small effusion on the left (which had already been fixed). Waiting for admission to get a bed for me.I'll keep you postedp

Loaded For Bear

2011-02-28T14:02:00.001-07:00

Methadone 10 mg- (liquid for oral or PEG tube) 0.7mg 3 times per day
Dilaudid 10 mg- (liquid for oral or PEG tube) 0.8mg, up to every 3 hours as needed
Mediclophan (nausea gel) apply topically 4 times a day
Lidocaine patch- 12 hours on, 12 hours off
Colace 2 tabs twice a day
Ditropan 1 tab twice a day
Warfarin 1 tab once a day
Celexa 1 tab once a day
Albuterol treatment by nebulizer- as needed 2-4 times per day
Xanax 10mg as needed for anxiety
Ambien 10mg as needed for sleep

My schedule is still a little wobbly, but it's all getting in there. If I didn't keep track of it, no one could.

I wanna talk about....

2011-02-22T13:47:00.002-07:00

HOSPICE.

I haven't talked about hospice, or much of anything lately. It's a full time job to properly medicate myself all day. But hey, I can multi-task! Right this minute I'm having an albuterol treatment in my new nebulizer. It's also taken me about a week to pull this post together.

The word "hospice" is a pretty scary word to most people. Some immediate thoughts upon hearing the word "hospice" are DEATH! DYING! KICKIN' THE BUCKET! (ok, that one was mine). But I chose hospice because treatment for my cancer was not working any more, and the cancer is spreading. I am in a totally new Place. I'm soaking up all these new feelings since I signed that one little orange paper. I'll save that for later.

I have my own hospice team. I have a doctor that makes house calls. She is amazing! I have a RN case manager, "A", who oversees all my care and stops by once or twice a week. I have another RN, "L", who covers when A is out. I have a phlebotomist, "R", that comes by and draws my blood once a week. I have a social worker, "N", who takes care of my head, and everything and everyone around me. She brings me flowers.

My hospice is a not-for-profit organization so all of my care not covered by state insurance is taken care of. I can't even begin to tell you how wonderful they all are. Just when you think there couldn't possibly be any more they could offer you, they're back with a massage therapist for my lymphedema. Their pharmacy delivers day or night. My oxygen and supplies are delivered round the clock. A couple weeks ago I said "I have a swollen ankle". An hour later there was an ultrasound tech at my house checking me for DVT.

They really listen to me. They are all about me and my pain and my feelings and my children and our comfort. I have not had a bad experience or weird vibe from anyone I've met through hospice. God, what did I do to deserve this kind of loving, kind, compassionate care? I am blessed beyond belief.

LOVE

Look quick! She's lucid!

2011-02-16T17:25:00.000-07:00

Hey, sports fans! As usual, I'm heavily medicated so I'm unsure as to what will come rolling out of my mouth (or fingertips, I should say.) And my fingertips are all cracked and bleeding again- reaction to all the meds? Maybe, but they hurt like big dogs, and have put a serious damper on doing things like typing, texting, buttoning buttons, and all that other mundane things you use your fingers for.

Anyway- I am back at home again. They cut me loose yesterday after pulling the chest tube. Remember how I was getting my panties in a wad over the ventilator thing? When I woke up from the surgery (which only took about an hour), I wasn't even ON a vent. Apparently, after about an hour in the recovery room, my poor little abused, flooded, twice-drained, and newly powdered lung was inflating on its own and they pulled the tube before I even woke up. How's THAT for shits and giggles? Unreal.

So now I'm perched on my very own cushy bed (minus the awesome little raise-the-head feature like in the hospital) and updating y'all. I'm pretty sore, having been punctured by chest tubes 3 times in a week, but I'm HERE. I did develop some edema in my feets and legs, and am wearing some TED hose to the knee. My legs now look like Brunhilde the shot-putter's legs. No offense to Brunhilde or shot-putters, but my legs are one of my best features. (like modesty).

One of my new meds is LASIX. A pretty powerful diuretic (?) that has me up scrambling for the new commode that sits so attractively next to my bed. By the new oxygen pump. I almost feel like I could open up my own durable medical equipment store with all the new stuff I have. I'm waaaaaay whacked out with Methadone, dilaudid, still on bladder meds, now diuretics, stuff to eat, sleep, shit, you name it- I've got it.

I am one lucky girl and there is definitely someone way up there looking out for me. Him, plus my family, friends, blogger buds, FB buds, neighbors, and about another 10,000 people known and unknown to me. I am a BELIEVER in the power of positive thought, prayer and love. Thank you all so much for pulling me (once again) out of the pit and holding me up. I love you all so much.

Last Ditch Surgery

2011-02-11T08:50:00.000-07:00

So it's 7:45 here in hospital land. Things are starting to move, however slowly.and I'm typing on my phone again so this will take awhile.

My surgery is scheduled at 1. The plan is to get some kind of powder into the pleural space so it can dry it up and seal it. Doesn't sound too difficult. The thing that bothers me is that I will be on a ventilator for a few days. I know that this is part of the treatment and recovery so I'm not wiggin out over it. It's the possibility of a longer intubation that is on my mind. A one to two week intubation was brought up, which goes against my DNR wishes.

There has been much discussion over this. I am giving it a 14 day maximum limit on the vent. My family will keep you all updated.
Love,

Not Much Time

2011-02-10T10:52:00.000-07:00

Hi guys- got lots to say but not much time to say it all. I'm pretty heavily medicated so my lucid moments are becoming fewer and further between. I am on home hospice now but am posting from the hospital.

Anyway, lots of new stuff has happened. I finally got a total bowel obstruction and am the proud owner of a colostomy bag. My stoma is named Stella. I have a PEG tube that I was only using for my liquid methadone and dilaudid. I am now on oxygen, on 4 Litres. I have a big pump type thing that lives in my closet because it's noisy. It has a bubbler (for moisture) and there is always water in the line. I have a portable tank that's on the little trailer-pulley thing that just makes me want to go to the casino, ya know? There are always those little old ladies in there playing the slots, dragging their oxygen tubes and puffing on their cigarettes. gross!

What I'm working on now is fluid in my lungs. I came in to the hospital last week after hospice sent a home x-ray dude to the house because I was getting short of breath. The x-ray showed that I had 2 litres of fluid on my left lung. I went through a procedure where a chest tube was stabbed through my ribs and hooked up to a pump/ container thing to collect it. On Sunday, the drainage stopped so they took out the tube and sent me home. The x-ray dude came back on Tuesday and lo and behold, I had another 2 litres of fluid on the same lung. Back to the hospital for the same procedure- to drain the lung.

I've just spoken with the surgeon/pulmonologist/ hospice docs, and God's Army, and we've decided to do a procedure tomorrow called a Talc Pleuro-desis. You can look it up cuz I'm too exhausted to.

Things are getting close, my friends. I can feel it. I have signed a DNR (do not resuscitate) at my last hospital visit (with the bowel obstruction. I don't know a whole lot right now, except things are escalating- my body giving out, a lot of things. It's a weird feeling. I know this post is disjointed, rambling, whatever, but that's how i feel most of the time. My daughter will update for me when the time comes.

I just want to say to you all; I really love you. You've all helped me so much, in getting through my treatments, procedures, recoveries, etc. I am so grateful to you. I do know that God can step in and change things at any time, but I'm also a realist. I'm not even gonna proofread this before I hit send cuz otherwise I'd be spending all day on it.

If you know me on Facebook, there's where you get the "morning update", meaning, if I say good morning- it means that I woke up.

I don't know where else to go with this, but here's the skinny. Say a prayer for my family, my children, my friends, and others who love me, will you? I think they need it more than I do.
I love you

Oh, Daria

2011-01-22T21:53:00.000-07:00

Our blogging community has lost another beautiful soul. Daria from Living With Cancer passed away today. Daria was so helpful to me and others facing this cruel disease. She will be sorely missed. Please, say a prayer for Daria and those who loved her.

A Little Time

2011-01-19T13:48:00.000-07:00

Hi guys-
It's gonna take me a little time to pull my thoughts together to be able to update all that's happened in these last crazy couple of weeks. But the quickie update now is that I'm home from the hospice facility. And driving my mom crazy for not letting her "do" everything for me. Sorry, Mom! Love you!

And all of you- thanks for sticking my me.
Love,

To Hell And Back

2011-01-14T20:35:00.000-07:00

This will be brief, i dont have my laptop and im exhausted.

Was released from the hospital today after a 13 day stay. Major complications occurred, and i and everyone else thought I was going to die yesterday. Transferred to hospice facility today to get a home plan started on Monday. That's all I've got for now but i am so grateful for my loving family, friends and God for pulling me through a very dark place and letting me have another beautiful day on this earth.

Like A Lead Balloon

2011-01-07T07:43:00.000-07:00

That's what my stomach feels like. I had my upper GI series yesterday where I glugged down at least a litre of barium. I don't know how I did it, only being able to take small sips of anything, but I was determined to NOT get the NG tube down my nose. It took over 4 hours for this test. I'm sure it would've been quicker, but when your bowels aren't working properly then they can't push the barium through. About 3 hours into the test they told me to lie on my stomach to get another view. It had been over 4 hours since my last pain and nausea meds so I was hurting pretty badly by then, but you'd have thought they were murdering me in there by the tortured screams that came from within. The radiologist called for a nurse to dose me with more pain meds so we could finish the test, and my momma came down from my room where she'd been waiting for hours. They let her come in and hold my hand and calm me down. Thank God for my momma.

It's been about 18 hours since I drank the barium and it's still not moving anywhere. Last night I vomited, but only bile. I still can't have a bowel movement. This morning I got a new wristband with my blood type and other cryptic information. Surgery today is a definite possibility. I spoke with the GI guy, the surgeons, the gyn/onc and the chaplain. If they decide to go in to check out/resolve the bowel issue, it's very possible I'll leave here with a shiny new colostomy bag, and maybe a PEG tube for feeding.

It distresses me how fast this is happening. I mean one minute I feel fine, and the next minute I'm in the fucking hospital AGAIN for something else. My kid came home on Sunday night and I've barely been able to see him since then, except here at the hospital when my mom brings him up after school or after dinner. I know all this is freaking him out. My daughter lives 3 hours away without a dependable car so she's not able to be here right now.

As far as surgery goes, I'm all for it if it will resolve these bowel issues, but that's it. I know it will not help my cancer. Hopefully, I will be considered a good surgical candidate for open abdominal surgery again. I always had a quick recovery before, without post-op complications. But things are different now. I'm on blood thinners, my cancer has spread, and I am just not the Amazon Girl I used to be.

One of the surgical residents just came in to talk to me. He told me they'd be sending down a team to start marking me for possible PEG tube and/or ~~shit bag~~ colostomy placement. Looks like I may be having surgery today, after all. Pray for me, please.

All Out Mutiny

2011-01-04T09:50:00.000-07:00

Someone, please make it stop. I was admitted to the hospital again yesterday with unresolved abdominal pain, nausea and vomiting. I'm waiting on consults from a G.I., another GYN/onc, and a surgeon. My CT scan yesterday revealed that I now have a few small bona-fide obstructions, in different places. I can actually point to the exact places on my belly where the problems are.
My clinical trial is now on hold, until and unless I can get these mutinous bowels moving.

AARRGG! Fuck off, you scabrous dogs! Belay that guff and GIMME BACK MY BELLY!

Passing Me By

2011-01-01T19:32:00.002-07:00

Hello, my friends! I've been down and out for awhile so I am not caught up on everyone yet, but I hope you all had a safe, healthy and happy holiday.

Christmas passed me by this year, as I argued yet again with hospital dietary that I am a VEGAN, and to stop sending me chicken dinners and milk. I finally had to surrender. The first solid food I had was strained cream of chicken soup on Sunday night. Hey, it was Christmas. And it was delicious. I came home from the hospital on Monday, still blurry but feeling better. I actually felt great on Tuesday and Wednesday- (hurry! look! it's Normal Girl!) God, what a feeling that was. My mom and I ate like kings as a celebration. (bad move)

I hardly know where I've been since Thursday morning. My bowels locked up on me again, I couldn't force down more than a few sips of water at a time, and I've been sleeping so much. To top it off, I ran out of morphine. I had (fuzzily) thought earlier in the week that I'd probably be having appointments this week and could get my refills then, but somehow I fell down the rabbit hole again and it got overlooked. I tried calling 5 different doctors on Friday but everyone was already gone for the holiday weekend. Hey! What about me?

I finally got a lucid moment. I'm trying to hunker down for these next couple days and double up on the dilaudid. I'm taking my laxatives and softeners and milk of magnesia and enemas and trying to sip on the miserable crap that passes for nutritional supplements. As you can see, I am desperately trying to avoid going to the hospital again. My kid gets back home tomorrow and starts school on Monday.

I got preliminary stats on my PET scan- there is new stuff showing up in the abdominal/navel area. I swear, I felt those growing. One of my oncologists said if we can't get my bowels in order then I can't do the clinical trial, and/or I may have to have bowel surgery first or instead. Last week I transitioned from the coumadin (pill) to the lovenox injections for my blood thinner. I am not thrilled about this at all but I'm supposed to be off coumadin for 12 days before I can start the clinical trial. This Monday will be the 13th day, so I'm ready. I really gotta get my shit together. Too much is passing me by.

2010-12-27T20:14:00.000-07:00

Home and happy. Warm and fuzzy. or woozy. zzzzzzzzzzz

Stuck

2010-12-24T21:51:00.000-07:00

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.

Rarin' to go

2010-12-20T14:58:00.000-07:00

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

2010-12-15T16:49:00.001-07:00

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.

Home, sweet home

2010-12-03T20:09:00.001-07:00

I made it home without exploding. But I gotta stay reeeeal close, if you know what I mean. I'm gonna hit the sack. There's just no sleeping at the hospital.
Sweet dreams.

I'm just full of it

2010-12-02T13:08:00.002-07:00

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.

What a week

2010-11-29T19:21:00.002-07:00

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?

2010-11-22T19:14:00.000-07:00

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.