Saturday, August 22, 2009

The Dirty Pink Under-Belly

I just got home Monday from 17 days in the hospital. {Pause here for audible gasp.}

It started as "let's get this pain under control". Sounded like a vacation. OK, to back up a little...I've been having back and hip pain since last November. I had a car accident that aggravated the sciatic nerve. I did many many chiropractor visits, spinal nerve injections at the pain center, and about 13 wks of physical therapy. At some point in the middle of physical therapy, I thought I was finally turning a corner and getting better, but then it pain came back, but slightly different. I had been walking with a cane for months.

I saw my oncologist in July sometime, and he was concerned about the pain, and about my concern about the pain. He suggested a bone scan just to make sure there wasn't anything to worry about. About two days before the bone scan was scheduled, I thought I was having a kidney stone. The pain was severe enough and in the right place. I went to the ER that night to get it checked. The CT scan they did showed nothing wrong with the kidneys, and after forever, they came back in to tell me. They were probably doing paper-scissors-rock for who had to tell me. Nothing on / in the kidneys, but what looked to be possible metastasis on the back etc from prior cancer. The P.A. drew the short stick and had to tell me. He did a good job. Somehow, I guess I was expecting it, subconsciously.

I had the CT scan sent to the doctor, and he wanted to see me right after the bone scan I had scheduled for that Friday. That's when he decided to get me in and get the pain under control, and I don't know what else. My memory starts getting a little spotty here.

I went to the hospital from the doctor's office. Got checked in (what a nightmare) and settled in the room. At some point within a couple of days, I had a BIOPSY, which I do not remember planning, talking about, scheduling, having, or discussing. I have completely blocked it. Apparently it showed that the metastasis was the same cancer as my breast cancer (damn lymph node time bomb!). I have completely blocked discussing it or having it.

I remember the night that the music therapist and massage therapist came to my room, but not in chronology with a biopsy at all. I think I had asked for something to help me sleep that night. Later, the nurse came in and couldn't rouse me. Later she told me that they were able to revive me with just drugs, and didn't have to do chest compressions. My sisters say I wasn't just passed out, I was gone. There was some vomit and stuff around me, and I apparently aspirated some vomit. I was intibated for three days, unconscious mostly. They didn't know how long I'd been out when I was found so they didn't know how long I was without oxygen. The doctor used words like "If she wakes up..."

I was sent to the ICU from there. When I finally started waking up, I thought I'd been kidnapped to a foreign country and not allowed to leave. They were running a Chinese restaurant out of the front office. I remember a mean rough nurse shoving the poop sac catheter up my butt, but I must have passed out after "ouch that hurts" because I don't remember decking her. I was tortured by a nurse every morning who would ask me what year it was and then try to convince me I was wrong. I finally started asking him if he wanted to know what year I thought it was, or what year he had been telling me it was. They tried to put a pic line in near where my port tubing went in on my neck, and they didn't adequately explain it to me, so I ripped it out. I remember the pulling, but don't remember any blood or pain. Maybe I passed back out. They wanted to put one in my arm, and didn't have the patience to explain it well enough to me, so they just asked my POA if they could do it. Impatient bastards.

The night before I left the ICU, I was tired of being in the bed. No one would come when I called them to tell them that my arms and legs were nervous and jittery and driving me crazy. I yelled for a while, and then decided I was going to get up by myself and sit in the chair. I ended up not falling, but rather lowering myself to the floor as my legs wouldn't hold me. Then I had to call for someone. They had to bring in the big winch and crane to get me back up again, and then I was grounded, and they put the alarm on the bed.

Getting out of the ICU / foreign country where I was held captive was great! I was away from the room and walls that seemed so strange and odd from my dillusions. The new room was really big and seemed more normal. They moved me to telemetry (?) because they had room and because I was having some chest/cough issues from the intibation (which also cracked the front of one of my teeth). I had two catheters (I don't know the technical names, save "folley", but I call them the pee bag and the poop sac) and an IV for fluids. I was so uncomfortable with the poop sac, that I talked them in to taking it out the first or 2nd night I think. This was fine, except that now I had to use a bed pan to poop, which was very uncomfortable, and people had to wipe me ass when I was finished. (You know you really just don't care anymore when that ceases to be embarassing.) Finally Physical Therapy came to teach me how to get up and down with a walker. Oh happy day, besides the bleeding hemoroids, when I could get up and use the toilet. Ok, so I still needed help wiping my ass, but still. I drew a picture in honor. Several days later, I convinced them to remove the folley and after that, convinced them I didn't need the IV pumping pee juice into me that made me get up every two hours all night. Being completely unattached was wonderful. Getting to the restroom was still exhausting and a huge deal though. Several times, no one came to help in time and I pooped all over the place on my way to the toilet. I couldn't get back in bed very well, so for many days that was a huge ordeal, needing help back into bed and to be positioned. Ugh. I was so weak. For lack of someone saying it was no longer neccessary, I was on a liquid diet for DAYS. Pureed soup twice a day, which looked the same as what I was pooping out on the floor when I didn't make it. Finally I just couldn't eat, and finally, FINALLY I got the doctors to own up and change my diet! Then one night they sent me stew by mistake...I almost hurled, but got over it. Kinda lost my appetite after that.

I'm trying to remember things, but can't. I started feeling better after all the stuff was unhooked. The doctor decided, first, that I could move back to oncology, then changed his mind and said that as long as they didn't need the bed, I could just stay where I was. Next day I was told I was moving back to onocology. To a teeny tiny room about the size of a broom closet, where my walker wouldn't even go around the bed or fit in the bathroom. It felt like punishment, but at least...I dont' know what. I felt rather ignored after that, though I should have been better looked after back in oncology. Finally they started saying I could go home monday morning, and then everything just gets dumped on you at once. I don't even want to think about it right now. Too much to think about and deal with.

I started radiation on thursday before leaving the hospital. I also started taking Femara, orally. Between the two, I feel achy and tired. I am very achy and don't feel good every evening, after taking the Femara, and wake up achy and tired. It never goes away. I tried to pin the doctor down on friday about the prognosis, but I'm not sure I got a straight answer. I just dont' know if it's assumed that I'll get better, or assumed that I'll get worse. I don't know if his idea of setting a goal of getting back to work is just a distraction or a legitmate goal. He never did address the "or am I going to die" part of my question. I love and respect him, and I know he doesn't want to lose a patient, or fail to give someone hope, but I need to know if I am going to have to go back to work, or if I will have to deal with losing my insurance, etc.

So this metastasis is the unpublicised part, the part for which there are no parades, no pink ribbons, no hats. I think I read that 30% of "survivors" end up with more cancer. But we ruin the statistics. We totally screw that survival ratings, so I'm pretty sure they just ignore it so the numbers can look better. They've come by and took my pink hat and deribboned me. I'm no longer a survivor; I've no longer been cured. "Cured" is such a bull-shit word anyway. Seriously, no one can know if they will never get cancer again until the day they die of natural causes. 2nd time around, they dont' even use the word. My metastasis is "treatable but not curable". You have to live with it forever, until it kills you I guess. I really don't know what is going to happen with the cancer, and we still have to do a PET scan to see if any organs are involved. I think that it was probably too soon to be setting goals to be back to work, but I think maybe it made the doctor feel better.
There's no looking back and saying "I should have" or "I could have". There's only making it now, knowing what I'm dealing with and making the best. My next move is to get some cleaner answers about the prognosis and then about my insurance / disability.

This is the dirty pink under-belly; the part that exists but is not glamorous or glittery, for which no one marches or holds parades. The only pink ball caps are the ones dropped in the gutter and run over and stepped on. It's a dirtier shade of before, and it's reality for many.


by...K@ Ashcroft said...

Shelli, there are not words except, we love you and are praying for you. Your an amazing woman and I hope to have more time to get to know you better.

-Kat Ashcroft

Mary said...

Well, I for one was perhaps equally happy you were out of the ICU . . . that was freaky. I didn't like that you were there. I have to disagree with one thing. You ARE a survivor. You have a mountain in front of you, but that does not diminish the fact that you have already climbed one mountain.

Anyway, we are always here for you, and I know that Heavenly Father loves you.