Sunday, February 24, 2013

MRI Madness & Hospital Hell

Hopefully I am writing far enough out from events not to sob at the retelling, not so far out that I've forgotten all the details.

In our last episode, I was scheduled to see the orthopedic surgeon and have an MRI on Monday, two weeks ago tomorrow, if I can believe it. The surgeon was personable enough, leaning toward charismatic. At the office I had an X-ray of the left leg. 

FYI, fat shows in X-rays. The rolls looked to be those of the Michelin Man. Not exaggerating.

The bone looked innocuous enough, as cancer cells on an X-ray don't sport devil horns, but he pointed out the area that was cancer and said it had "moth-eaten" properties. Definitely a candidate for The Rod. The surgery coordinator would set things in motion and call me.

Off to the MRI. I am walking gingerly with the walker, trying to keep as much weight as possible off the leg, as per instruction, and tired already after the exam room at the surgeon's office turned out to be the furthest from the front door possible, down a long hallway.The walk at the imaging center was too far as well. And apparently, regular walkers are not allowed in the MRI room. I guess they might fly through the air and stick to the machine. They actually had me try to walk from the door to the table, with support from two techs.I was stressed about fitting, and about whether or not my port would be used for the contrast. Although I was told by the scheduler that the RN would indeed be available, when I arrived the techs told me that another procedure had been added in and called the RN away from me. They didn't know if she would be done in time there to access my port mid-MRI. 

I did fit, barely, though more smoothly than I recalled from my last MRI. I had to go head-first and be completely squashed/immobilized. I did pretty well though, and thanks to Ativan, did not freak out. My arms were pinned to my body in a way that cut off all circulation to my hands and they were rendered completely numb and useless. There was also a spot where my fat thigh was against the wall containing the hot magnet, and I was sure it was going to leave a burn mark. It was like a game of chicken to see who could hold their hand over a candle the longest. I made it to to the Add Contrast portion of the recipe, and was thrilled to see the familiar face of Maria, the RN, as I emerged from my electromagnetic cocoon, ready to bypass the drama of the vein search and access that port!

MRI finished, hobbled out door, down the long hallway with my walker, and sat to rest from that in the lobby. As I rested, the tech came rushing out, looking for me frantically. The final scan 2 sections had not been properly aligned and they needed me back in the tube. Wholly Freakin' Crap. It was a good thing I was still medicated. Back down the long friggin' hallway, back across the No-Walker Zone and back into the tube for more thigh burning and extremity numbing. This time, as I'm carefully getting ready to dismount, the brilliant idea sparks in the tech's cerebral processor to get the MRI-safe Wheelchair and BRING IT INTO THE ROOM...MRI-SAFE...WHEEL CHAIR...and wheel me out of the room, and back down the long hall, and now that they realize how stupid it was to have me hobbling and hopping about, wheel me all the way out to the car.

I'm so exhausted by the retelling of this,  I need a break.


Chatting up senior citizens in the hall was exhausting too! Back to the computer...

The surgeon wanted me in the hospital a day early for "testing". Now that it's over I still don't understand his reasoning. The hospital called when I bed was available on Tuesday. We rushed on down, having been assured that they had all my info by the surgical coordinator, and felt like no one in admitting had access to any of that illusive info. This was a theme that would carry throughout the day and into the next.

The room they took me to was quite nice, and I was encouraged by the height of toilet. It was apparently one of the rooms that had been re-done. So we sat. Sat in that room all day. No info showed up in the computer at all...nothing on me from the past stays, nothing. This new "everything is accessible in the computer" thing is bull crap. When I'm feeling better, I will gripe to the hospital more about that. My profile had to be built from the bottom up, and I was not happy about that. 

And we waited. No testing. Vitals. That doesn't count as testing. When I saw the surgeon, I asked why I was here. Must have chest X-ray. That never happened. In fact, I don't think the blood work even happened until the morning of the surgery. I don't really remember sleeping there that night. I remember the next day the bumbling attempts of two RNs to access my port. They got it in but not well; poor blood return for two days until another RN did a Draino flush on it.

Still no chest X-ray. Apparently it wasn't so critical that we couldn't do surgery without it. I don't think I remember the pre-op drugs or anything. Probably this retro-active memory loss is from waking up in such 


Wholly Mother of Pearl Fracking Son of a Mother PAIN! SHIT! (had to be said)

I don't even know how to explain the next five days without swear words. And crying. And yelling. And screaming. I guess this is the worst pain I've ever had over the course of days. No bedpans...they want you up. I wanted to just pee myself. It was horrible. I wish I couldn't remember this part either. It took three people to get me out of the bed and onto the bedside commode, and it took about an hour and a half, round trip. Some of the nurses and aides were great. Patient, compassionate, helpful. Some made me wonder how they managed to graduate with a degree at all. 

Oh did I mention that I did not go back to the same nice room after surgery? Nope, general surgery, crappy small old room with a miniature toilet. I was not happy about that. Why did I come a day early and do nothing and not at least hold the room?

I have four incisions, three of them pretty small and some serious bruising. And apparently there was a fracture as the surgeon placed the rod. I envision it crumbling in his hand. I'll get more info when I see him again in a week with a clearer mind.

On Friday, I think it was, a Physical Therapist came and tortured me to the point of screaming at the top of my lungs. He rushed me, was arrogant and he hurt me needlessly. I was so pissed off. The next day, the nurse told me PT was in the hall and I was probably next. I asked if it was the guy from the previous day, and described him. It was. I told the nurse I did not want that man ever touching me again, that he had hurt me needlessly, told me "we didn't have time for this" when I objected to being rushed. The nurse told a PT supervisor. I never saw PT again. I hope that guy got in trouble. He was an ASS. I might address him again with the hospital, depending on how faded my memory is when I get out of here.

I was in there five days. Six if you count the stupid pre-op day of purposelessness. Five days and still in horrible pain and not able to do anything.

It was pain and long toileting events and yelling and crying and more and more pain. On the weekend, they told me I might need to transfer to a rehab facility if I wasn't well enough to go home. By Sunday, the toileting ordeal was down to about 45 minutes from the hour and a half, but there was no way in hell I could go home. Sunday night I said goodbye to IV pain drugs and was whisked out of there on a transport gurney and brought to the rehab place. 

It doesn't get much better for a few days. I think the theme to remember here is PAIN. Helplessness and PAIN. Yelling in PAIN. Crying in frustration and PAIN. 

NEXT TIME...The Rehab place in which I am the youngest patient by about 30 yrs.

Friday, February 8, 2013

Does twice a pattern make?

This week I had  routine follow-up visit with my radiation oncologist. I had radiation early last year to some spine and left illiac wing, and she has continued regular follow-up visits. We talked about my pain in my leg, where it came from, etc, and settled on it being sciatica, and she thought it was a great idea to do  physical therapy.

After I left, she looked at my films from my PET in December. At the actual SCAN on the computer, not just reading the report. She would have looked at them before she saw me, but I didn't know I should give them heads up on that, didn't know she would look at the actual scan. It's probably better that she looked at it after we talked about my pain, etc.

She called (personally) me a couple of hours after I saw her, after looking at the scans, and said she didn't like the looks of one of the bones in lumbar area and wanted to evaluate it in relation to the spinal cord, so she ordered an MRI.

That was Wednesday.

Yesterday morning, Thursday, she called me back AGAIN, personally again, which kind of freaked me out from the get-go. She said my description of my pain (that it was nearly constant, at rest even, was never really gone) was sticking in her mind so she went back and looked at the PET again. She looked outward from just the areas that she had treated before, and a spot on my femur jumped out at her, lit up. Not miss-able if one actually looked at the entire scan.

She called the radiologist who read the scan\made the report in December and had him look again.

Now, if anyone remembers, I felt that the report from December was lacking. It was like he got to the spot where I had vertebroplasty and got distracted...mentioned nothing from there down. I had mentioned this to Dr P, and to Dr O, and to my PCP/PA. Dr P and Dr O said they were going to request a re-look. My PCP/PA called him and asked him about that, and he came back with that all was fine in the pelvic area, no change, that's why he hadn't mentioned the area, no addendum needed.

So now my Radiation Oncologist calls him (and I can only hope she said, uh, you missed something obvious; did you even look at the femur?) and has him look again.

He is making an addendum to the report to include the findings on my femur.

She (Dr Z) said the area is on my upper femur near my groin area, and that it shows activity enough that the bone looks weakened. She said it is at risk of a fracture or break. She called an "orthopedic surgeon friend" of hers and he looked at it also, and they agreed that I should have a rod placed in the leg. If it breaks, she said, with the cancer activity, it would be nearly impossible to mend well. She said the rod is a simple, short surgery, with small incisions. She said he could see me on Monday, and had an opening for surgery on Tuesday.

Wholly Cow!

I asked which hospital, she said probably there (where she is) at Dessert. I said oh, I hate that hospital. She laughed and said that's where she is! I said her department I love, and they are the only thing I love about that hosp. She said talk to the orthopedic surgeon. I don't know if I have to stay overnight, or how long the recovery is or anything.

I guess as long as he promises me that I don't have to be in the oncology ward, where most of them hate me and I hate most of them, and that the surgery won't be in the Interventional Radiology dungeon/basement/spare storage room where my vertebroplasty was done, and if I get plenty of good drugs going in, and not at the freaking last minute, I could be okay with it, if that's where his opening is.

Dr Z said it's not an emergency situation or she'd have had me go to the ER, but it is something to be done sooner than later, sooner than soon even. So if the surgeon's opening is at that hospital, I guess I will go with it, after extracting promises from him, of course.

SO, the orthopedic surgeon's office called this morning and scheduled me for Monday morning at 7:45 A.M. to see the doctor.

I don't even get up to use the bathroom that early anymore; 

this is going to be rough. But here's the cool thing; the surgeon, we'll call him Dr M (I skipped over "N" in my backward physician alphabet), his first name is awesome. It's the same as Dr Cooper on the Big Bang Theory. He's also  young, about the age of Dr P, I would guess. I like young doctors; they haven't had as much time to get arrogant or grumpy. I think he works a lot with sports medicine orthopedic stuff, so maybe he is not like most surgeons, i.e. no people skills.

I was a little freaked out yesterday when I talked to Dr Z. It was a surprise, for one thing; surgery in few days! But I think my tears had to do with the fact that I had been complaining about my leg pain since before the PET scan (to both Dr P and my PCP/PA), AND I had mentioned the lacking and seemingly distracted PET report to everyone since then. And at least one of them called the reading radiologist, and until Dr Z actually looked at the scan and called him on it, he stuck by the original report.

I feel vindicated and angry at the same time.

I told Dr Z that she is so awesome. She not only looked at the actual scan, but went back and looked again when something still didn't sit right with her. I feel like I am finally settling in with a "team", and I finally can feel secure that someone is really looking at things. I really like that she doesn't depend on the written report from someone else.

As far as the hospital goes...if anyone recalls my nightmare experience in the oncology ward last was IN FEBRUARY! I don't like this emergent pattern. Yes, two in a row is an emergent pattern. I was thinking, in December, when I was choosing a Medicare plan, that I really hoped I didn't need to be hospitalized in 2013, but in my situation, hope was really against the odds, and better to plan (insurance wise) it as a possibility.

Last February was really a nightmare. I pieced together blog posts about it from texts and Facebook messages sent during my stay, but now I have the mobile Blogger app, so I am set for on-the-spot reporting. Seriously, NO oncology ward.

Here's the plan so far:

Monday 7:45 AM - orthopedic surgeon office visit
Monday 10:20 AM - lumbar MRI

Oh, on the subject of the MRI, I don't know if the RN will be there and be able to use my port. I am going to suck it up if she is not because this needs to be done. Also, I have gained a few pounds since my last MRI and I am honestly worried about fitting in the tube. I will wear the tightest spandex I have and hope for the best. Think sucked-in skinny thoughts for me on Monday.

Stay tuned...

Wednesday, February 6, 2013

We Miss You, Rachel

The Cancer Culture Chronicles was one of the first blogs I started following after my MBC dx. Rachel had a way of expressing what was in my heart, and made it okay for me to feel it, too; and to feel it out loud.

Fellow bloggers who knew her well have expressed their love and grief today, on the first anniversary of Rachel's death.

I hope Rachel's family feels the outpouring of love today. Rest well, Rachel. 

Sunday, February 3, 2013

Darkness & Isolation

I feel I am sinking into a dark and isolated place.

I feel depression's icy fingers around my throat.

I see that I am also feeling very dramatic. I am depressed, however, and feel the need to unload it on you five.

I thought I was over being forced to change oncologists, but I've shed some tears again the past couple of days over it. He wasn't perfect. His office was FAR from perfect. But he knew me, and I knew him. I knew that I could push back on things I didn't want to do, and that it was okay to cry in front of him. He knew I could cry and laugh at the same time, and he knew how scary my entrance into the metastatic world was back in 2009 with the whole hospital/almost dying thing. He knew my file because he is the one who wrote it.

I woke up Friday morning in such pain. I hadn't slept but about 3 hrs the night before, so that, coupled with the pain, was more than I could push through to get dressed and drive across town to have my blood drawn. So I called in tears to cancel. I'm not getting any warm fuzzies from the front desk at the new office, and I didn't have the presence of mind to ask that the nurse call me back about rescheduling. Insomnia/lack of sleep are the fastest route to "over-the-edge" for me. 
I would cave so quickly in the MI-5 (Spooks) torture scenario involving sleep deprivation. I'd turn into a raging, sobbing lunatic, and they'd either shoot me or chuck me off  a cliff themselves.
So I've only so far had one visit to this new oncology office. Part of me fears it is too good to be true.
Maybe I watch too many movies, but it feels like one of those scenarios where something seems really good going in, but once you've committed, you find out they expect you to kill babies and worship the devil.
Okay, I definitely watch too many movies. But think back to school days. It's like you've been at the same school your whole life. You start high school with the same people. You know the grounds, you know the routine, you know where to sit at lunch. Then your parents up and move and force you to start over, with no warning, in a brand new school, new school district, new town. New friends, new teachers, new administrators, new policies.

I feel adrift, still floating in the unfamiliar.

And something has got to give with this pain. Time to stop watching it, time to stop down-playing it, time to stop avoiding scans, and time for one of my doctors to take the reins and figure it the hell out. I meant not to let myself get to this point again. Last time I gritted my teeth until it became unbearable, I ended up in the hospital/torture chamber/hell that made it even worse.

I have a follow-up with the radiation oncologist on Wednesday. Same time of day as the church meeting I couldn't get up and dressed for today. Maybe I'll go to bed with my clothes on, so I can just get up and go. I don't know why I need this follow-up with her. It's been six months since the last one. Almost a year since my last radiation treatment. And seriously, I should probably go in having just had scans. I did have a PET in December, but it feels like there have been changes. Maybe the problems need an MRI to show up.

I feel  like no one wants to be my go-to for the non-cancerous, but probably caused by the cancer, problems that I have with my spine and hips. I feel like I need to bring another specialist into the mix, because my current specialists aren't broad enough, and my PCP is too broad. What is a doctor who specializes in bones and spines and hips? I know there are orthopedic surgeons, but I don't need surgery. Is that who I need? Are they just orthopedists, too, and not solely surgeons?

And don't they spell it differently in Great Britain? Orthopaedic?

Back to my dark place of gloomy isolation, which was really my reason for logging on this morning. When I was working, I saw people every day. I had a core group of people who were my micro-society. I actually used to have some friends too, for actual socializing. Since the diagnosis of Stage IV, since I've stopped working, since I have cancer that will kill me and attitude to go with it, I have no people. My daily micro-society is gone. Going out for fun times is over. Getting invited out for fun times is over. My world is reduced to my immediate extended family, whom I rarely see, and who almost never come to my house, my son, who lives with me, my cat, one neighbor to whom I speak, 1 friend who visits, and church.

My Ward (i.e. church congregation) is my entire social and societal world, in that they are the only group of more than 2 people I see on a regular basis. This pain has made it difficult for me to get to meetings. Between that and not wanting to risk the flu with my slightly suppressed blood counts, I didn't make it out from Christmas until last week, and then again today I did not make it. Getting dressed and ready by myself is difficult, because getting from one end of the bedroom to the other is difficult, and that is not all that is entailed in getting up, dressed and ready to leave the house. Last week when I went, I sat out in the foyer and only stayed for the main worship service, avoiding crowds, small rooms and potential virus-carriers.

Don't you just hate it when the point of a blog is clearly in your mind as you use the bathroom and get dressed, but when you get to the computer and start typing, it somehow gets lost in the whining and complaining?

I think part of my point is that missing church is contributing to my feelings of isolation of late.

I don't know why this definite depression (not just the lurking, simmering, always just below the surface depression of usual) has reared it's head. It seems to come with difficulty with sleep and an increase in RLS symptoms. I take the only antidepressant we found that did NOT aggravate the RLS, so upping the dose is out of the question, as is changing or adding to.

 So what were my points? I'm depressed & my pain is worse. I have a new oncologist who seems nice,

but all is not back in the groove.