Fell for that line again!

Pieced together from texts and instant messages. I hope to some commentary and final results soon.

Feb 24 I'm going into the hospital, so they can find what is going to work for this pain and potentially do the cement in the fracture thing. Sitting here in the room, the sent me straight up from the Dr's office and mom went down to register me in. Brad is here with me. I am nauseous and dizzy and tired. I guess after mom checks me in they'll come IV me, and Betsy at Polowy's promised they could use my port. I'd better not get any arguement.

In the hospital for pain. So far it's been an expensive viewing of American Idol and a ho-hum dinner. Seriously, I've been here seven hours already and all I've gotten so far is uncomfortable!

Still waiting for someone to get on this...before I start taking my own meds out of my purse. I just sent my mom and Brad home because they were both making me cranky. I'm glad my mom had driven me today, since I ended up here.

Used the port...hooked me up to fluids. She said they were going to do IV meds at 9:00, but I don't know what it's going to be.

They have better beds than they had two years ago..I think I'll sleep well tonight!

Fially she came in with meds...really? I came here for more of the same as what I was taking at home? I questioned and asked again and came back with Demorol. I am feeling it in my ribs and chest, and I stopped crying. Still pain on a sharp breath, right side, and still hips, lower back and left illiac wing. It's circling the pain. And the bed is not as comfy as when I checked in. Did someone switch it out while I was in the bathroom?

Feb 24 Pain. Pain is going on. And apparently I may have been misled about can be done here, inpatient, for the vertebral fracture, and more than half my decision to be admitted was based on the idea that it could be more quickly done inpatient than to wait for an appt outpatient. So now I'm pissed. I can't get to sleep for the pain that he thought could be handled better here. I tried to turn over, which made me need to pee, getting up for which made me hurt even more and decide not to take the up and down from the toilet pain. So I struggled back into bed and still need to pee. Worse. Sorry you asked? I'll have to combine all my message bitching into one big blog bitch.

I would not be in this much pain at home. They are not giving me as much as he told me I could take at home. In fact she just gave me HALF what he has said I could take, and my next dose of the new wonder pharmaceutical which didn't help much isn't for THREE more hours.

And during my crying jag / aborted bathroom trip, as the aide whose English I can barely understand was fetching my nurse, I swear I heard something to the effect of "I'm so sick of" and "every time". So now I'm afraid that the nurse who I thought was really nice is losing patience with me. But I didn't have two of my regular bedtime meds that help me sleep and that I'm sure she wrote down earlier and this would be a lot better if I could fall asleep.

And I might be falling out of patient love with my doctor. My appt with him this afternoon was rather cut short by the idea of getting admitted to sort this out, and I know he was in hosp this evening - nurse told me he would surely come by - and he did not. He talked me in to coming in and then doesnt stop by my room to finish our discussion?

I wouldn't be crying so much if they'd given me the Restoril that I normally take at bedtime, instead of worrying that my stupid blood potassium was low and giving me THAT.

This bed is not nearly as comfortable as it first seemed 8 hours ago when I proclaimed it superior and announced my anticipation of a good night's aleep.

And I really do need to pee. And I want to go home. I can sleep in pain far more economically at home.

Feb 25 I'm trying to make them let me go home. They're all making a huge deal, stalling with excuses and making me feel like I'm being held prisoner and threatened getting the discharge will take a long time, and how the insurance can refuse to pay if I don't stay as long as they want me to. What time did you say you were coming? I really need an advocate.

Afterword: they did not let me go home and the person coming did not help advocate for it. I actually ended up being there until dinnertime on Feb 27. More to come. Still recovering.

Helpless

I'm lying here on my bed, still showered up wet and in my towell, but wondering if I can make it out of the bed again. Mom coming at noon to pick me up for 12:30 doctor, and I can't call her to come early and help me dress because she has exercise in the mornings with the residents at the care center where her deceased mother no longer lives.

If I make it out of bed without falling or breaking in half, I then need to get dressed. Underwear and pants have become impossible without assistance. I guess the alternative is a skirt with nothing under.  Shabby Chic Commando. The appeal is growing.

Well, since I'm stuck here in the bed for the foreseeable short term, I may as well take a nap until the phone alarm rings. Luckily I got up early and showered before the DS left for class.

If my whining has somehow not conveyed, I am in increasing pain. I fear the doctor will want me in hospital but I also fear no immediate help.

Update: I asked and mom is coming early!!

Immobulus!

I was doing so well yesterday. I had a struggle getting dressed, but my good friend K was picking me up for lunch with our good friend M, so I was determined not to give up.  Getting into K's van was a bit of a struggle, but we made it work, thanks to K's close curb parking abilities.  When we sat in the restaurant, I was afraid it was going to be a very short meal, but a table change later, I was able to achieve relative comfort. I thought I might be on to something with the combo and level of pain meds and ibuprofen I had before coming. Great lunch, catching up with M, who recently moved from our area. Getting back in the van was less painful, and I came home to a wondrous sight: weeds being uninvited to live in my front yard!

J's daughter, A, who, along with her sister who sang to me the night before, had organized a crew of young women to de-weed my front yard!  There, working hard were J, her two daughters, A and B, my other friend S, her two daughters, B and H, and four other hard working young women, along with my son. My sister came by just as we drove up to return my wheelchair, so I decided to give it a try, and sat in it on the porch and watched the work and chatted with my friends.

The wheelchair turned out to be quite comfortable, which is good, since my plan is to take it to my doctor's appt Thursday, at which office I've never spent less than 2 hrs, because I am sure I wouldn't last 10 minutes in those standard lobby chairs. I actually felt pretty good after my sit, especially considering I haven't sat for more than 5 minutes at a stretch in a month prior to this day!

When the crew wrapped up and headed out (the yard looks great, and I no longer have "worse yard on the block", at least for the time being! Thank you A and crew!), I went in for a lie down on the couch.

I lay for a while, petting cats and watching SG1 with my son, then attempted to rise to use the restroom. My body was having none of that.

Pain, muscles seizing, Charlie Horses, extreme pain, crying out and even with help barely made it to the upright and on my feet position.

It hasn't got much better since. It feels like I may have torn a muscle on my ribs where it was already hurting. My lower back and hips are worse than ever, making routine personal hygiene (think toilet paper) nearly impossible. I have given up the sofa, which was supposed to be my savior, and getting in and out, especially out, of bed is excruciating and almost impossible.

Ironically, once I am upright, walking, though aided, is relatively pain-free! My middle just does not want to bend at all. I managed to get out of bed this morning, and sit for a while in the wheelchair.  Then, knowing that I have a blood draw scheduled this afternoon, attempted a shower with the shower chair that was recently lent me. That didn't go so well. Turns out the chair is too big for my shower with me in at the same time. All I managed to accomplish was wetting my hair and knocking the shower door off its tracks. Now I'm back in bed in my towel, knowing that it's going to be horrific getting up and hoping Brad gets home from class in time to help me get to my blood draw.

The body is worse and worse by the day. Pain has a strong foothold and shows no sign of retreat. Just when I think it can't get worse, it does. I'm feeling at the end of my rope, and nothing with which to tie the proverbial hanging-on knot.

The Sweetest Get Well Card

"I hope you get better Shelli.
I wish there was no such thing as cancer.
Because then you would not be sick and you(r) spine would not be broken.
I will pray for you Shelli."
                             -Robbie (age 9)

This brought tears to my eyes as I read it aloud to his mother and sisters. Robbie, who has Asperger's Syndrome and doesn't draw, nevertheless wrote this all on his own, by himself, and drew a cat on the front for me. Such insight and a tender heart in such a young boy, echoing the sentiments of us all in wishing there was no such thing as cancer!

Wholly effin' #$&%*!!!

Woke up this morning in so much pain I could barely get out of my bed and hobble to the sofa! Now I am stuck here with my heating pad and can't move much still.

This after a morning just a couple of days ago where I felt almost normal upon waking.

This pain and my recent scan results leave me really thinking in swear words.

MRI results: compression fracture in one of my lumbar vertebrae and nerve impingement.

This is just from the briefing over the phone by the nurse. I will get more detail from the doctor on Thursday. (No, I didn't think to ask her to pop the results in the mail to me while I had her on the phone.) She also said the PET/CT showed no new cancer sites to the bone and no organ involvement, but some edema around the spine, which I have no idea about.

These are good results, right? Well I am pissed with them! I am in a serious amount of pain that does not stop at the lumbar area and this briefing of results does not explain all the pain.

Mostly I am pissed that I have a fracture, a skeletal event, which I have said all along was the thing I really wanted to avoid - breaks and fractures!  I'm not even sure anything can be done to facilitate healing in this case. WebMD said compression fractures generally heal, unless there is cancer involved. And the nerve thing...this is flashback to the pain of 08/09, before the METS, that lasted almost a year and through which I worked and suffered until I was worn nearly completely down.

I am barely getting around my house, in and out of bed, to the couch and to the bathroom!

I am sick of side effects. Sick of feeling like crap as a side effect of treatment and now this - pain not directly caused by the cancer, bones that may have been weakened by two years of anti- hormonal medications to combat the cancer. I've only been on a Zometa break for barely four months; Zometa, which was supposed to shore up my bones against "skeletal events", and which supposedly stays in your system for YEARS !  How could it fail me so soon? If one person mentions that weight can be a factor, weight that has increased as a freaking side-effect of AIs, I will scream, throw something, and possibly not speak to that person again.

So much pain. So debilitating.  I can't even sit upright for more than five minutes, and every oncologist visit is at least 3 hrs, all said. I don't know how I am going to do that on Thursday.

Damn it! I need to pee again. Struggle up off the sofa and into the bathroom. Pain flaring higher just thinking about it.

The doctor had better have a next-level pain med in his arsenal.

Jumbled

We lost two more well-known bloggers this week from the breast cancer community. Rachel was one of our most vocal and productive, in my opinion. She did research that made my head hurt just contemplating, and her strong voice was felt and loved across the web-o-net. Susan was a blogger and mother of young children. Sorrow for these women and their families reverberates across the blogosphere.

I couldn't finally get around to posting again and not mention the losses that are so high in our minds. My 'in memoriam' list is getting longer than my blog roll. Sometimes I think I don't want to find any new blogs to follow, as, in this metastatic cancer world, that means eventually losing a friend. A good run of a few years on a blog is a great run in the realm of metastatic breast cancer. So very very VERY few will be blogging for long, in the grand scheme of things. I'm grateful for the writings of Gaile Sulik, who has devoted her professional efforts to this cause and does NOT have the disease. I find an odd sense of comfort knowing that she isn't in line for the growing other blog roll. I feel like she "has our backs", and will be there to continue telling truths and waking up the population to the realities of this disease, long after many of us have logged off.

I just created a new euphemism. Okay, sure, someone probably used it before, but I gave myself a little snicker when I wrote it.

Sometimes when I keep things in my head rattling around, when I finally sit down to spill them out, they are too jumbled.

I had scans this week. The events leading up to them are just too frustrating to rewrite here. I whined and griped on Facebook about the difficulty of finding a way to use my port for those things which the Bard company assures us Power Ports can be used.

I also cannot sit for very long (another excuse for being remiss in blogging), though I did set myself up to be able to post things from my phone, which I can do lying down. It's more difficult to keep a thought when typing is that slow, but I decided that it is more important for me to start getting thoughts and events down in writing. My blog is not one of note. It's mostly for me, and for the few (you know how you are) who find solace in my ranting. So forgive me if it becomes more journalistic.

I've only been sitting here for a few paragraphs and my back is screaming at me to lie down already.

Pain, yes, the pain has been on the increase since just before Thanksgiving. I started Faslodex about that time as well, after discovering that Aromasin was not going to work, and I just couldn't bear facing the Femara side effects again. CEA numbers have been on the continuous rise. I put the scans off until the new year for new insurance purposes.

Scanxiety mode. The waiting period. Looking at disks from the scans pretending to understand any of it, to brace myself for the results. If it comes back that all this pain is a side effect of Faslodex, then hormonals and I are THROUGH. I will break up with aromatase inhibitors and divorce all anti-hormonal cancer meds. I am into serious pain meds and I will not continue a treatment course that causes this much pain and hasn't budged my tumor marker numbers. I do hope that it comes back that I have no fractures or breaks. I don't want to need surgery.

I heard some words that I liked the other day. I quoted them on Facebook, and am now waiting for someone to realize that I quoted a character from Stargate: SG1, though it is good writing:

"The success or failure of your deeds does not add up to the sum of your life. Your spirit cannot be weighed. Judge yourself by the intention of your actions and by the strength with which you've faced the challenges that have stood in your way. The universe is vast and we are so small. There is really only one thing we can ever truly control: whether we are Good, or Evil." ~ Oma Desala


I, like Daniel Jackson in this episode, struggle with whether I have made a difference, or made the contribution I was supposed to make, or contributed enough to deserve to rest in peace, in Alma's nap room (Alma 40:12), or in Daniel's case, Ascend. I contemplate asking friends to start thinking ahead of specific things they could share about me at a memorial service to show that I did SOMETHING of importance in this life, to show that I could possibly have fulfilled the measure of my creation, or if the bar was just set low that day. That is my main area of preponderance. I hope I used that word correctly. Spell check did not like it without the prefix.

I challenged a friend to lets come up with something profound or inspirational. Maybe I'll leave that to the writers for Oma Desala, but I did have an idea...

The tech who did my PET/CT scan was named Barbara. She did my last PET/CT in April. She is so kind and compassionate, in a strong way that makes me feel secure AND cared for. Nothing could fall by the wayside with Barbara in charge, and if someone else dropped a ball, she would fix it. The next time I have to do scans, I will remember to request Barbara. Until yesterday, I had been thinking, after the hassles I had with scheduling this time, that I needed to shop around for a new imaging center. But I think I would rather stay with Barbara. I told her she was one of the BEST medical professionals around.

So, in an effort to look beyond my own misery at times, I would like to announce Barbara A. of EVDI as the first recipient of my newly incepted "Favorite Medical Professional" award. I haven't decided if it should be "of the month" or "of the week", or day, or moment, but I feel inspired to take better note of the people who ARE doing their jobs well, and making my disease easier to bear.  Thank you, Barbara.

I will be working on the layout of a card to send, careful, of course, to avoid pink. Another day, when my butt and back have more upright time available. Maybe my talented friend A.M. will have some ideas.

Look forward to my new, more frequent posts from my phone, and be warned, they will be less composed and probably more bitchy, I'm sure. This is the point where this has to be more about me, a place to vent and a place to keep record. The typing and spelling will probably go out the window as well. Please do try to recognize the difference between typos and spelling errors. I will rest easier.

Supine time.