Friday, March 16, 2012

The Opposite of Favorite Medical Professional

This past Monday, I restarted Zometa treatment. I took a "vacation" from it on the advice of an oral surgeon, for the root canal in October. The Oncologist and I kind of let it slide for a while, Faslodex garnering all our attention. With my CEA number on the continuous and not small-increment rise, I am hoping it does well for me again, pasting over those pesky lesions, or whatever it does, and getting my bones to a "stable" status once again.

I booked my appointment for the Zometa at the office close to my home, since I did not have an appointment to also see my doctor. I have been toying with the idea of changing doctors and locations permanently. Don't tell Dr.P. It's still a secret. Maybe we can chalk this up to trial separation and see how things go the next time I see him. I LOVE the nurse, Suzanne, at this location. She is the one who went out of her way to get me a new Rx for pain meds when I was in there just for a blood draw and in obvious pain. The office seems less busy, less chaotic, than the one where I go. 

The one adjacent to the hospital I hate. 
The one that is crazy busy and just a hot mess most days, 
like the day I went in for a check up, 
had my appt cut in half and landed in Hospital Hell for five days. 

I thought I would go in to the office near my home for the Zometa, and maybe take the opportunity to chat up Suzanne about the doctors at that office. 

To my dismay, when I arrived in the chemo room on Monday, Suzanne was nowhere in sight. She was apparently finally at lunch, after a very busy day (from what I could glean). Accompanying me today was a nurse I had not yet met there. Rhymes with Mathy. She seemed okay at first. I asked after Suzanne. Mathy said she was here but in the other room, did I need to see her? No, she is just the only Rn there I know. Mathy says then it's time to meet more and introduces herself. So far so good.

I sit for a bit and Mathy verifies that I am doing Zometa and my other shot today.

What other shot? Faslodex? No, I'm not doing Faslodex.

The other office said Zometa and Faslodex when they called it over to Suzanne that morning. (Par for the Hot Mess office.)

Faslodex was not working. We gave it five months. Last time I saw Doctor we decided not to do it. 

Mathy will have to call and verify. (As if they will force a big fat shot in both buttocks if I refuse.)

Being so recently out of Hospital Hell, where I felt my doctor had no idea what was going on with me, having felt so much relief at the thought of NOT having those painful injections today, I am still very emotional and close to tears at any given moment. Hick-ups like this, miscommunications like this are a sure way to get my water works going. 

Mathy walks over and sees my tears.

"Why are  you crying?"

Searching for a succinct answer, I go with being upset that the doctor forgot that we had decided not to do the shots.

"That is no reason for tears!"

All she has to do is call and verify, and there's no reason to get upset when I don't even know what the answer is yet. 

Kleenex box lands with a thud next to me on the tray.

Now I'm pissed AND crying. I barely speak to her again for the remainder of the visit. How DARE she speak to me like that. I'M the one with cancer, not just cancer, but metastatic cancer. I'll cry if I damn well feel like it!

The Doctor forgetting that we weren't doing Faslodex was just the quickest and seemingly most innocuous reason I could throw out at the moment that wouldn't induce a greater deluge. 

The idea that Doctor forgot we weren't doing Faslodex, or did not update my chart to reflect that we had not done it the last time I saw him and that we were officially considering it fail, the idea that maybe he had changed his mind and wanted me to do those painful shots, for which I doubted I could stand, considering all pain I was already in that day, the fact that Hospital Hell was such a recent and still painful memory are ALL, in MY opinion, REASON ENOUGH for tears.

If that's not enough add this horrendous pain that increased with the stay in Hospital Hell that was supposed to get it under control. Pain that may or may not be with me for the duration of my life.

My life, which is now being controlled by metastatic cancer.

Metastatic Cancer, which will kill me, after much pain and suffering. 

She can take her frickin' pick; there are many things in my life, combining in that moment of frustration, when something simple could not simply go off with out a hitch, that are REASON ENOUGH for tears. 

She never did even let me know that she'd received word back and I was right, no Faslodex. She just went ahead, accessed my port and administered the Zometa. At this point I was still open to salvaging her status in my book. I even thanked her on my way out. 

But, in the words of that famous 50's pop song, it's my party and I'll cry if I want to! It's my cancer, and I will damn well cry if I want to. Walk 10 yards in my shoes, lady, before berating my emotion. 

One person can make or break an office. One person's lack of compassion and kindness can ruin it for everyone. I love the other nurse there. She is exemplary. 

Mathy is her antithesis. Mathy shouldn't even work in a VET's office, with that attitude. Maybe she should work in a morgue, where the patients are already dead, and don't cry, and won't have their feelings hurt by her curtness and lack of compassion, (though I do believe that the dead deserve respect and kindness, just the same).

So, Mathy, as far as being a medical professional who actually helps, YOU FAIL. You represent the portion of your field who have no business in a profession requiring interpersonal relating. You represent the portion of your field who need to have an attitude adjustment. You are not mechanics. We are not automobiles. We are patients, dealing with illnesses, often at our worse emotionally. This is not basic training, this is not baseball. This is cancer. THERE IS CRYING IN CANCER!

Will I go back to that office for my treatments if I don't need to see the doctor? I don't know. It takes HOURS less to get in and out of there than it does at Hot Mess. But will I be greeted at Close to Home office by Suzanne, who welcomes me with open arms and goes the extra mile for me, as if I were a daily regular, or will I get stuck with Mathy, who sees me as an interruption to her busy day?

As patients in the treatment room for medical treatment of life-threatening illnesses, should we not be shielded from the frustrations of nurses who feel and are overworked, their frustrations with being on hold with pharmacies, with any number of scheduling inconveniences, etc, ETC? 

In ANY business office, the clients are not to see those frustrations. The clients are not to see overloads and the irritations. As an office professional, you are expected to suck it up, leave it at the door, and let the clients see a well-run business in which THEY are important. 

Why are we conditioned to accept LESS in a medical setting?

Monday, March 12, 2012

A shower just took all the strength I have, and I didn't even wash my hair. My hip is killing me and depression is settling in, crushing in on me.

I am puposeless. I am helpless. I am useless.

Saturday, March 10, 2012

Puked up my Perfect Prescription balance

Throwing up right after taking the bedtime meds is not the start of a restful night.

I hate throwing up. I usually don't ralph once in a year, so full-on power puking twice in a month is unheard of, unpleasant, and definately unwanted.

Last night I had a nauseous tummy that felt like it needed to be voided, and I even went to bed with a bucket by my side, just to be prepared. Tonight the icky tummy was back, and I thought how this could quickly get old, if endured on a nightly basis.

I had already taken prescriptions of which I keep careful track, and I doubt they'd had time to make their way to my bloodstream when up it came, dinner and all. So my pain killers and leg calmers and muscle relaxers and sleep inspirers were not where they should have been when bedtime called.

I tossed and fidgeted for over two hours. Careful fidgeting, as I am now in the vulnerable position of lying down, where a wrong or hasty move can cause pain, spasms or lock-up, and mental fidgeting, worrying and wondering if sleep will come.

And the depression starts to set in.

When the most all encompassing need, next to pain relief, is getting through that next bathroom trip without tears, swear words and further (what feels like) breaking bones and shredding muscle, the bigger picture is somewhat shrouded. When the most basic of human functions are once again becoming basic and easily achievable, the shroud lifts and bigger worries close in. I'm not completely helpless, but far from functional and able. I rely a lot on family member and friends. How long can this go on? My cash stash is dwindling fast, thanks to that funds-sucking foray into the nightmare they call a medical center, and I fear I may barely be able to squirrel away to cover another such future emergency, pay for the radiology treatments I hope are deemed potentially helpful to my pain situation, still replace the non-working toilet in my room and come up with a workable sleep surface of my own for the long haul.

Deeper still is the fear-based depression about getting through this Stage IV diagnoses to the point where I am Red-Rovered over to the other side, for painless rest and reprieve. I am okay with that part. I thought I was okay with the last days part, where they use all in their arsenal to make you rest pain free while waiting for you name to be called. What I'm not okay with are the possibly long drawn out median days, where the medium-to-big guns available at this stage often are nothing more than soft-pellet plastic pistols in their efficacy to me, leaving me to doubt that there really are big guns left in the Rx armory to get me comfortably through my end of life. But the biggest fear of all right now is that these median days of poorly addressed pain and discomfort last for years before I get to the end, the six months to go and NOW hospice can help you and hope to heaven they really do have a secret weapon, held back to fulfill that promise of dying in as little discomfort and pain as possible.

So what must I do to get through this NOW time, which could stretch on and on, so long as the cancer stays on my bones, where where it can continue to break, fracture, weaken, press on nerves, cause excruciating pain because it won't kill you from the bones but can wreak a lot of havoc?
I know, everyone's situation is different, everyone's motivation for enduring is diverse. This is where I am with my life and my need to proceed.

Since the vogue currently seems, for which I did not get the memo, to be to end a post with open-ended questions or seeds for discussion,
does anyone (of the three people still reading) have any tips regarding the regurgitation of one's Rx regime?
What plans do you have in place for the median days, while the end and hospice intervention could still be years off, when life is no where near functional or comfortable?

Wednesday, March 7, 2012

Copied and pasted updates. Lame excuse for a blog post, but as good as it gets for now.

On Monday, SDA and I got all the clean clothes that were piled on my dresser onto hangers and put into the closet. Kind of a huge deal, considering how long I had put the task off.

Tuesday was kind of a bad day. I made some phone calls, and was feeling rather helpless and stranded when a lady from church, SJ, called from the McDonald's drive-thru and asked if I'd had lunch. I hadn't eaten anything yet and kind of started crying. Within 15 minutes she was at my house, and must have called KC, the Relief Society (women's group) leader at church, and she showed up at the same time. SJ had her grandkids in the car, and took them home to feed them and get her heating pad for me, as mine had given up its aged ghost. KC sat and talked with me for a while. We decided that it wasn't working for me to be alone all morning while Dear Son was at class, so my mom will come over on M-W-F around 10 or 11, and T-TH, when mom goes to her exercise thing at the care home, KC will come by and make sure I get something to eat. Sujean is arranging for dinner to be brought in T-TH nights.

The doctor's office called back, he agreed to up my pain pills dose, if someone could be with me to make sure my breathing was okay on it. Mom and Dear Son went to pick the written 'scrpts up, and her car acted up on their way back. They made it to Mom's house and then Dear Sister came and got them and brought them here, so now Mom has my car. My mechanic brother will be in town this weekend to take care of her car. Car problems suck!

Mom is going to talk more with the hospice rep at the care home where her mother was about what is available in my situation. She came up with that all on her own. She knows him and is comfortable with him from when Me-Ma was alive, so this should prove to be a good "in".

I have an appointment to see my Primary care doctor tomorrow afternoon, and mom will come and take me.

We got the new Rx's before bedtime last night ,still taking the muscle relaxant also, which I think really helps, and is almost gone (hosp doc sent me home with that Rx), so I will ask PC doc to write it for me. Today, after all night and day on the increased dose, I think my pain is down a notch. From 6-7 to 5-6. Still higher, as I told the nurse at the oncologist office today, than I can live with long term, but slightly better than it had been.

I showered tonight in preparation for doctor visit tomorrow afternoon, and now I am laying here on the bed ready for sleep but still faced with the task of putting on underwear and PJ's.  I'd better get to it.

Tuesday, March 6, 2012

Weekend and Final Escape

I think all the nurses over thr last few days have branded me Bad Patient. They haveall either clammed up completely answer tersely when necessary or are uber polite to the fake lenght of sounding like they are reading a training script. It's a good thing the meals come frome a completely separate dept pr I'd suspect spit in my food. I am suddenly suspecting that I'm being given placebos. I'm kind of freaking out here.

 Why do grown women have to act like Junior HS Cheerleaders? I'm about to fall asleep again, so I'd better make some attempts.

I don't know how long I'll be here. I saw the hosp dr today but wont see my oncologist until tomorrow. I think I am falling out of dr-love with him. I I

 I never ever ever I swear ever going into a Banner hosps again.

Someone unadjusted my bed. Still now word from Polowy on scan results. I'm falling asleep ....nap time....

 I just woke thinking it mub aomehere outhaerv4 okay @ tjis is what happens when w.I type on pain mwds
I am in huge momour I just woke with a pondong hehadache. I hpoe thia is amizneiucbf. I will try aater
February 27

  • Still here but am determined to find the hopitalist, Dr Sharma and force him to discharge me still. :-/

    I'm not happy with some people 
    whom I still have not seen since Thursday.
  • I am Freed!!!
     February 27 at 6:31pm

    YES, they had to get me our of there before I proved my conspiracy theories and blew the cover off that live video role play action fight club they had going in that underground bunker of a operating room they had going on there... (more on THAT when I can bare to type it all out again...that is the part I lost using my phone for a lengthy posting.)

Monday, March 5, 2012

Friday in Lockdown

More compilation of text messages and Facebook messages.

I feel like I was kicked in my sleep by 15 mean people. Something is seriously wrong with this bed. Or I was abducted by aliens.

Oh thank goodness...the interventional radiologist guys were just up here to tell me about the lumbar/rf/cement procedure that they can do early this afternoon! I wish it was right now!
February 24 at 8:49am

Interventional Radiology procedure on my vertebrae at 1:00pm. Counting down to being knocked out! Hope they aren't going to expect any climbing maneuvers to mount their gurney...

Friends - be patient. Tired - interuptions - stoll mee dammit. Cant even type! Udoayed later.
February 25 at 11:20am

Pain. Too tired to type.or think.

‎(insert long story here - what details I remember of the procedure - to come) I really wanted to go home today. I was upset and feel like I was not getting betting here and the economic side that was not making for a great balance.

Long story short all decided that th probem was my bed. The ordered special matteess from a clandestine location. It is an air mattress that auto maticaly adjuststhe preasure pioints. Ican feel my hip. Pressing into the hardness beneath. Ever bottom out in an air mattress camping and awake sore the next day? Terriblely sore? X50 and that's how bad I'm going to be in the morning. I need to figute something out while I am still slightly lucid. Tomorrow I am baxk to wanting to go home...if I make it through the night.

I told the nurse., and she adjusted the weight input and seems now too be preventing the "bottom out".

But something in my body has shifted in a bad way. My hips are not right. I am not even sure I can get myslf turned over. I may even pee the bed soon as well.

I think all the nurses over thr last few days have branded me Bad Patient. They haveall either clammed up completely answer tersely when necessary or are uber polite to the fake lenght of sounding like they are reading a training script. It's a good thing the meals come frome a completely separate dept pr I'd suspect spit in my food. I am suddenly suspecting that I'm being given placebos. I'm kind of freaking out here.

 Why do grown women have to act like Junior HS Cheerleaders? I'm about to fall asleep again, so I'd better make some attempts.

Sunday, March 4, 2012

Why does that happen?

I worked long and hard today, thumb-pecking out a blog entry about more of my hospital stay before it fades to heresay. I went in just now to wrap it up and publish, and while attempting a small edit managed to delete all I had written. If I were working on the computer, I could have retrieved it, but no; I'm pecking away on my Android phone.  I don't know if I'll be able to get it all out again.

Sad. Frustrated.