Wednesday, February 13, 2019

On a Rainy Day

The Fairy Ring

Oh, have you seen the fairies dance
Upon a Summer's night?
And watched the gnomes and pixies prance
Whene'er the moon is bright?
'Tis splendid fun to see them run
As soon as it grows light...

Eugenie Thornton

It's been raining hard all day today.
The sky is gray and the house would be dark without lights on.
Sometimes when the world gets too big,
too scary,
too overwhelming,
I escape to the tiny places.

This was my project today,
while dreaming of summer,
pixies and gnomes,
thatched roof cottages,
woodland creeks
and shaggy moss.

even when you are all grown up,
you need to play,
and find joy in a fantasy world
you create.

In your busy life,

did you find some time to play today?

Friday, February 1, 2019

Make Empathy Great Again, Part 2 of 2

So where did we leave off?  Oh yeah.  The bone biopsy.  Shiver me timbers, it's in me bones.  Aaarrrggggggghhh she says like a pirate.

I went to a large reputable East bay hospital aka John Muir to have the biopsy done.  I had considered having it done at Stanford but even the oncologist there said it would be perfectly fine to have it done locally instead of having to drive to Stanford.

I was told not to eat or drink anything for the twelve hours prior to the procedure and checked in with my Hubby.  He's my designated driver, my backup and my blankie.  Thank you Husband.  In sickness and in health.

I was shown to a hospital room and prepared for the procedure.  An IV was inserted, after a bit of wrangling over where the best spot on my arm was.  First of all, due to the risk of lymphedema*, I never get poked in my left arm.  I always use the right.  I'll admit, I'm not an easy stick. I even had an anesthesiologist tell me I'm a harder stick than a preemie.  I even once had an IV in my neck because the anesthesiologist (also John Muir) couldn't get the stick in my right arm and he was angry I wouldn't let him use my left arm. I had the puncture sites on my neck to prove it.

See all those?  Pokes in my neck from a frustrated anesthesiologist. 2011
(* What's lymphedema?  When you've had lymph nodes removed, which is often the case during a cancer surgery, it affects that area of the body trying to circulate lymph fluid.  As a result, you can get extreme swelling.  Since I had lymph nodes removed from underneath my left armpit, next to my cancerous breast, I was instructed to not use my left arm for needle sticks, blood pressure etc.)

Ok where was I?  I've learned from years now of sticks where my best spot is on my right arm.  It's not dead center at the elbow.  It's slightly to the left towards my body, it is not a convenient spot for them but it works.  I had to convince many a nurse of this.  After continuing to search for a vein in areas I told her she wouldn't find one, she finally agreed and got me in one stick to start an IV.  Folks, as a cancer patient, when somebody gets you in one stick, it's like a ticker tape parade with people cheering and confetti flying.  Most times you have to advocate for yourself though.  Some of the medical staff think they know better than you do about your own body.  It's often a battle to be heard and listened to, even by the people whose job it is to give you the best care possible.

The nurse asked me if I was in any pain.  I said 'No just psychic pain."  She didn't even laugh.  Come on Lady, work with me, I've worked hard on this material.

They finally came in to wheel my bed with me in it into the procedure room. I kissed Husband goodbye and made the trip in the bed, down halls into an elevator and then into the room.  There was quite a bit of hustle and bustle in the room.  Two nurses, two CT techs and I think some others behind a glass wall where they could view what the CT was showing.  They'd use the CT to guide the needle to get a core sample from the bone.  Oh have I mentioned yet which bone? My L1 vertebra.  I'd have to lay on my stomach and they'd take a sample from there.  With what you ask Dear Reader? A needle that's also a drill.  Gulp. Whimper whimper.  Somebunny help me!

The radiologist who would perform the procedure had not yet arrived as I was being prepped, the usual stuff they do.  Hooked up to a blood pressure machine, and electrodes everywhere to measure heart rate and stuff.  I noticed they were going to put the blood pressure cuff right next to the IV in my right arm.

'Um excuse me, I've had an IV blown before because it was put over an IV.  I have finicky veins.  Can you place it somewhere else?"

'It'll be fine,' she looked at me like 'Lady this isn't my first rodeo ok, let me do my job.'

I insisted.  She didn't listen.  She put the cuff on and started pumping it.  I could feel the pressure and the IV really hurting.  I told them emphatically.  Finally the other nurse said "OK lets move it, we can place it on her leg.'  I was relieved when they did.  I didn't feel like having to get a new IV started.  Yes I've had that happen before; see above photo that led to neck IV.

As I was laying there, in a hospital gown and hospital pants, I was starting to feel very anxious. It's really hard to do these procedures.  I don't know what's harder, when you do know what to expect or when you don't know what to expect.  I heard the two CT scan techs, both men, discussing what kit they needed; it appeared one was training the other.

I was getting nervous as I heard them discuss getting the "bone marrow kit."  Hmmm. I was puzzled. I thought I was having a bone biopsy, not bone marrow biopsy.  They continued to discuss the kit, the gauge size of the needle and so on, all things a patient does not want to hear.  I felt like a mannequin laying there on the table.  Mannequins have no feelings.  No brain.  No nothing.  I wasn't a person. I wasn't a survivor.  Nothing.

I spoke up.  'Excuse me but I'm not having a bone marrow biopsy,  I'm having a bone biopsy.'  The CT techs did not reply, seemed rather surprised I was talking to them.  The nurse came over and said "Didn't you have a bone marrow transplant?'

Now I don't curse a lot in my out loud conversations, but since my cancer ordeal I am known to curse like a drunken sailor a lot in my own head.

'An effing bone marrow transplant, am I in the right effing room?  WTF?' she says in her head.

I answered out loud.  'No I didn't, I'm a breast cancer survivor and I'm here to have a bone biopsy.'  They must have looked on the chart a little more, but still the techs hadn't really changed anything around from what I could tell.  We got the message that the radiologist was running a little late from another procedure but was coming in ten more minutes.

It was time for me to switch from the bed and onto the procedure table.  I figured once the radiologist came in I'd make sure I was in the right place having the correct procedure done. I was getting really anxious now.  I got onto the table to lay flat on my tummy.  One of the techs came over and said 'We'll try and make you comfortable, you will be awake but we'll give you lidocaine.'

'Debbie to blond brain, Debbie to blond brain, Holy shit, lidocaine, you're going to put a drilling needle in me and you think lidocaine is going to do the trick?  Mommmmyyyyyyyy. Jesuuuuuuusssss.'  In my head I started calling on all my higher powers, hoping they would forgive the language.

'In your IV we'll also give you something to make you more comfortable but you will be awake during the procedure.' Ok ok I relaxed a bit.  I got this.  I got this. YOU GOT THIS GIRL.

Everyone continued their little personal conversations and as I lay there, the other tech, who had not even introduced himself, begins to open the back of my hospital gown and tug at the back of my hospital pants.  His big hands pulled down the back of my pants to expose my upper butt, and I was startled.

It just hurt my feelings and it made me angry.  Would it have been so out of line for one of the female nurses to do this?  I mean he didn't even introduce himself to me.  I hadn't even looked at his face yet.  It was upsetting to me.  Very upsetting.

Despite my extroverted personality, I'm pretty shy and modest when it comes to having male medical staff. It makes me nervous.  I have usually always chosen female doctors.  I've had a few things happen in my childhood, teen years and even later as an adult; I just don't feel comfortable with a strange man's hands on me.  Even if he is medical staff.  My plastic surgeon at Stanford was a huge exception for me.  He instantly and every single visit made me feel so comfortable and he is extremely considerate, gentle, and very aware about being respectful with a female patient.  He was my exception.  Thank you Dr. Gordon Lee.

So as this nameless faceless tech was rubbing what I assume was betadine all over my back and buttocks area, I held back tears. Others in the room carried on chatting and he did his job.  I felt very sad and alone and scared and like I was there to get my oil changed or something.  It was so impersonal while being so personal.

I wanted to scream.  'Don't you people get what I am going through right now?  Do you understand I am a breast cancer survivor, that I spent a year in cancer camp, had countless surgeries and have been cancer free over eight years?  Don't you get that this test may reveal if my cancer has returned and has now spread? I may very likely be going from Stage 3 to Stage 4, not to mention, THERE IS NO EFFING STAGE 5?'

Look of course I don't expect to be cuddled and sang to and have a story read to me prior to a procedure like this, but I do expect empathy for my suffering, for my past history, and for what this current test may reveal.  And of course, the fear and pain of the actual test.  Can I get a little empathy here please?  A little kindess?  A little TLC? Is it too much to ask for some sensitivity from male medical staff when they are touching my body in personal places?

From this patient's perspective, this is how it should have gone.  Everyone who was present and part of the procedure should greet me by name and introduce themselves to me.  The procedure I'm there for should be discussed and confirmed.  It should be clear how much discomfort I'll have and what they plan to do about it.  How long will the procedure last?  And maybe, maybe just a little pat pat even if just on my hand as if to say 'There there now Mrs. Clay, everything is going to be ok.'

I'm a pretty tough little cookie, but that doesn't mean I'm wonder woman, that doesn't mean I don't have feelings, that doesn't mean I wasn't afraid.  I feel I could have been handled a whole lot better.

Just then the radiologist comes in, introduces himself to me then tells the tech's "You have the wrong kit. We're doing a bone biopsy today."

Enough said.
Radiologist now asks the techs to call pathology and ask how large a sample do they want.  They call and get his answer. I can hear them discussing then I hear radiologist say 'Well I plan on getting the biggest sample I can."

'DO I REALLY NEED TO HEAR ALL THIS? SHEESHUS HOW BIG A SAMPLE ARE WE TALKING ABOUT...' then I hear radiologist say "OK Mrs. Clay get ready for some pressure in your back...'

Now this ain't my first rodeo, I know when they say pressure, they really mean PAIN, and in goes the lidocaine needle in several spots towards the small of my back. I'm wondering why the drip drip drip of the IV didn't make that easier.  Now it's time for the biopsy needle otherwise known as a freakin drill.

In it goes, you got this Girl, you got this Girl. I hear myself groan loudly.  It hurt so bad.  I DON'T GOT THIS.  I DON'T GOT THIS.  I don't know if they upped my meds at that point, I don't remember a whole lot cause I was praying my guts out, repeating the Lord's prayer in my head a thousand times as I felt the needle go in deeper, lots more pressure and pain, and then I heard the drill.

god help me.  god help me.  I just can't do this shit anymore.  I just can't.  That's it folks.  I'm outta here, I just can't do this shit anymore. I wondered if God forgives major cursing during a prayer, if not, I'm really screwed.

Then it was done.  I lay there.  Like the proverbial wet noodle that just got my ass kicked.  I wanted to cry.  I think I did.  I heard the radiologist say he got as big a sample as he possibly could. I was done.  It took a bit of time to unhook me from all the electronics and BP cuff and get me back into the rolling bed.  I don't know how long it was before I was taken back to my room.

A completely different nurse came in to check on me after I was delivered.  I don't know if they were going through a shift change or what, but then another nurse came in after that one and took over.  I wanted to just crawl into my Husband's arms and have him rock me like a little baby and tell me you are a brave brave girl and I love you and you did it, it's over.

I just lay there. My back hurt.  Mostly though, my feelings were hurt. And I was angry.

If you are in the medical field and do not have a heart for service, you're in the wrong business.  If difficult procedures on patients are just regular ol duty for you and you have no empathy, you're in the wrong business.  If you are a hospital administrator and you don't provide your employees with regular empathy and sensitivity training, you are doing your patients and your staff a disservice.  If you are medical staff who is the opposite sex of your patient, please use the utmost sensitivity when handling that patient.

I just lay there.  My Husband patted me.

My back hurt like hell.

Mostly though, my feelings were hurt and I was angry.

Really hurt.

Really angry.

We're Gonna Need a Bigger Boat, Part 1 of 2

Happy Friday to you Dear Reader.  It's a gray day here in the Bay Area; another large storm coming our way tonight.  I can't complain given what I've seen in other parts of the country!  Brrrrrr.  Frozen-geddon!!!!  With all this rain we've had, especially after years of drought, my backyard lawn looks like a golf course green at Pebble Beach!

Today I thought I'd tell you about how it was discovered that I am having a recurrence and diagnosed with metastatic breast cancer.  It seemed to start revealing itself in 2018, when my tumor markers had a slight increase.  What are tumor markers you ask? When you have a history of cancer, you continue to see your oncologist on a regular schedule.  With me, it was every six months.  Prior to each appointment, I'd have to have blood work done which usually consists of the following: a CBC or complete blood count metabolic panel, tumor markers, and Vit D blood serum level.  Tumor markers are specific proteins detected in the blood that may or may not be a sign that cancer cells are present.  Some people have tumor markers.  Some people don't.  High markers don't always mean the presence of cancer.  Low markers don't always mean cancer isn't present.  Some oncologists don't use tumor markers.  Mine does.

We noticed early in 2018 my tumor markers had a slight increase. They should be no higher than 25, mine were like 31.  They had never been elevated.  My oncologist thought we should go ahead and do a PET scan.  I was against it.  I've been very cautious about over exposing myself to radiation.  No one really keeps track of your radiation exposure through and beyond cancer treatment.  I had seven weeks of high does radiation during my first trip to cancer camp.  I was very conscious going forward about not over doing it.  Some oncologists use PET scans to do surveillance for cancer.  I guess they feel the radiation risks are outweighed by the ability to detect cancer.  Some integrative or more holistic oncologists are very conservative with scans due to the radiation exposure for their patients.  According to the American Cancer Society, the average American is exposed to 3mSv (millisieverts) of radiation from natural background sources, like the sun, over the course of a year.   A regular chest X-ray is like the equivalent of 0.1 mSv or 10 days of natural background radiation exposure.  A mammogram exposes a woman to 0.4 mSv, or about the same exposure of 7 weeks of natural background exposure.  Guess how much mSv in a PET scan, which is a full body scan?  It's 25 mSv, in other words, like eight years exposure to background radiation in one procedure.  I decided I wanted to be more conservative and just keep a watchful eye.  All my other labs looked great and I was having no symptoms.  Instead of coming back in six months, she wanted to see me again in three or four.  At that next appointment, tumor markers were up again to 41.

Fast forward to this last October; I had an unexpected day off due to a power outage at the winery I work at.  (Have I mentioned I work at a gorgeous Napa Valley winery at the top of Mt. Veeder?  Yeah I'm lucky like that.)  I was on my way to work when I got the news so I turned around and went home and wondered how I'd spend the bonus day off!  Little did I know I'd spend it in agony, positive I was passing a kidney stone.  Yikes, had them about ten years ago and yes folks they are brutal.

Make a long story short, when I had a CT scan of my abdomen and pelvis to confirm kidney stones, it not only showed I had a few small stones, but I was suffering from an acute diverticulitis infection. Oy vay.  Diverticuli are small pouches that develop inside the intestines, can be age related, and are rather benign unless a small abscess forms in one.  I hit the jackpot.  I was prescribed antibiotics right away,  and knew I'd be off work for a bit to recover, and also find out what to do about the kidney stones.  That wasn't the only things though noticed on the CT.  At the very bottom of the report on the very last page it was noted that I had some "osteoblastic bone lesions" and given my prior history of breast cancer, the pathologist noted it could be consistent with metastatic disease.

My primary care Dr. hadn't even noticed or read what the bottom of the report said.  It was never discussed in my initial appointment after the CT.  The focus was diverticulitis and the kidney stones.  When I followed up with the urologist's office about my kidney stones, they seemed hesitant to see me and it was conveyed to me that I should discuss my CT with my primary care physician.  Obviously the urology office had read the full report.

My primary care physician was out of the office the day I called to get a copy of the report myself.  When I read the whole thing, I couldn't believe how the pathologist had 'buried the lead' and disappointed to say the least that my primary care physician had not read the full report.  I was in shock.  I emailed my oncologist to tell her, but since I was already due to see her later that week I knew we'd get to the bottom of this.  The possibility I could have a recurrence of breast cancer after over eight years cancer free really sucked.  Not to mention, going from Stage 3 to Stage 4 is a leap nobody nohow ever wants to make.

When I did my labs prior to seeing my oncologist, my tumor markers were now 141.  Strangely enough, my Vit D level, which I'm such a freak about keeping high, was only 16!  What the hell?  Even lower than when I was originally diagnosed in 2010!!  I had been taking 5,000 IU D3 for some years after my first diagnosis, after finding out the relationship to immune health and cancer and a whole bunch of other bad things when your D level is low.  This just made no sense.  Was the diverticulitis to blame?  Had I not been absorbing the D for some time?

My oncologist didn't try to break it to me gently.  She knows I'm a 'get to the point' kind of girl, but she was like 'It's back.' I'm sure given her experience even without biopsy confirmation she felt certain that the cancer was back and had spread to bone.  (She was right.) I was trying to stay hopeful. Maybe these lesions are just old-lady-itis; I was turning 60 ya know and I had read sometimes bone lesions are benign.

I was scheduled for a PET scan, which is a full body scan where a special dye with radioactive tracers is injected into you, usually with an IV.  You're placed inside a scanner and theoretically if there is metabolic cancer activity, you should light up in the spots where cancer is present.

Say hello to my little friend.
At least now I would have definitive answers.  So what did my PET scan show?  All the same spots as already seen on the CT scan, but nothing lit up. Thankfully no spots showed up on any organs but  what the heck?  Why didn't I light up?  I've since found out that my particular cancer, invasive lobular carcinoma, often doesn't light up on a PET scan.  Looking back, I didn't light up my first PET scan either, when I had a 5 cm tumor in my left breast.  That bitch should have lit up like a bright star in a dark sky but nope.

On the PET scan the pathologist noted the same 'diffuse' bone lesions but once again reported no conclusive evidence of metastatic disease.  At this point the only choice was to biopsy one of the bone spots to conclusively determine if the cancer was back and spread, and/or a brand new cancer.  All of this was going on during Thanksgiving, which was also my 60th birthday.  I decided not to tell my sons or immediate family until I had a definitive answer.  FYI they all later scolded me for keeping it from them, even if I didn't have answers.

'Mom weren't not kids like we were on your first go round.  Promise us going forward you'll always tell us what's going on, even if you're on a wild goose chase.' I promised.

I decided to send an email to my plastic surgeon at Stanford who did my reconstruction, telling him of these events.  He suggested I set up an appointment at the Stanford Women's Cancer Center for a second opinion, and his office set up the whole thing for me.  I met with an oncologist there, and she also concurred a bone biopsy was absolutely necessary.  'Let's make sure what we're treating here.'

I did my best to prepare myself for the bone biopsy.  I've had several surgeries, glitches and all kinds of procedures; cancer ain't for sissies folks.  I've had a chest port cut and ripped out without anesthesia.  I've had to pack opening surgical wounds like a civil war soldier.  I've had my boobs scooped out and my tummy cut end to end to make new boobies out of my muffin top.  I mean, come on!

How bad could a bone biopsy be????

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