Dear Maria

Last Saturday I participated in the Women’s March in Chicago. It was kind of a spontaneous outing for me. On Wednesday or Thursday my daughter asked me if I wanted to go for a walk on the nature trail but I said I wanted to go to the march. On Friday at work we were preparing for an event this Monday which coincidently included posters. That’s where I got the motivation to make a poster for the march. My first attempts were:

img_0564

img_0563

I have a long simmering hatred of Trump. I feel he is an opportunistic, self serving liar. You may feel different but as you see I am much more concerned with him taking payments from foreign governments while he is president AKA conflict of interest.

My next posters were a little more personal:

img_0562

img_0567

My second problem with Trump is his racist comments-Mexicans, Muslims…illegals.

Let me explain my last poster-

#1 I am a woman, mother, grandmother-I have a daughter, daughter in law, sister, nieces. I do not want them to ever experience that uncomfortable feeling, as I have, of being not quite good enough because they are female. At times I feel like young women have gone too far in the “girl power” arena but then I think back on all the small slights I have suffered. For example, I was laid off from a good paying US government contract job which utilized my Air Force skills when I was 5 months pregnant. About 6 weeks later a head hunter called me raving about my skills and promising me big money–when could I come in for the interview?? I said great but there’s just one “thing”…I’m 7 months pregnant. His words and I quote because they still burn 32 years later were…”Who is going to hire you like that?!?”

I have been a victim of sexual assault or in my case I was beaten up because I had my period-this happened in the basement of a house-while my girlfriend was having sex with her boyfriend in the next room and his family watched TV upstairs.

#2 I am a veteran. Okay, I served under Jimmy Carter but then under Ronald Regan. Things changed and got very serious, very quickly. I understand what it means to be an airman, your body is literally owned by the government. I served in a remote location in Turkey and gave birth to my daughter by emergency c-section in a trailer hospital. I experienced a Turkish military coup d’etat and lived under Turkish military rule for my 12 month deployment. I was placed on a rapid deployment team and had several “practices” in my last year. I signed a paper giving my babysitter custody of my daughter on a moments notice and transfer that custody to a family member for up to 6 months.

Trump apparently has plans to privatize the VA, my current employer. In some instances, say for a hip replacement or prostatectomy that may be perfectly acceptable but the VA provides a wide range of mental health services which focuses on PTSD and other veteran specific conditions. I admire our social work service for their sensitivity and expertise dealing with veterans who struggle to describe the horror of being in combat.. I do not support sending young (or old) vets to a local hospital for the multitude of veteran issues-they will be lost. Simply, the VA offers a camaraderie and acceptance that is not achievable in the private sector.

#3 I am a nurse. RN. For the last 30 years I have worked mostly in ICU, both in the US and England. iI someone asked what I do I would proudly say-“I save lives”.

Trump and the republicans are hell bent on dismantling the ACA. I vehemently disagree with this. I know how much work has gone into transitioning people to ACA. I believe in getting as many people as possible some form of health insurance. I have seen what happens when people do not have health insurance and do not participate in preventive medicine.

If there are issues with the ACA then address those issues but don’t just wipe out a whole system because it reminds you of a previous president.

Back to my title for this post

I have a very dear friend who is pro-life. I totally respect her view because I feel that she lives it and never wavers.

I just want to say

Dear Maria,

Please don’t let this march come between us. This march turned out to be a great moment of hope for me as I have been suffering extreme anxiety and worry since the election. It was not a single issue march and I think it was a bad decision to exclude pro-life groups.

Many people had many different views. The most empowering part was seeing 250,000 women (and men!) from infants to wheelchair bound –all graciously acknowledging each other on a warm. sunny Saturday in January 2017.

img_0583

img_0584

going to the dentist

A week or so ago my brother started dropping some subtle comments about a toothache. A toothache in a person with Stage 4 tongue cancer is not really a good sign. He’s had a ton of radiation to the left side of his neck. His toothache is on the right but I doubt that will give him a free pass.

He’s gone on to describe his dental history which includes several root canals in places like Oman and Thailand. Apparently this last holdout tooth is the supporting structure for this international dental scaffolding that sounds about as structurally  sound as a toothpick house.

Sometime I’ll run down the begats of exactly where I got each of my root canals.  Each one is like a reed.  The only reason I’m still able to eat is because each “reed” is still there.  If I lose one tooth it’s going to cause a domino effect where within a short time they’ll all either have fallen out, tipped over to where they’ve had to be pulled, or already been extracted for other reasons.

My brother went to the dentist and was prescribed antibiotics for a small “abscess”. When he followed up he really had his heart set on a root canal. He wasn’t too thrilled when the dentist said he could only do an extraction.

The rationalizing for this decision came fast and furious:

  • The VA doesn’t want to spend the money
  • He’s dying so why does he need a tooth
  • They are overworked and just can’t be bothered

Once again I found myself defending the entire medical community against this attitude. No, I don’t think that’s what they think and maybe…possibly…there is a clinical, research based rationale for the dentist decision.

After speaking to his oncologist who spoke to the dentist the word used was “unsalvageable”.

Now the thing to understand about this is that my brother gets the majority of his nutrition from tube feedings via his g-tube. The small amount of food he takes by mouth is actually defined as “pleasure feeds”. The loss of this tooth and the likely crumble of the surrounding teeth is a massive insult to his quality of life.

Granted he could make better food choices-he’s obsessed with meat/protein in lieu of soft mushy vegetables but I understand its just one more step down the path he does not want to go.

The next step is that he has an appointment for a second opinion at the VA hospital where I work….oh boy….grumpy brother will be at my workplace!!

It’s not what it seems

You might think that no posts means no news but actually it is a reflection of my exhaustion.

My brother completed his first round of chemo aimed at actually prolonging his life. When I spoke to the oncologist about two weeks ago she clarified that the first 6 weeks of radiation and chemo was just to shrink the massive tumor in his neck pressing on other vital structures such as his carotid artery.

“The plan” is to give him 6 cycles of chemo-each cycle is 3 medications over 3 weeks. It is expected to be pretty rough with a cumulative effect. It appears that chemo is a gauntlet where only the strongest (and luckiest) get to move on to the next round because there are lots of side effects and benchmarks that have to met.

My brother has basically failed after only one round. His second round has now been delayed two weeks in a row because his white cell count is low. White blood cells fight infection, the normal range is 4-10. That’s not a very wide range. Look around at all the humans in your vicinity-they all have WBC’s between 4-10. If you happen to have a family member with the flu their WBC’s might be elevated to 12? My brother’s WBC’s are 1.95. Technically that is neutropenia.

In the world of oncology that is not earth shattering, it is actually an expected side effect. The twist is that we-BF, Bro and I are planning to go to camping at the annual hippie fest in Vermont. Neutropenic patient with a trach, feeding tube, port catheter and pacemaker camping? What could possibly go wrong? Hmmmm…..cuts, bug bites, rashes, river water, generally questionable hygiene????

My brother is very opinionated and he didn’t hold back today when I questioned the test results that didn’t quite make sense to me. He kept saying his platelets (related to blood clotting) were low but saying it was his immune system…

Whatever it is that they measure before they give me chemo, there’s not enough of it for my immune system to function properly.  In fact, the nurse today said that if they went ahead with Day 1 today, the chemical they give me could reduce the effectiveness of my immune system to the point where I would have no immune system at all.

They decided that that is unsafe.

I reassured him that he doesn’t need to know everything about his treatment to which he shared this insight

An NP took about 15 minutes today and explained pacemaker values (the theory behind the numbers) to me and I was gobsmacked all to hell.  Usually I’m treated with all the consideration of a hog in a slaughterhouse by people who look at their workday and see only a long row of whiny meat puppets that seems to stretch on forever.  It’s not their fault, they just don’t have the time to get up close and personal.

From the mouths of patients to the ears of healthcare workers

 

Sometimes I need to speak up

Sunday I saw my brother after more than a week. His radiated neck was open, oozing and raw. I casually asked him -“hey, what’s going on?” He said-“no, big deal, it’s better than it was…”

Really? He went on to say that he was told the red, burned skin I saw a week ago would slough off but the way the trach ties a rubbing his raw skin was just not right to me. He clearly had blood dribbling down his chest at some time.

Pain? He has complained about pain to me, in fact I gave him all the Norco I got (and didn’t take) after my surgery. Thinking this through I regretted that decision. A cancer patient with mets to their liver should not be doubling up on acetaminophen. When I broached this subject though I was confronted with excuses and misconceptions.

Monday morning I reached out to my brothers medical team via a nurse (love nurses) call center. They listened to my concerns, asked appropriate questions and sent out a message to ALL his caregivers- oncology, radiation and ENT. They all called me back with a high level of concern. They defaulted to his primary care doctor to see him today and call in the others as needed.

In my head i was thinking about all the patients I have cared for with huge gaping wounds from radiated tissue which just crumbles apart and carotid arteries which spontaneously rupture….

PAUSE::::This is where is have to say the VA has been awesome and exceptional !!!

So this afternoon I text my brother to say “so did they sort you out today?”

All I got back was “A OK”

In my current state of incapacity that will just have to do for now.

The reality of being a caregiver

Today was the day, the big coming home day. Within 48 hours of my tenant moving out the apartment was habitable. This required help from both my sons and me taking the afternoon off to finish unpacking some essentials.

We still are missing a shower curtain and other miscellaneous items but there are beds with sheets and pillows and blankets-food in the fridge- and it’s clean.

I had an appointment to get my taxes done at 4pm so I was wondering if my brother would be ready to go at 2.30 as discussed or should I wait till after my visit to H&R block. No call from the hospital and it took me 2 calls to get through to his nurse.

When I posed my question she giggled a little and said “the pharmacy is going to do their thing” so she advised me to come after my appointment. I wasn’t really instilled with confidence by her response so I called the social worker just to make sure that his discharge wasn’t getting pushed back to Friday.

The social worker confirmed that all his supplies had been ordered from pharmacy and agreed that it was probably better to plan on coming after my tax appointment.I had some additional clinical questions and she said she would have the Nurse Practitioner call me-which she did very promptly and after our friendly conversation AGAIN agreed it was probably better to come after the appointment because he had so many supplies ordered it might take awhile.

Assuming that on of these professionals would communicate this to my brother I toddled off to the tax man early hoping to get to the hospital by 5.

Imagine my shock when I received this email:

You have my phone number and you have my email address.  You can email from your phone.  When did you plan to tell me that there had been a change in plans?

 

Am I supposed to sit by the door with everything packed up waiting for you all afternoon?

 

Tracy, I’m starting to see a pattern here.  Do you even consider me human?  Do you think that I don’t have the same wants, needs and feelings that you have?

 

I depend on the staff for my survival.  When you call and antagonize them all it does it makes it harder for me.  Is that your intention?

 

I’m not trying to make you responsible for me.  I’m not looking for a mother hen or asking you to adopt me and treat me like one of your kids.  I just need a place to sleep and a flat spot that I can work on.

 

If that’s too much to ask, say the word and I’ll move into ECC and put in for emergency housing.

Really? I had to look at the name, date etc to make sure I was reading this right. it wasn’t just this he went on and on over several emails basically to tell me what a horrible person I am.

I’m really hurt that Easter was mysteriously canceled.  Was it canceled for everyone or just me?
I’m also really hurt that on several occasions you said you were going to stop by and then didn’t show up, not even bothering to contact me.
I’ve been looking forward to getting out of this place for a long time.  I’m really, really hurt that you not only don’t show up when you said you would, you make no attempt to contact me, treat me like the village fucking idiot and leave me sitting here all afternoon without a clue.

I cut short my appointment and raced to the hospital only to have him say the same thing to my face-that I have pissed off every staff member and ignored his needs and basically abandoned him.

I am so stressed out-I burst into tears-I kept saying “I’m sorry”..I explained all the conversations I had and how I bit my tongue about some of the shitty nurses I dealt with over the past 3 weeks but no, I’m the bad guy??? “how many times do I have to say I’m sorry ?”

He hugged me and tried to cheer me up but I kept thinking:

  1. Maybe this is why his ex wives and daughters don’t speak to him
  2. Why do so many men think they can treat me like this?

It’s amazing how people change when they have a little oxygen flowing to their brain

Circling the drain

I have in general been feeling very good. None of my signature depression and pessimism despite being surrounded by (insert the E word). The news about a nurse infected while caring for a patient from Liberia in Spain has not helped the general mood of my department. Today we were asked to agree to be the monitors of clinical staff when they enter/exit the room of a potential E patient. That’s pretty darn close to the fire….

It’s interesting how the hospital administration is indoctrinating staff that there are no Ebola patients only “rule out Ebola” (potential) patients. It’s important enough to authorize overtime for some very well paid nurses to come in at 6am just to train other staff to take off their gowns properly.

I have to confess that I started filling out an application to be a UN volunteer in West Africa. I feel that in some ways I am the perfect candidate-I am single, an experienced critical care and infection control nurse, world traveller, culturally sensitive.

For me the main drawback besides the risk of death is the heat. As a middle age woman I am heat adverse. Following that thought, sweat is a source of infection so I would hate to be sweated on or sweat on somebody else…

Anyway, the drama continues.

I was responding to a thread I have on this blog “the next person” (check it out..you know you want to…) it takes a little thinking and I try to forget that it’s just me and my friend (check it out…we need more participation) and on this occasion I started out with:

The next person questions the meaning of life on a regular (daily) basis

but after various iterations I posted

The next person has a pair of red shoes

And there you have the meaning of life~~it’s the color of your shoes

facebookless

About 6 months ago I “deactivated” my account because you can never really delete yourself or leave facebook permanently. I can’t say I was ever a huge user but it was an easy way to stay connected and do a bit of snooping…on occasion.

I do miss it sometimes, I have to find other ways to communicate with my friends but when I read this

Mark Zuckerberg is now richer than Google co-founders Sergey Brin and Larry Page.

The Facebook chairman added $US1.6 billion ($1.7 billion) to his fortune as the world’s biggest social network ended last week at a record high.

The surge elevated the 30-year-old’s net worth to $US33.3 billion, moving him past Mr Brin, 40, and Mr Page, 41, as well as Amazon.com chief executive Jeff Bezos, 50, on the Bloomberg Billionaires Index.

Mr Zuckerberg is No. 16 on the ranking. The Google founders are 17th and 18th. Mr Bezos occupies the 20th spot.

“He’s just getting started,” David Kirkpatrick, author of The Facebook Effect, said.

“He’s going to become the richest person on the planet.”

I knew I’d made the right choice. It all goes back to my old rationale- Why do those people deserve that kind of money? What have they invented that serves human beings and changes their lives in spectacular ways?

The average nurse improves more lives in more dramatic ways than any of those men…

and they will never be billionaires…or even millionaires.