The cancer rollercoaster

My brother has been so ridiculously optimistic through all of this. I feel both conflicted and guilty-I don’t want to squash his hope but somebody needs to be realistic here. Does anyone really survive T4N3M1 tongue cancer more than a year…or two max?

I just spoke with Dr. K and I guess I’m some kind of oncological wunderkind.  That’s great.  Wunderbar.  So keep your peepers peeled for my article in the New England Journal of Medicine.  I’m going to title it “The Man Who Kicked Cancer in the Balls and Ran Away Laughing”.

The next day  I spoke to Dr K and she addressed my concerns that either she was not being clear with him, he was not processing what she tells him or he was sugar coating everything for my benefit-she assured me that the exact word she used when talking to him was “incurable”. After his visit with his primary care MD I got a text~

Apparently unwilling to leave any parade unrained upon, Dr T hastened to explain that the masses in my mouth and neck are still there, they’re just smaller. And the average life expectancy for my type of cancer is 10 months.

During my discussion Dr K had told me that in cases like his they are usually talking months but my brother has never asked her details like that. Can you blame him??

He must have texted me as soon as he left the office because I got this awhile later

It’s a drizzly, shitty day.  I passed a funeral procession on the way back from Hines and I pictured what mine will look like.  I see 1985 Ford station wagon with a cargo strap across the back to keep my mortal remains from sliding out at red lights, and you in your little green Fiat with the headlights on, slamming a double cheeseburger because you’re on your lunch hour and have to get back to work.
It’s part of her job to not let patient’s hope grow to unrealistic proportions.  Maybe it’s unfair of me to think that Dr. Tran seems to like that part of her job.
I told him that I don’t think any doctor likes telling a patient news like that. From my experience though a doctor (or nurse) has to come off with a sense of authority so as not to be seen as wavering or weak. If my doctor is going to tell me I’m going to die in 10 months I don’t want them to giggle through that talk.
He went very quiet for a few hours and I wondered what must he be thinking – would he just decide to end it all now that it has been laid out in black and white? That’s what he told me months ago when he first arrived. So, imagine my relief and happiness to get this characteristic message
I ain’t beat.
Dr. K had mentioned T-Cell Immunotherapy.  There was a segment on NPR about it today and it is well worth looking into.  The American medical community is, of course, reluctant to try anything until Big Pharma signs off on it, which could take years.
There are clinics in Mexico who can deliver it right now, today.  It’s only been proven effective against a limited spectrum of cancers.  I need to find out if the one of my have is in that group.
Dr. T gave me some anti-anxiety pills.  She wanted to put me back on Prozac, which caused me to lay awake all night thinking of the best way to kill myself, or back on Celexa, which made me feel like my head was full of sawdust.
We settled on the minimum dosage of hydroxazine.  Truth be told, anxiety is much less of a problem than it was before I was diagnosed.  Death is no longer some mystical, distant thing.  It’s at the door and asking for me.
I am recovering well from my surgery and was able to have him and my son over last night. He actually does look very well and ate like a king. He enjoys the conversation and is genuinely an interesting and funny person to be with.
I worry about the future, I worry a lot but we have some fun stuff coming up and I am determined to help him enjoy life as long as he can.

quiet, peaceful days…not!

A lack of posts does not indicate serene calmness here. Yes, there is a distinct lack of CPR and other medical emergencies but an insane level of stress and restrained politeness has set in.

Brother Grouch has arrived. The humble, near death, grateful brother has been replaced by argumentative, selfish, know it all brother. It doesn’t matter what we discuss, I’m not going to argue with him-I defer to him on everything.

For example, he claims there is nothing to eat but I know there is pasta, soup, eggs, more soup, pancakes, snacks, ice cream, bacon, burgers…

No problem, let’s get other things to eat.

It’s not all bad. My brother is very neat and he did my laundry for me this week which is a huge help.

My boyfriend sent him a link to some “cancer cure”. I saw that my brother responded saying-“somewhere out there is a death certificate with my name on it….” he went on to say thanks very much but the VA is treating him very well

How do you draw the line on behavior with someone who is looking death in the face?

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

Cause of Death: Statistics

I started a Master’s degree in Nursing in August, not that it will get me great rewards in my career more because it’s a benefit of working at a university medical center.

The nursing classes are pretty easy but statistics?

Statistics nearly killed me, it hurt my brain and made me feel like I was reading a different language.

th

Unfortunately, due to work pressures I missed one 5 point assignment which now may be the crucial difference between a “C” and a “B”. The professor has kindly offered to accept my assignment late so I will have to give my brain one last workout.

th

too late now

it’s weird that i have never known more or felt closer to my dad than i do now-more than 6 months after his death.

my advise  for any fathers out there who have lost touch with your children…for any reason….for any length of time….

don’t let them wait until they have to clean out your dresser drawers, sift through your papers and photos to learn who you really are and how much you really love them

father's day, not happy

life changes

i haven’t stopped since my trip to portsmouth-unfortunately the morning was foggy but i did get a nice view of the sea from the 5th floor of the hospital. the doctor was lovely and now that i have passed the halfway mark of my visits i am starting to put together a small but extremely detailed database. i’m struggling to get to the magic “21” sites so i’ve resorted to begging, calling in favors and contacting other units at hospitals i’ve already visited…it’s not against the rules!

da boss has asked if i would come back next october to present a poster at the same conference i presented at last year-it will be in berlin. i would and bring my german mammy witih me

i worked this weekend-one regular shift and one extra shift. on the first day i ran my tail off taking care of two ladies. one was from west heath and we had a lovely little chat about the co-op, the new tesco and everything west heathen. i’m always keen to hear what places were like years ago…and she told me all about it and was very pleasant.

i did everything i could to get her out to the ward and home…coaxed her to eat a few bites of food…drink a little nutrition shake and got her out to the chair ~~ she pressed the button to give herself some morphine but started to get a little loopy. i took the button away but she remained confused …in a pleasant and silly way. her family were concerned but i assured them and truly believed myself that her confusion was due to the morphine.

during the night she became more aggressive and in the morning her tummy got firm and tender. the surgeons believed her bowel had perforated~~~ the decision was made not to operate again. they made her DNR, started a morphine infusion and she probably died last night.

this is not the first time i have seen such a rapid decline~~ but for me~~it underlines my decsion to leave bedside nursing. as much as i love my patients and try to do the best for them~i am becoming too sympathetic-too close

we use birthdates to identify patients and it seems like 9 out of ten when i see their birthdate it rings a bell for me~~either they are a year older than me ~~6 months younger than my son~~or like this lady a few weeks younger than my mom…

did i mention i have a desk in a cubicle in my new job???

a life examined

don’t know where to start this…i’m getting used to hearing the descriptions of my dad’s life over the phone from my daughter. of course, she never met him and my memories of him are from so long ago that usually i can guess what her next words will be. for example, even though his house is in a dirty mess-when she said they went out to the garage i knew she would say it was clean and organized, filled with tools and expensive equipment.

the revelations of this visit are essentially that he did have assets-cash, cd’s and stocks which contradicts his insistance that he had no money and beggars belief that he would live in such sad circumstances and die of what the medical examiner implies was a treatable condition when he had the means to get medical care.

it’s not easy~~~it’s uncomfortable~~ to uncover bits and pieces of a persons life after they’ve died. i am wondering what people would think if i died and my family had to come in and open my drawers, my mail, go up in my loft and poke around my side room…

i can hear them saying why did she keep this~~i didn’t know she owed that much~~she kept my first grade art project?

because out of everything my daughter has told me so far i can’t help tearing up that she told me my dad had a photo of my sister and her family, my kids….. and me (in my uniform) hung up next to his organ.

i watched a very old version of a christmas carol the other night~ had a jacob marley flashback

i missed my chance-i could have done lots of little things to make an old man happy-i guess my message to others is just to make sure you let people know that you care.