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.

3 times the fun

My brother has started a second round of chemo. Apparently it is 3 drugs in various combinations over about 3 weeks. He has been warned it is probably going to be harder than the first “low dose” regime.

We are still “separated” he is staying at my house and I am staying with my boyfriend til my leg heals from surgery but we keep in touch and I am still concerned about the effects of radiation on his neck aka large open oozing wound.

He sent me this photo with the message “I’m glad I got rid of this shit”

IMG_0953

I asked about the dressing they gave him and he blew me off saying it’s almost gone. Amazing how your perspective changes when you have cancer.

Note: The lump on his chest is his pacemaker. Read here about that

 

The homecoming

My brother will be coming home after an unexpected 3 week stay in the hospital. The routine appointment that turned into a trach, g tube and port placement.

Coming home means going to my former apartment upstairs in my big bungalow 2 flat.

I’m tickled pink to have my space back-I moved out 18 months ago on a roundabout of trying to find happiness. To New York and back-not that any of those places was bad…in fact I loved them all but now?

Now I want to be in one place. I need to have one home, my home.

I own this place, I work to pay the mortgage on this place.

I am more than happy to share it with my brother, my son, daughter in law, grandson and younger son.

Tomorrow I will unpack boxes and set up medical equipment-suction, IV pole, humidifier….

I have designated a whole counter for my brother to set up his tracheostomy and feeding tube accessories

This is my life now

The back story

It occurred to me that some people may wonder why this has all fallen on me…

The truth is that our mother, sister, other brother and his two daughters all know he is back from China.

They do not know he is sick.

They all have elected to stay away and he does not want to play the pity card.

Me? and my kids? We are now his next of kin.

I see this all the time in patients-more so in the VA where I now work. These very pleasant and friendly old (er) men who are estranged from wives and children. I envision that they must have been raging, abusive alcoholics or drug crazed-gun toting gang bangers but in reality maybe they were just like my brother…

A peace loving but terrorized by an angry ex wife man who escaped into alcohol to numb the pain of being denied access to his daughter.

At some point I may play my trump card and call in the reinforcements, knowing it will relegate me to a supporting role but for now I am enjoying the company of my big brother.

He hugs me a little tighter every time I see him.

This is getting real

After his abrupt discharge from the local hospital, still sounding like Darth Vader, my brother rather quickly engaged at the local VA medical center. It took another week to get in to see a Primary Care doctor who emergently requested his test results and set him up to see an oncologist and ENT…Ear, Nose and Throat. Emergent in VA lingo is a week later.

I took off on Monday to go to the oncologist with him. She was young but I liked her honesty and the way she talked to him. She didn’t have medical records and so could make a definitive diagnosis but asked us to go to the other hospital and pick up the actual biopsy slides so the pathologist could read them here. she said a diagnosis this important should not be left to someone else’s interpretation. I understood and agreed.

We went to the other hospital and asked around for the pathology department, was sent to a completely different building but finally stumbled into an office labeled “Pathology “. I said to the nice lady at the desk…”I’m not sure I’m in the right place but I was told I could pick up biopsy slides here”.

Imagine my amazement when she asked for identification, told us to wait in the waiting room and about 15 minutes later came out with a medium size manila envelope containing a few papers and a plastic box containing actual slides! Presumably specimens from my brothers neck.

We drove back to the VA and as we were walking in I nonchalantly looked at the papers pretending to check the name or date or something. What I saw quite clearly were the words~

Squamous Cell Carcinoma

 

How did this happen?

My brother had been living in China for the last 10 years. We had a cordial but obviously remote relationship during that time. Just before Christmas 2015 he sent me an email asking me to look at an attached document which was basically in Chinese but a few familiar lines stood out.

PSA, CBC…it was a lab report

It gave normal levels and even in its cryptic form seemed to show some very abnormal lab results.

To be honest, I didn’t think about it too much.

After Christmas/Winter Solstice and the usual niceties continued in this casual tone.

I am a nurse and very used to people posing health related questions.

He moved on to talk about tooth and sinus infections

In early January 2016, he told me that he would be away for a few days at a hospital having a battery of tests.

In mid January-Jan 12 at 6.42 am to be exact he wrote this:

The tests are back and I’m seriously fucked.  The diagnosis is cancer of the mouth, larynx, lymph nodes, liver, one kidney and one lung.  I’m not making this up and I’m not trying to be funny.  The best thing that could have happened to me was that the problem with my tongue made it physically impossible to continue to ignore the problem.  If it wasn’t for that I probably would have kept teaching until one day I coughed blood, went into a coma and died.  The doctors estimated that that unlovely event would have happened around the end of the school year (in about 6 months).

The lovebirds were back

Maybe I should call them early morning penguins? or snow bunnies?

After no action outside my window yesterday morning, today was a realization about how old I am.

Car number 2 was parked up bright and early with our little love-doves, both in the front seat, just talking and playing around a little. I was going to take a photo but thought what could happen? it’s too flippin cold (10F) to fool around…

then Car number 1 pulls up and the gentleman and his lady friend got out-as usual spent some time getting backpacks and stuff out of the backseat. At this point they looked pretty middle age and innocent next to the young couple in the other car. They head off to the subway…

So I jump in the shower and when I get out? The lovebirds are in the backseat, again! Engine running, window cracked so they don’t fog up the windows too much…

I had to shuffle off to work myself but I felt better because I got a good look at the guy this time and he was young so maybe they are just a couple who both live at home? I was worried it was an old geezer taking advantage of a younger woman or paying for sex…yuck, right under my window?

I sent this chapter of the saga to my friend and we both agreed they must be early 20’s-having sex in a car in sub-zero temperatures would never even be considered by:

  • anyone over 50 with anyone
  • anyone over 40 with their own partner
  • over 30 might consider it if they still lived at home with their parents

who knows what will happen tomorrow? It’s been fairly dark and cloudy, I wonder if a bright sunny day will change anything?