By Phil Pilato
After a mastectomy, five months of chemo, dealing with my mother’s illness, and working full-time – I think I could safely say I could’ve used a rest – but alas it was not to be.
The last week of July – the week of my last chemo – I should have been celebrating – instead I was cleaning out a room for my mother to stay in my apartment. The small bedroom we originally used as an office, but it soon became a storeroom – and 12 years of accumulation was stuffed in that 9 x 12 room.
It took the better part of two weeks to clear it out.
However, my mother was only in my apartment for less than a week. We rushed her back to the hospital – after she pulled out her feeding tube. They put it back in, then discovered she had scabies – a form of parasite that goes under the skin and causes massive itching. She got it from the rehabilitation/nursing home she had been in for 3 months.
It’s very common in nursing homes – and is very contagious – if you have skin to skin contact. I did – having held my mother’s hand, and stroked and kissed her forehead.
I wasn’t itchy – but asked the doctor if there was something I should take just in case. He prescribed a cream which I had to put all over my body – from head to toe – and even between my toes.
Then I had to shower it off after 8 hours. It’s funny how thinking about something can make you feel it.
Like I said, I wasn’t itchy – but after applying the cream and showering it off – I suddenly started to feel itchy – it was of course all in my head.
My mother also had gotten bed sores, including one on her head from the nursing home – so the hospital would deal with that too. They had put these mittens on her hands – so she wouldn’t pull out any tubes – but she was so insistent to me that the gloves come off – holding up her hands – that I pleaded with the doctors and nurses. They reluctantly agreed but insisted if she pulled out her tubes – the gloves would have to go back. The next thing I know – the gloves were back on – they told me because she had pulled out her trache again. When I got there I pulled off the gloves – and made sure I put them back on before I left. 20 minutes after I left the house doctor called me frantically telling me she had gotten the gloves off and completely pulled out the trache from her throat. They were intubating her again – and a decision would be made in the morning about re-tracheing her.
After a few days of contemplation I felt it was tracheing her in the first place that got her in most of this trouble. The doctors then had said she’d be more comfortable with a trache – but after seeing her struggle with this treach for 8 months – I knew she pulled it completely out for a reason. So when they called for permission to re-trache her, I refused and instead had a long talk with the doctors – specifically the pulmonary doctor – and told him I’d rather try to wean her completely off the vent – rather than re-trache her and go through this whole situation for another 8 months. So even though he didn’t think it would work – he was willing to try to wean her off the machine – and then extubate her (remove the tube from her mouth and throat.) She has to breathe on her own through her mouth and throat. I’m confident she’ll be able to do it.
Even the pulmonary doctor has gotten more confident – telling me this week – they’re all “impressed” by her progression in the weaning process. However, the family doctor is keeping me grounded – saying he doesn’t want me to get my hopes up too high – saying I should consider hospice care if she doesn’t come off the vent. We should know in a couple of weeks.
Meanwhile, my cancer treatment still goes on.
My hair is growing back. It’s fully grown on the sides and back – but the top seems to be stunted – with little stalks sticking up — a typical male pattern baldness – something I never had before. I’m told it will all grow back eventually – but it doesn’t stop me from feeling like Sampson must have — proud of his full hair and depressed when Delilah cut it real short.
My finger nails still have discolorations on them – but as the nails grow – the discoloration is moving closer to the edge.
As for my body hair — my chest hair is coming back – and so too is the hair on my legs.
I never shaved it off – so the side that stayed hairy is still hairy and the other side is growing light blonde wisps of hair. The same goes for my arm and facial hair – and now I find myself complaining about having to shave my face again.
I was all set to go to what’s called a “simulation” – where they tattoo marks on my chest for a grid to guide the beams of radiation. They were also going to make a body mold of me so that I would stay in the same position while the radiation was being delivered. Instead, the day before the “simulation” – I got a call from one of the doctors from Sloan-Kettering saying they’d have to postpone it a week, because my insurance hadn’t approved the “Trial”.
“Trial?” I said, “What trial?”
“Didn’t someone call you to ask if you wanted to participate in Dr. Ho’s trial?’
“No” I said.
“I’m sorry you didn’t get a call – I’ll make sure someone calls you to explain it and I’ll call you back this afternoon for your decision.”
The trial I found out was a newer way to deliver the radiation. Normally, breast cancer patients with stage 2 cancer – get two beams of radiation – one aimed at the breast area, the other under the arm where the cancer positive lymph nodes were. Radiation is recommended for patients with four nodes positive for cancer, I had ten positive. With this kind of radiation there is a risk of hitting the heart and lungs. Heart and lung problems could develop 20 years later.
The newer delivery is using multiple beams — six or more – of radiation – all adding up to the same amount of radiation as before – but aiming them more precisely to almost pinpoint accuracy. The idea is to reduce the amount of radiation that might hit the heart or lungs. The procedure is being used for prostate cancer – and has been done before at Sloan-Kettering for breast cancer, but never on this scale. There are 100 patients in the trial, and I’m the only man so far. Since one percent of men get cancer, I guess that about fits in. I would be followed for five years – and would have to take a pulmonary test before radiation begins and then again 6 months down the road.
I had no problem with the trial since pinpoint accuracy is a good thing, and being followed for five years is another benefit. I was told however, that except for the pulmonary test and a few follow-up visits down the road, I’d basically get the same care if I decided not to participate.
When I finally got to do the “simulation”, I was all set for my body cast – thinking this is going to be a museum-piece when the nurse informed me I wasn’t going to get the body cast – the doctors wanted more flexibility so I would be “boarded” instead. That is I would lie on a board, with arm holders/restraints to keep my arms in position, and a cushion beneath my knees. I would have to stay in that position for 45 minutes each day.
When I walked into the room for the simulation, there was this cat scan machine in the middle of the floor. Now I had had CAT scans before, but not like this. The arm holders stood up in an array at the head of the “board” – and I was reminded of the 1960’s movie “Fantastic Voyage” – where a group of doctors are shrunken to go into the brain of the President – to remove an aneurysm before it bursts.
Around his head were these radars to keep track of the team in the mini-sub – that’s what these arm holders looked like.
I laid down and put my arms in the holders and the nurses adjusted them for both comfort and keeping my arms out of the way – and to be able to get under my left arm specifically. They recorded the settings on both the board, which they adjusted for my buttocks, and for the arm holders. These same settings would be used each day to make sure I was in the same position to get the radiation.
Then they laid out a grid on my left breast-area, strips of thin metal (for the car scan images). Dr. Ho adjusted it, and then, using a sharpie marker, they marked off the grid on my skin. Finally a nurse came with a tattoo machine and marked off certain spots on the grid. After she finished she told me I had good skin for tattooing. So if I ever want an anchor on my chest, I know it’ll look good.
Then after taking a series of photos and x-rays to pinpoint the spot, I was handed an appointment slip for the set-up – which would be the following week in the afternoon, I protested that I was supposed to be seen in the mornings – which is what was told to me months ago – and they said set-ups can only be done in the afternoons.
The setup is basically a dry run through on the actual radiation machine – to make sure all the measurements were correct. The simulation and setup give the doctors time to craft the treatment plan( how many beams of radiation for how long each one should last and at what angles for the best treatment possible.
My treatment would start the following Monday.
Phil Pilato is an editor at 1010 WINS radio and a Councilmember of the Writers Guild East. In December of 2009 he was diagnosed with Stage Two Breast Cancer, rare in men. He decided to try to help other people better deal with the disease by blogging about his own experiences.