The Cancer Conversation

Nice Reception people at DICE in Stockholm

Hello.  How may I inadvertently devastate you today?

There’s no easy way to tell someone your seven year old boy has cancer.  It’s true that having a son with cancer is the worst thing I’ve ever had to endure.  I’ve had several experiences of feeling like my world has been suddenly restructured, and this has been the biggest. But it’s also true that, all things considered, his treatment is going pretty well. He has to go through a lot, and I feel bad for this interruption of his childhood, but I feel pretty positive about the outcome.  His cancer went into remission early on and hasn’t shown any sign of coming back; we’re dealing more with controlling the side effects of the chemotherapy. In short, this all sucks, but we’re used to it.

But having the cancer conversation is hard. Casual conversation can be a minefield.  A simple “How was your summer?” and I think do you really want to know?

I had one such conversation the other day.  I had to reschedule my doctor’s appointment because my son’s chemotherapy session got moved.  I’ve switched to Adderall recently for my ADHD, and I have less of a filter and things come flying out of my mouth.  The receptionist asked me “what are good times and days for you?”

I didn’t know how much to explain.  I’m on family leave right now, so I’m not working.  But my son’s treatment varies.  I ended up saying, “I’m pretty flexible.”  Then, in my filter-challenged state, I added, “My son’s chemotherapy got moved, that’s why I had to change the appointment.”  Shit.

Not that I don’t want to talk about it, but I don’t want to devastate someone in a casual conversation.  Which I just did.

She said, “Oh, that’s terrible!  When was he diagnosed?  I’m so sorry to hear that.” And so on.  Which are all sensitive and appropriate responses.  I mean, someone could say, “At least you’re saving money on haircuts!”

But I ended up, as I often do, consoling the other person.  “He’s responding very well, and he’s doing fine right now.”

The cancer thing slipped out not just because I had the Adderall talkiness going (which is why I could make a phone call in the first place) but also that I always feel the need to justify myself, even when the other person doesn’t care.  It took me a long time to realize that if I forget to pay a credit card bill or something and I call up the company, the person who answers the phone doesn’t feel personally offended that I didn’t pay the bill, and probably would be more offended to listen to my litany of excuses.

But I still feel like if I have to move an appointment, even for a justifiable reason, that I have to make that reason known because otherwise someone will think badly of me.  If I drill down far enough, I think I explain excuses to show that I am a good person because I often feel I am not.  Through years of coming up short and having no real excuse (that I understood) I perfected the art of excuse making.  Having a child with cancer is the ultimate excuse card.  I regret when I use it that way.  But of my many personality quirks, a big one is that it is deeply uncomfortable to have someone think poorly of me.  I don’t take criticism well (ask my wife) and put off things that involve facing criticism (ask my publication record) or apologizing for my faults. In fact, the thing that angers me the most is unfair criticism because, goddammit, there are plenty of justifiable things to criticize me for!

Ahem.

Anyway, the conversations I’ve had have actually gone pretty well.  People have been remarkably sensitive and generous.  The only insensitivities have been the non-conversations, the people who pretend not to see me in the grocery store because they know and don’t want to get all serious life-and-death-y in the middle of picking out some apples.  Or the parents and kids at school who stare. My son seems to have no self-consciousness in that regard; he doesn’t want anything to do with a hat. For me, the best thing to do in that situation is to just be routine.  Yep, picking up my son at school, same as you, boring old routine.

It also gets a little weird at the local hospital.  We have a setup where if Alec just needs a blood test, we don’t have to drive all the way down to the clinic for that and can do it at the hospital down the street.  There’s no oncology clinic at our local hospital, so there are no bald children running around everywhere like in our usual setting.  Lots of people stare with pity in their eyes.  By contrast, the clinic is one of the best places to hang out because, while there are some kids suffering through bad times there, there are also lots of bald kids just hanging out doing normal kid stuff, and you can just chat with parents without it being a minefield.

The best group (besides people in the oncology clinic) has been my poetry writing group. Everyone’s been through hard times and we just address it in our work and our conversation.  There’s a sort of directness there that makes it easy.  We’re not all that concerned with politeness, though everyone there is kind.  It just goes with the nature of the work.

So if you see me, you can have the conversation with me. Like I said, we’re used to it.  There’s no avoiding the cancer in our house when we have to give him medicine daily and take him in to the clinic at least once a week. It’s our new normal.

Cancer Funnies

I’ve had to have the cancer conversation about my son many times now. The one where I have to tell someone for the first time that my son has cancer, and get them through that piece of awful news. This diagnosis makes casual conversation tricky.  Someone asking me “how was your summer?” is a minefield.

Anyway, more than once someone has asked if my son has thought about medical marijuana for the nausea.  In those instances, I realized that I’ve neglected to mention the fact that he’s seven years old.

Also, I thought of a good joke:

Q: What’s funnier than a seven year old with cancer?

A: Everything.

Okay, maybe that’s more apt than good.

At least he’s rockin’ the Paul Schaffer look.

alec_paul

Gratitude Friday Five

It’s been awhile since I did this.  But here goes.  Five things to be grateful about today.

  1. I’m at home with everybody. My son and I have spent a lot of time at the hospital the last couple weeks. He’s home and happy tonight.
  2. I put in for family leave and will get to take a semester off from teaching.
  3. Despite my many deficits due to ADHD, I’ve managed to keep the same job for almost two decades.  Hence I had more than 1,000 hours of sick pay banked, so my family leave will be paid for.
  4. Twitter is a good pastime for all those hours in the hospital.
  5. I get my Subarus from a dealer who cares.

I lease our cars because we only have one and I walk to work.  This summer I brought in my car on the very last day of the lease without calling first. I explained what was going on and that I had let the lease slip to the last minute.  They didn’t have a car ready for me, but gave me a brand new loaner for a month for free.  I put 2,200 miles on it with all the extra trips to the clinic and they didn’t even bat an eye.  They gave me a free upgrade on the roof rack because they didn’t have it ready when I picked it up.  They even offered to drive the rack up to me, an hour away, and install it. I’ve worked with the same salesman for eight years now, and he never tries to upsell me and can always arrange what we need.

And a Subaru is the best winter car ever!

O Wind, / If Winter comes, can Spring be far behind?

O Wind, / If Winter comes, can Spring be far behind?

Back Where We Began

Not too many posts lately. Here’s why . . .

Alec's Progress

Alec’s been in the hospital since Sunday.  He mostly feels fine, and his cancer is still in remission, but he’s just finished another stage of his chemotherapy, and its typically a time that his blood counts are low.

The issue is his absolute neutrophil count (ANC), which is a measure of how well he can fight off an infection has been at zero since last Friday and on Saturday he started to develop a low-grade fever.  Our guidelines say to call in with a fever above 101 or a low-grade fever that lasts longer than 12 hours.  By Saturday night, his fever did not register and Sunday morning the same thing.  About midday Sunday he started to get lethargic and his fever returned, right around 99.  I took a nap, and when I got up, Laura said I should call the doctor.  I called, and the doctor said to bring…

View original post 674 more words

ADHD Cancer Dad

As I’ve written on the other blog, we’ve made it through the first rounds of chemo and are at home.  My son spent eight days in the hospital, and I spent quite a bit of time there alone with him.  My wife and I had to trade off.  We live an hour from the hospital, and since both our sons are autistic, one of us had to be home with the older son. We had no time to prepare.  We went from what was supposed to be a quick follow up appointment to being admitted to the hospital within a couple hours and started chemotherapy within 24 hours.

I used a lot of my ADHD coping techniques throughout the stay.  I kept a notebook with me at all times to write things down as they happened.  I brought sticky notes with me, and kept a wall of sticky notes for important things to remember or to tell my wife when we traded off.  Just like at home, she left notes for me as well.

I did have to explain more than once that I have ADHD.  There were so many doctors, nurses, and other staff that I could not remember names, of course, and had to explain to some people about my problems with name recall.  My son’s room had a whiteboard and they wrote in who was on staff each shift, which was very helpful. Also, everyone wore name tags, which would be helpful in the rest of my life.

I also could not turn off my observational/figuring things out mindset which sometimes proved to be an asset.  I noticed which nurses were more patient-advocate types and which were follow-the-rules type and was able to work that knowledge when I needed it.  For example, one of the follow-the-rules nurses asked me to tell the procedure room to change out the needle in my son’s port because it had been a week (a “port” is a device under the skin in his chest leading to a blood vessel that makes it easy to start an I.V. and it’s a lot easier to deal with than a wrist I.V. ).  It did not occur to her, however, that since he was going home the day, that the procedure would be pointless.  Also, even though he had the port going, the hospital wanted to keep an unconnected wrist I.V. installed for three days because of an upcoming CT scan (they could not inject the “contrast” into the port).  That would have meant having his hand all taped up and having to flush it every eight hours.

I asked that since he had the port installed and that they would be giving him the sedative before the CT that they could take out this I.V. now and just put in another after he was sedated. Since we were dealing with upstairs/downstairs bureaucracy, that hadn’t occurred to anyone.

I also thought that since there’s a computer in every room, there should be a screen for the parents to look at that showed the medication, procedures, and vital signs.  He was not eating for a time and losing weight, and I kept having to ask about his daily weight. I also lost track of all the medications he was taking, including the chemo and the medication to control the side effects, and they gave us a nice summary sheet at the end that I wished I had access to as it was going on.  The discharge nurse thought that was a great idea.

My affinity for video games helped out my son, too.  They brought us a Wii console, and we spent some of his happiest hours there playing Mario Karts and Mario Party. 923359_10200931456958005_1446469144_n

The Ritalin helped me a lot.  I knew when the doctors were coming, so I was sure to be properly dosed for them.  Also, it made it much easier overall to advocate for my son.  Although the hospital was excellent, there were still better nurses than others.  Most of the nurses piled up their work at night in as few room visits as possible so as not to keep waking us up.  One nurse, though, came in several times on her night shift and turned on some of the room lights each time.  After that, I made sure to talk to each nurse to make sure that didn’t happen again. I did not get a chance to talk to the resident, though, to tell her you’ve got to at least give a person thirty seconds to wake up before you start speaking at length about the forthcoming day.

Also, more than one person thought that if I was writing things down I wasn’t listening. They kept saying “I’ll give this to you so you don’t have to write it down.”  I had to explain that writing things down helps me process and focus on what’s happening.  I also thought it was silly to withhold the paper until after the conversation.  Why not just give me the papers first, so I could write on those?  I think they held myth about eye contact and paying attention. People assume that everyone processes and learns information the same way.  I am reminded of this when I encounter people who do not “get” charts and graphs.  I love a good visual model for complex information, but for a lot of people that’s just hieroglyphics.

Now that we’re home and through the first stage, the next stage for me is dealing with the rest of my life, which was hard enough before.  This experience does help my focus in some ways.  I cut back on some projects.  Things have to be done on a schedule, which helps. There’s a daily meds schedule on the cabinet in the kitchen.  This semester ends today and my grades are due on Monday.  It’s going to be a challenge to meet that deadline, and deal with all the work piled up in all areas of my life as well.  Another positive result, though, is that I learned to ask for help more.  I’ve always had the mindset that I have to do things on my own, and that asking for help is some kind of weakness or failure.  It seems silly to write it, but that’s my brain at work.

Cancer Dad

My life changed this week. On Monday, we took my seven-year-old son to the doctor for a follow up on a biopsy of a swollen lymph node in his neck.  It turned out to be positive for cancer.  The ear, nose, and throat specialist said that oncology was not his field so he would turn the case over to an oncologist and that we would get a call soon.

We were surprised at how soon. The doctor we visited was an hour away from home, so we had gone to a bookstore to let the kids play and get some food and try to absorb the news before heading back home.  We had been there only half an hour when I got a call on my cell phone.  The oncologist told us to bring him to the hospital immediately.

That was Monday.  By Wednesday, he had started chemotherapy and they had laid out a two-and-a-half year plan for treatment.

Most of my time has been occupied with figuring out logistics.  My ADHD had already been  on full blast for most of this year, with medication not right and other unusual stressors in play, so my job and finances and personal affairs were already in the hole.  I’ve had little time to reflect, having spent most of this week in the hospital an hour away from home. I took to packing a large suitcase full of mail and trying to find time to work when my son is sleeping or occupied.

Some of my work is easier now; things that usually stress me out pale in comparison to this new life we have.  It will still be challenging.  This time of year is working out okay; the semester is winding down, most of my classes are online, so I do not have to put in much time on campus.

The first two days were the hardest; we did not know the extent of his cancer.  I found odd times to grieve, passing his empty room at night, watching a Disney movie in a waiting room.  Driving back to the hospital, I had to avoid all music to be able to keep it together.  Even a cheesy 80’s hair band ballad on the radio threatened my stability. (Yes, Poison, I do need somethin’ to believe in.)

But we got good news yesterday.  The cancer is limited to his lymphatic system, and is not in his bone marrow or central nervous system.  Children respond much better to chemo than adults because their systems are healthier and more resilient. Given his profile, he has up to 95% cure rate without relapse and close to 100% survival rate.

Still, it will be a long treatment, more than two years.  He will have side effects, like losing his hair.  In his favor, one main side effect will be weight gain (he’s always been underweight).  Hard for us will be mood swings due to the steroids he will be taking.

He’s already responding well to treatment.  All the lymph nodes in his neck were swollen as were his tonsils, which had changed his voice and made it hard for him to sleep.  It’s been less than 24 hours since he started chemo, and his voice is back and the swelling is going away.

The hardest time I had was seeing him suffer through the procedures. We’re at an excellent children’s hospital, and they do everything to make things comfortable and not too scary for him.  Still, he had four different I.V.s and blood drawn.  He had a triple procedure on the second day: bone biopsy, lumbar puncture, and he had a port installed.  When I saw him come out of that, he had some dried blood on his face, and his skin was stained with antiseptic and blue dye.  Because of his swelling, he struggled with his breath for a few minutes while I was there.  That will keep me up at night.

Now that he has the port (a central line) installed in his chest, intravenous meds and blood drawing are totally painless and the wrist and arm I.V.s are gone.  He’s much happier with that. They came in during the night to run I.V. meds and draw blood, and because of the port, he didn’t even wake up.  His breathing is better, and he’s starting to eat.  He had some pain the first day after the triple, but is not in pain today.

If there’s anything to be grateful about its that we caught it early, we’re treating it fast, we’re at an excellent children’s hospital with great care, and we have very good insurance.  In fact the social worker today said our insurance is about the only one she’s seen that doesn’t necessitate the parents buying supplemental insurance.

I will continue to blog about my own perspective here, but have started a different blog to provide updates to family and friends at http://alecsprogress.wordpress.com/