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!!
My brother has gone from a regular night schedule —Pretty much quiet from 10pm to 6am but with increasing trips to the bathroom and coughing spells —to a night time free for all.
I can excuse the coughing and piss breaks because those can’t be helped but I draw the line at putting away a full rack of clean dishes at 3am….when I have to work the next day!
I emailed my feelings to him early Friday morning from work using his style of direct and to the point-
Can we please agree to keep the noise down/to a minimum between the hours of 11pm-5am?
No response or acknowledgement-My empathy river has pretty much run dry.
He has said he feels he has a toothache coming on and was chuffed that he was able to snag some dental care at the VA. He is missing the part about the significant radiation therapy that he had on his throat, neck and jaw back in the spring. I’m guessing he may have osteoradionecrosis.
Perhaps the most severe side effect of radiation therapy is osteoradionecrosis (ORN), or bone death. This condition occurs in three to ten percent of patients. Osteoradionecrosis develops as irradiation diminishes the bone’s ability to withstand trauma and avoid infection, and it can be facilitated by poor nutrition and hygiene. This process may be spontaneous or result from trauma, leading to non-healing soft tissue and bone lesions, followed by bone necrosis. The non-healing bone may become secondarily infected.
The photos of this complication are not pretty so I’ll refrain from posting but feel free to google if you have a strong stomach.
I know my brother is lonely. I know that he is bored particularly since the weather has turned cold and he can’t get out on his bike. I feel bad that I don’t come home after a long day at work chirpy and dying to chit-chat. I also feel bad that every time I turn around my brother has another demand. With the last one I wanted to say tell me about your living arrangement in China…did you have a concierge service that you submitted all your requests to???
After a rather trying end of last week into Saturday, I spent a lovely day with my daughter and grandson at the conservatory. One of the problems around here is that my grandson is very selective about who he wants to spends time with and specifically screams at the sight of my brother. Mixed gatherings such as Thanksgiving and any old meal time or party are very problematic.
Luckily, I was feeling slightly more relaxed -I still had to make a trip into work to clear the OR’s after some work was done. Surprising even my self I asked my brother if he wanted to take the ride into my workplace just to get out. He nearly jumped off his seat like I was dangling a few $100 bills in front of him! He was in his shoes and jacket in a heartbeat panting like a dog at the door.
We drove to my work and enjoyed the city skyline at night, he waited while I did my little inspection and we headed to the chain home store for a special lightbulb. He was pleasant and agreeable the whole time.
As we headed home he motioned towards a Taco Bell-3 crunchy tacos!
He’s much easier for me to deal with when he isn’t breathing down my neck. He was even more relaxed when I got home today. I can do this.
One day last week my brother came to me as I was putting away my laundry. He looked a little distressed as he said to me-Can I have a hug?
I complied…against my nature asking-“What happened?”
He said-“I’m dying and I’m scared”
He continued-“I’ve lost my family, my friends are gone….you are the only one I have left”
Then I wondered if this was the time to contact his daughters…
Maybe he was coming to terms with the whole scenario….maybe he was ready to make peace with his family…
After the brief hug he recoiled and said “That’s fine, I’m good, I can go on”
Shortly after he was back to his usual critical self
I guess if I was starting a brand new blog about caring for my 60 year old, three times married, ex alcoholic, estranged from his daughters and living in china for the past 10 years brother who landed on my doorstep 10 months ago with a baseball size tumor at the base of his tongue~that’s what I would call it~Mean people get cancer too.
We were always the closest of all my siblings in age and being the two oldest knew the most about our shared family story. But life has a habit of knocking people around a bit, as above and while I have always been the grumpy one he was as I remember the “golden” child. Blond, blue eyes, clever and creative~mom’s favorite!
I’m not sure the exact route he took to his own particular isolation, how much inflicted on him vs self inflicted- but I can say that if you imagine that mean old man who scares little kids for walking on his lawn….that is my brother.
He just has this acerbic tongue attached to a selfish brain with no filter. I am by no means a shrinking violet but even I am intimidated sometimes…in my own house!!!
So while I will do my best to care for him til the end it is not easy. Make no mistake~Mean people get cancer too~and not all of them have a personality change or epiphany.
I received this email from my brother-the one who is dying of tongue cancer….
You’ve expressed a level of uncertainty about my intentions. I plan to live to be about 130 and die in bed with several teenage girls. I’m serious.
There aren’t going to be any “surprises”. There isn’t going to be a bad hair day when I decide to hang myself or swallow a bunch of pills. My mind just doesn’t work that way.
I’ve told you what the end times are going to consist of. I know the exact spot where it will occur. Not many people can say that. I’ll take you there, if you’d like. If you go west on 31st St. from the Gables you’ll reach the bridge over the Des Plaines River. Before you cross the bridge, cut off the the right (north) and go down along the riverbank until you can see the flagstone building across the river. I think we went there to get out of the wind one time when we went ice skating. Before we were married, me and Heidi built a fire on that spot and fucked while a crowd of drunken Mexicans across the river hooted and jeered derisively. That’s where the event will happen.
This is the definition of too much information. I replied that I don’t remember a conversation about “expressing a level of uncertainty”. He followed up with this:
You were talking about making plans and you said that it’s hard for you to make plans because you “don’t know what I’m going to do”. I don’t know if you’re starting to dread coming home because I may have hung myself while you’re at work. Weakness and poor impulse control aren’t fatal flaws but they aren’t really a problem for me. I always think about consequences, not just for me for for everyone else, too. I read somewhere that the children of suicides (and it probably holds true for other family members) are 50% more likely to kill themselves because the example has been set placing suicide in the “acceptable” column.
If I reach the point where I’m absolutely sure that there is nothing in store for me but unendurable pain and I’ll clock out but I want for everyone to know that there was nothing desperate or spur of the moment about it. I will have withstood all that a man can be expected to take, fought the good fight and I will retire from the field with honor and dignity intact.
Alrighty then…let’s just be blunt.
You would think that having a terminally ill family member would bring us closer. Circle the wagons, rally the troops? or not…
I knew this was going south when I got an email from my brother Wednesday morning-the subject line was “Unbridled loathing”
The email began
I just went off on Nancy and inadvertently gave that whole wing of the family exactly what they wanted.
Nancy being our younger, delicate sister. He ended with
Then she sent me another, slightly more wordy email that enumerated all of the things that she’s sad she’ll never be able to do with me. So I reminded her that I’m still alive. She also said that if I want to know Ma’s phone number I should google her.
So I suggested that she and the entire Aurora Gang go fuck themselves.
Well then…glad to see those charm school lessons paid off…
He summed our family up with this pearl of wisdom
We each need more than anything to sit down and discuss our differences, about 1,000 hours of couch time and about a 1,000 more hours of meditation. That’s just to avoid fucking suicide.
I couldn’t make this up