Hanging on to normal
August 18
We aren’t saying the word “cancer” yet. We’re saying things like “If this turns out to be something serious…” But we know that cancer is a real possibility.
About a week ago, my husband went to our local small-town clinic because a pain in his shoulder blade had gotten worse. He had a 1 p.m. appointment, and when I got home from work at about 5:00, I assumed his appointment went fine and that he was at work. (He works a swing shift and normally goes in about the time I get home.) A half-hour later, he pulled into the driveway. He’d been at the clinic and adjoining hospital for more than four hours. An x-ray showed a spot on one of his lungs and this discovery prompted numerous more tests; blood work, CT scan, etc. He went back the following day for more of the same. I am not even sure what all was done. I don’t think he knows either.
(Googling shoulder blade pain and spot on lung produces some scary results!)
Today we went to the “big city” Cancer Institute 100 miles away, in Sioux Falls, S.D. for a PET scan.
My husband is 64 and has smoked for about 45 years. There is also a family history of cancer. Maybe the doctors are just being extra cautious, but it’s a real worry.
On the drive to his appointment, It kept going through my mind that today could be our last “normal” day. We’re still living in the B.C, days. (Before cancer diagnosis)
We were running ahead of schedule and had to use a restroom, so we stopped at a roadside rest off the Interstate, used the facilities and sat at a picnic table for a while. (Yeah, he had a cigarette, but I gave up bitching about it a long time ago.) He’s going to do what he’s going to do.
There were posters at the rest stop advertising the South Dakota Badlands, a popular tourist destination. I said I was going to take a picture of “the Badlands” and we could pretend we were on vacation. Silly? Yeah, maybe. But, God, I don’t know how to act.
Stepping into the actual “Cancer Institute,” was a bit daunting. I kept myself together. A tear or two escaped, but I haven’t completely lost it ~ yet. I don’t think he noticed my tears, and I haven’t seen any from him.
It’s a nice place, pretty and inviting. A volunteer at the front desk likely recognized that this was our first visit and walked with us, even riding the elevator, to where we needed to go.
When Neil was having his scan and I was in the CT-PET waiting room, a man and woman arrived for an appointment. A beautiful, brown-skinned couple with accents that I couldn’t quite place. The man was bald and very thin. I saw he had a port implanted just below his collar bone. They seemed well acquainted with the staff. Someone brought him two bottles of liquid to drink prior to his tests. They discussed the fact that the liquid was very cold. He joked with her that he would prefer it was room temperature but he would do what was required. “This is too cold for me, I’m from the tropics!” he exclaimed. He took down his mask to drink. From expression on his face, it apparently tasted terrible, and he was supposed to chug this crap down in short order. But when I asked him if it was “yummy” he looked at me with a wide smile and shook his head no. I wonder why, with all the things modern medicine can do, why they can’t make something like this more palatable?
Soon after, Neil was brought out from the back and I wished the strangers luck as we left the area. (Again, he shot me that incredible smile!)
It’s strange but this man, someone I have never met, and the apparent seriousness of his situation seemed to affect me more than anything has this past week. When someone is very ill, it’s hard to judge their age, but he looked like he must have been quite a bit younger than us. I may have wondered if I might be getting a glimpse into our future.
Since Neil was “radioactive” and was supposed to avoid being around pregnant women and children for six hours, we did not go “out” for a meal after his appointment, but I ran into a Subway and got sandwiches to go. We headed out of the city and took the back roads home. The Interstate is nice for getting somewhere faster, but when you want to unwind a little, taking an alternate route for at least part of the way home is nice.
We stopped at a small park outside one of the smaller towns to eat our takeout lunch, still acting like we were having a nice “vacation” day. While sitting in the warm sunshine, Neil said that even if this does turn out to be “something serious,” he didn’t think it would be “that big of a deal.” (His words) He said, he’s lived his life and went on to mention a young woman from the neighboring town who has been diagnosed with advanced cancer. Hers has spread and she does not have a promising prognoses. She also has a daughter who is about 20 and a young son with multiple special needs.
“Now, that’s terrible. What about that little boy?” he asked, pointing out that our kids (and grandkids) are all grown up. I do understand where he was coming from. At least we are past middle age. But that is so much like Neil, always thinking about someone else.
And as of right now, we haven’t had that life-changing diagnosis. And maybe we won’t. Maybe that spot is nothing. A doctor has not looked him in the eye and said “You have cancer.” But, damn, with all these tests, they must suspect something.
We won’t know any more until a visit next week with an oncologist. Even then we may not learn a lot. It sounds like next Tuesday’s visit might be to see if they want to schedule a biopsy. So we are still living in the “B.C.” days, trying to hang on to normal.
Aug. 24
We met with the oncologist for the first time. She said there are a lot of bright spots on the PET scan. She asked if we wanted to see a picture of it. He said no, so we didn’t. I am a visual learner and I did want to see it. (But these decisions are his and I have to respect that.) So she explained the best she could without the visual aids. She thinks this likely indicates lung cancer that has spread ~ to lymph nodes, ribs, adrenal glands, collarbone, sternum, pelvic bone and jawbone. BUT it might be something else, an infection perhaps. But she doesn’t think so. A lung biopsy is scheduled for September 1, along with a head CT. She prefers an MRI, but Neil won’t do that. He has terrible claustrophobia. We won’t know the results for another week. Then we decide where to go from there. I hear the horror stories of people who can no longer eat because radiation burned their esophagus, (A co-worker’s father pretty much starved to death following his cancer treatment because he could not eat and the family opted out of giving him a feeding tube.) I’m sure he would have lived longer without the treatment he received. There are people who suffer dementia following cancer treatments (My father-in-law). We think of how sometimes the treatments are worse than the disease. He may opt to not go through that. We are trying to not get ahead of ourselves here. I know Neil well enough to know he probably wishes he had never gone to the doctor for that damn shoulder. Then there is Neil’s sister, who was first diagnosed with a melanoma, that eventually spread and killed her, BUT she fought it for nine years, was able to keep working, saw her first grandchild and took dream trip with her husband. She was a lot younger than he is now. But she fought it.
Sept 31-Oct. 1
The lung biopsy and head CT were scheduled for Oct. 1 (it was last Wednesday) and we had a motel room booked for the 31st and 1st, since it was an early morning appointment and we were to stay in town for 24 hours after the biopsy in case of complications. I got home from work Tuesday with the intention that we would drive to Sioux Falls that evening. He met me outside and said never mind, we are not going. He had canceled the appointment. He was smiling and I thought he was joking. He was NOT. He was so stressed about this procedure, he had decided he was not going to do it. I said, “You aren’t serious?” and realized he was. He reminded me that I had said I would support whatever decision he made regarding treatment. Well, yeah…but we have to know what we are dealing with first! I had left work a half hour early and I called to let them know I would be in tomorrow after all. Our younger son had already taken a partial day off of work to drive over to our town, feed and check on the dogs. (They are little Shih Tzu crosses who use inside potty pads….which is kinda gross sometimes, but that’s another subject.)
I was frustrated at this point. Other people had rearranged their schedules to accommodate us. (Actually, I was pissed off.) I was getting ready to call and cancel the motel and crack open a beer or three when his phone rang. It was the oncologist’s nurse asking that he reconsider and that the doc would like to talk to us EARLY the next morning at the cancer institute before we were due to check into the hospital. He reluctantly agreed. So I texted a co-worker back and let her know it was back on.
I have to say, I LOVE his oncologist. She did not try to make him feel bad for his anxiety. (That would have backfired anyway. He’d have said F this BS.) But she also explained that we need to diagnose the problem and then decide where to go from there. He said he would go through with it. There have been so many advances in cancer treatments. If it is cancer, there may be treatment options other than traditional chemo and radiation. I am extremely worried about what might happen with chemo knocking out his immune system in the middle of a pandemic, so if there are other options that would be great. How do I live with myself if I talk him into chemo and he gets Covid and that’s what kills him?
We left the doc appointment without a minute to spare and got over to the hospital for the procedure. It was a game of hurry up and wait as we were back in the little cubby waiting and waiting…and waiting! It sounded like there was an emergency that tied up an OR, so everyone back in their little curtained cubbies waited longer than anticipated. He actually slept on and off while waiting, but the wait didn’t help his stress level.
He actually was in a very good mood when they brought him back to his cubby. I think maybe he had some good drugs.
We had to wait a couple hours and make sure the lung didn’t collapse or anything. While waiting, I heard an old guy across the hall on the phone with a family member who was coming to pick him up. He’d had to wait for his procedure as well and was getting impatient. I heard him say, “What a fucking day!” I silently agreed.
We went back to the motel after he was discharged. I love that the motel has heavy curtains, that you can draw in the middle of the afternoon and get some much needed sleep. We both napped for a couple hours. (Until my damn phone rang) A friend with good intentions who was checking in with us. It was early afternoon, but time of day means nothing when you have something like this going on.
Later, I went outside to get a little air and I noticed a family getting out of their vehicle in the motel parking lot. It was the same couple I had noticed in the waiting room the day he went for the PET scan. This time they had a couple of kids with them. I have a feeling we are going to be crossing paths again. I should find out their names.
My sister lives part time in Sioux Falls. She brought us take-out food from Arby’s for supper, which was very nice. We sure didn’t feel like going out anywhere to eat and I was hungry. (He wasn’t that hungry but really needed to eat.) The chocolate milkshake was a big hit, and I am filing this away for future reference if there comes a time when he has no appetite. You can sneak all kinds of nutrients into a milkshake.
I am beyond frustrated that our backward governor has done everything she can to block medical marijuana after the voters passed it by more than 70 percent. Not that I would look at this as a cure , but it might help with symptoms, like the damn anxiety! We might have to ask the doc what she can prescribe to help with that. It’s just too bad that it is going to be money in the pocket of big pharma, who, in turn support crooked politicians like Kristi Noem) when people should be allowed to grow their own damn plant in their own backyard!
