It's been a long time

I realized it had been a long time since last I posted an update when people started texting and Facebooking and emailing asking me how Vic was doing, but it's the fourth quarter at work, and if you know anything about me and my work, you know that means tons of overtime. Not only that, but starting around Thanksgiving, it's Scallion time, so whenever I'm not working at my office job, I'm working on The Scallion.

But we mailed The Scallion Wednesday, I updated The Scallion Blog Wednesday night, and now it's time for The Cancer Blog.

When last we met, Vic had just come home from the hospital after a bout of dehydration and pneumonia. He actually did quite well at home, and the fear I had that he was going home too early quickly dissipated.

Things were pretty quiet for the next few weeks, and in November Vic had another PET scan and a follow-up visit with the surgeon. I won't make you wait: the PET scan was clear. This is (obviously) great news. The surgeon, while happy with the results of the PET scan, was not happy with Vic at all for taking out the feeding tube. He is still really concerned about Vic's swallowing and the risk of aspirational pneumonia. We mentioned that he has had swallowing problems for 9 years and has only had aspirational pneumonia once, and now that we know the signs, we can watch for it and not let it get that far again.

This did not convince the doctor. Every time you get pneumonia, it weakens your lungs, and with Vic's overall health not being that great, it's a bigger risk for him. Eventually, he said, Vic might not be able to fight off a pneumonia. He said he wanted Vic to get the feeding tube put back in. Vic said he did not want to put the feeding tube back in. Sparring ensued.

Eventually Vic agreed to get another swallow study, and if that showed a continued problem with aspiration, Vic agreed to discuss it with the doctor again. Well, naturally, the swallow study did indicate a continued problem—although his swallowing had improved since the last one—and, naturally, the doctor said he wanted Vic to put in the feeding tube.

Vic had been thinking very hard about what he wanted. We told the doctor Vic was considering putting the tube back in and he would make a decision by the time he went back to see the other surgeon in December. We did ask for him to go ahead and send an order to get a feeding tube to our hospital up here so that if Vic decided to get one, he could get it rather quickly, and that's exactly what happened.

In the end, it was more an issue of how long it was taking Vic to eat during the day—it basically consumed his entire day—and how he was still not gaining any weight. Not only that, but when he doesn't feel well, it's much easier to just pop open a carton of tube food. He is now on about half tube food, half regular food (it's still important for him to keep swallowing real food).

At the beginning of December, we had an appointment with the oncologist. He's been gently prodding Vic to get a bone marrow biopsy because he has some funky protein levels in his blood (paraproteinemia). This is something our favorite Aurora nurse practitioner Katie first pointed out. It could be nothing, or it could be multiple myeloma, and if it's multiple myeloma, it could be something to treat (it's treatable), or it could be something to watch. That's why the oncologist hasn't pushed harder for the biopsy.

So Vic had been politely declining the oncologist's suggestion because he's tired of seeing doctors. At one point, we had appointments on four out of five days of the week—and sometimes, more than one appointment on one day. The oncologist understood this and, since he wasn't too concerned about the levels, accepted Vic's decision.

On the day we saw him (December 9), he once again suggested a biopsy (as we knew he would). Vic hesitated, and the oncologist said, "Let's just wait until after the holidays." He did want to do some bloodwork since it had been awhile—just to see how everything was going. I asked if he was going to check the platelets because I'd noticed some extra bruising, and last time that happened, Vic's platelets were abysmal (like, 100). The oncologist said if the platelets weren't good, he'd do the bone marrow biopsy on Friday. We did the blood test and went home.

Sure enough, a few hours later the oncologist called and invited us back. Vic's platelets were 37. Oops. So Vic had a bone marrow biopsy a week ago. We won't get the results until December 30.

Our wonderful medical assistant, Autumn.

 

Vic's bone marrow—too gross? Hope not.

Vic's favorite medical appointment are with his physical and occupational therapists. He loves them. They are very caring, but also they get him and his sense of humor. There's a lot of laughter and love in these sessions.

Jodi, Vic and Lisa

Aside from all of this, Vic is ... OK. His health really varies day to day, and he never knows how he's going to feel when he wakes up. Some days are better than others. Every day brings something different—not always good, but not always bad. So we are really living one day at a time.

As always, we appreciate all your good wishes and thoughts and prayers. We're so lucky to have our wonderful family and friends. 💖