Saturday, August 1, 2020

A year in the life

One year ago today, I was sitting in a hospital waiting room with my sister and my sister-in-law while Vic lost half of his tongue to cancer. I'm not going to say that my day was harder than his, but I will point out that he was asleep for most of the day, so ...

The past year has not been one of our finest. The pneumonias. The fall. The saga of the feeding tube. COVID-19 (the pandemic, not that either of us has it). The unspecified blood disorder.
I don't want to make this a super long blog post, so I'll just say this about the unspecified blood disorder: We still don't know exactly what it is. He did get a treatment for lymphoma that helped with the pesky platelet problem but didn't clear up the pesky protein problem. The oncologist consulted his homeys from MD Anderson Cancer Center, and they were all, "Meh, we don't know." (My words.) So Vic continues to get bloodwork and a visit with the oncologist once a month to make sure things aren't going south.
And yet.

When I asked Vic today about his quality of life, he said it was good. Given everything that I mentioned in the second paragraph, he has every right to feel that his quality of life sucks, but he doesn't. He can still take pictures and has been trying to do more of that. Even if we don't leave the house, we can see beautiful sunsets; the moon, the five bright planets and a comet; and hummingbird visitors—all from our house. He planted pumpkins and cucumbers and cantaloupe and watermelon in the garden. We have a boat load of pumpkins and three pickle-sized cucumbers so far. (Still no melons, but 50-50 isn't bad.) He continues to take care of all our critters—domestic and wild. Bella continues to be an unending source of happiness. We are celebrating our 32nd anniversary in a little more than a week. He has more or less recovered from last year's surgery. Even his heart seems to be a little happier: his ejection fraction is 53% (it has, from time to time, hovered in the teens, so 53% is outstanding).

Things could be worse.

This could be a much longer post with more about the unspecified blood disorder and the NotChemo he had for his lymphoma and everything that's happened since I last posted in February, but I'd rather just leave you with a bunch of pictures. 😃

SPOILER ALERT: There are some pretty gruesome pictures at the bottom. Vic wanted to post some of the pictures I took of him just after surgery, and they are not for the faint of heart. But I took some pictures of the same areas today, and I think that seeing how far he's come is pretty neat!

I'll start with fun pictures!


Last night's sunset—it was gorgeous!
A broad-tailed hummingbird visiting our bee balm
The Moon (no kidding!)
Comet NEOWISE
The pumpkin patch (and the rest of the garden) from above

One of the pickle-sized cucumbers

The melon-sized pumpkin (it's the biggest one)
Miss Bella
(I couldn't attach a video--Blogger said I'd exceeded my maximum size. The nerve.)
Good mask-wearing citizens
Vic getting NotChemo for his lymphoma. During a pandemic.
BUT, a nice new quilt from his sister Alice!

NotChemo, Day 2. Back to the tried and true quilt
from Chris and Larry Pennel.
(Sorry, Jeannie Peppel, your blanket belongs to Miss Bella now!)

I'll sign off now so those of you who don't want to look at the gruesome pictures don't have to scroll to the end to see if there's anything else.

I once again want to thank all of you for your unwavering support. I am strong for you; I am strong because of you. 💜


And now, on with the gruesome part! (Although, now that I made them a little smaller, I don't think they're quite so gruesome.)







Sunday, February 9, 2020

#hospitalfreeFebruary3-7 FTW!

So I realize that I don't post a ton of good news on this blog, and I also realize that I write really long posts, so this is just going to be short and sweet.

First, it looks like lowering expectations is the way to go—Vic stayed out of the hospital all week! He's also been feeling a teeny bit better every day, so we're happy about that.

This week he has a lymph node biopsy—just the last step in trying to figure out why his white blood cells are misbehaving. His doctors don't seem to think anything will come of this, so I am not worrying. (Plus, the pesky platelets aren't so pesky, so that's more good news!)

I'll keep you posted on the biopsy if there's anything to report.

Until then, I leave you with Bella, the wonder dog. She is lying on a blanket that my sister's dear friend Jeannie made for Vic. He had loaned it to me one night because I was feeling chilly, and when I got up for something, I left it on the couch. I came back to find Bella lying on it, which is interesting, because she does not sit on our couch much. She might come up for a few minutes, but when that blanket is there, she stays with me all night long. It's pretty sweet. I hope Jeannie doesn't mind, but really, the fact that it keeps Bella near makes the blanket even more special to us. 💗


Sunday, February 2, 2020

#hospitalfree2020 succumbs to pneumonia

That's right, gentle readers, #hospitalfree2020 didn't even last four weeks.

TL;DR: Vic got pneumonia, spent four days in the hospital. Biopsy results are partially in: it isn't multiple myeloma or a few other things, but not sure what it is. Vic fell down the stairs unharmed.

Here's how the first four weeks of our year have gone:

I got a cold. It was that nasty cold that's going around that made me feel crappy for more than a week and gave me a cough that is still annoying me. I only work in the office twice a week, and I don't think I went to the office for the first time this year until the 16th.

Vic got a cold. Probably mine—after all, when you live in the same house as a sickie, you often get sick yourself. This cold made him feel crappy and gave him a nasty cough.

On the 6th, we saw the oncologist about the bone marrow biopsy. Basically, Vic has a plasma cell population that is causing the oncologist concern, because plasma cells can become cancerous. The good news from this visit was that Vic does not have multiple myeloma. Although it is treatable, it's still not something you want to have. It could be a lymphoma, but more testing is needed. The oncologist wanted us to taper down the prednisone Vic was taking for his pesky platelet problem and scheduled another appointment in three weeks.

On the 17th, Vic came in to my home office. As he was talking to me, I noticed that he had something on his lower front tooth, like when you eat a salad and you have a bit of lettuce covering your tooth. Except it was 10 a.m., and he hadn't had anything to eat yet that day. When he pulled down his lip, I noticed that his tooth was gone. Just gone. Snapped off at the base. Still don't know where it went. Fortunately, we were able to get an appointment with his dentist right away. Interestingly, the dentist made him a new tooth. Just made him a tooth. You can hardly even tell that it's a new tooth! (Special thanks to Dr. Bob Ahern, who treats Vic like family.)


Back to Vic's cold. When Vic gets sick, he tends to miss meals and drink fewer fluids. This makes him weak and dehydrated, and he gets sicker. His body hates him (that's the only reason I can think of for his body treating him so badly after a lifetime of more or less healthy living [I'll ignore the years he was overweight because people in glass houses shouldn't throw stones]), so getting sicker often means pneumonia.

One of the signs of pneumonia is pleurisy. "What is pleurisy," you ask? Well, your lungs are surrounded by pleura, which cushion the lungs and reduce friction between the lungs, ribs and chest. When the pleura get inflamed, you can feel it in your back. Here's a handy graphic for those of you who wish you knew more:

So as Vic got sicker, his back started hurting, and we both know now that this is a sign to get to the doctor, which we did, on the 23rd. The doctor prescribed strong antibiotics and a chest X-ray, so we toddled on over to the hospital for the X-ray and then toddled on over to the pharmacy for the antibiotics. The doctor called back and said the X-ray didn't show any signs of pneumonia, so that was good—or so we thought.

Vic spent most of the next few days sleeping. I gave him tube food every time he got up and tried to keep him hydrated, but it's just an uphill battle for both of us.

On the 27th, we went to the oncologist for those bone marrow biopsy results. In addition to his abormal white blood cells not being multiple myeloma, they're also not lymphoplasmacytic lymphoma and they're not waldenstrom macroglobulinemia (another kind of lymphoma). He said (I'm paraphrasing), "We could do a lymph node biopsy because you may have a low-grade lymphoma, but since it doesn't seem to be causing you trouble, we're not going to worry about that right now. Instead, I'd like to focus on this thing you got going on right now." He could see that Vic was not feeling well at all. In addition to Vic just looking awful, his vital signs were also awful: low blood pressure, low oxygen level, low-grade fever—all the lows. He suggested a chest CT scan, and he suggested a hospital admission, and that's how #hospitalfree2020 came to an end.

He spent four days in the hospital getting antibiotics, fluids and a constant stream of tube food as well as some visitors:


Visitors like this are always the highlight of Vic's hospital stays.


On the second day, he walked six laps around the ward, but that really set him back. He was super tired that night and all the next day, although that night, we did take a walk to the aquarium, another highlight of a hospital stay:



Thursday, we had a different set of visitors:


I thought they visited because there is a pediatric wing on the fifth floor, but they said no, they visit all the floors. They told some really bad jokes, but they were super into being clowns, and they made us both smile.

The pulmonologist said he thought Vic should stay another day (to Friday) to get more of the high-test antibiotics, but by the end of the day, he apparently changed his mind because our GP came over and said he could go home if he wanted. If I'd been there (I had actually just left to go home to walk Bella), I'd have emphatically said I did not think he should go home yet—he was still pretty weak and it seemed like one more day of fluids, antibiotics and tube food would have been helpful—but I wasn't, so discharged he was. I picked him up and we went home, and he was very happy.



The next morning felt like the night before Christmas: Out in the hall there arose such a clatter, I sprang from my bed to see what was the matter. When what to my wondering eyes should appear but—and here's where we digress from the poem—my husband sprawled motionless at the bottom of the stairs! I flew down the stairs, where I was greeted with a perfectly clear, perfectly calm, "I'm OK." So of course, I instantly burst into tears. (My go-to response to stress, anger and commercials featuring the Budweiser Clydesdales.) He didn't feel like anything was injured—and I didn't see any blood from open wounds—but we still made haste to the doctor's office.

The nurse practitioner made a concussion assessment (verdict: not a concussion), did a check of his head and neck and spine, and asked him where it hurt (his hand was the only thing that was painful). She prescribed a muscle relaxant and some nice Vicodin, saying, "You're gonna need these tomorrow," and ordered an X-ray for his hand (verdict: nothing broken there). She said he could get a head CT and asked whether he wanted one.

I immediately recounted how Derek Shepherd died because he had a subdural hematoma that went undiagnosed because he was at a crappy hospital instead of Grey Sloan and they didn't give him a head CT, and then I said, "So all I'm saying is this—I am Meredith Grey, and Vic is my Derek Shepherd, and I cannot lose him. So if you can assure me that he does not have a subdural hematoma, then I agree we should wait to get the head CT." This made her laugh—which was my intent—but let's face it, I WAS NOT KIDDING. ;-) She then said that if it were her own family member, she would advise them to wait. Since Vic only had a small bump on his head and hadn't actually gotten t-boned like Derek Shepherd, I felt comfortable with that decision. (If you do not watch Grey's Anatomy, the preceding paragraph will sound like a foreign language to you.)

For those who would like to see his head, here it is:

This is probably where he hit one of the posts on the stairs.
This is probably a little rug burn. Thank goodness we keep an area rug at the bottom of the stairs!
Which brings us to today. He is doing OK from the fall and seems to be recovering from the pneumonia. So maybe I was too aggressive with my hashtag for the year. My new hashtag: #hospitalfreeFebruary3-7. Let's see how that goes.

And finally, what is a blog post without a Bella video? I couldn't decide whether to use the video I took for him (while he was in the hospital) or the video I took of him (after he came home), so I'm just using both. I mean, really, if one Bella video is good, aren't two Bella videos better?



Thank you, as always, for your continued thoughts, prayers, good wishes, etc. They are deeply appreciated and meaningful. 💗

Wednesday, January 1, 2020

Never tempt fate

Maybe I should have left well enough alone. I went more than two months without a post and we maintained the status quo. I write one lousy post and BOOM! A week later, Vic ends up in the hospital.

As I mentioned in the last post, he's never sure how he's going to feel when he wakes up. What I didn't mention was that every day that he doesn't feel well seems to be a different cause—gastric distress, low energy, dizziness or, my favorite, coughing up blood.
Everyone knows that in the movies, when someone coughs and then takes the hankie away and there's blood on it, that person is dead by the end of the movie. So I always want to go straight to the emergency room. Vic likes to take a wait-and-see approach, and in this case (the week before Christmas), his coughing spell didn't last long, so we went on about our merry way.

Two days later, we had an appointment with the reconstruction surgeon, and we mentioned it. She definitely wanted him to follow up with the oncologist, who has kind of become our primary care physician. He did some bloodwork, didn't see anything concerning (aside from the pesky platelet problem, for which Vic is taking prednisone), and again we went on about our merry way.

The great thing about prednisone is that it gives Vic a lot of energy, so this has been a pretty good week. We had three Christmases—a prime rib dinner on Christmas Eve with Vic's family hosted by one of Vic's sisters; an Italian-themed Christmas dinner, again with Vic's family but hosted by Vic's other sister; and a Boxing Day brunch hosted by me with my family.

Christmas Eve, L to R: Brother-in-law Rick, Rick's brother Gary, sister Patty,
nephew Nick, great niece GiGi, great niece Zoe (head turned away),
brother-in-law Ed, niece Lisa's nose, Patty; not pictured: sister/hostess Alice,
who was feeling a bit under the weather and was resting


Christmas, L to R: Brother-in-law Rick, niece Lisa, great niece GiGi, great niece
Zoe (you can't see her behind GiGi, but trust me, she's there), sister Patty

Boxing Day, L to R: Patty, sister Laura, great niece Madi,
great niece Fin (under the table), great nephew Will, nephew Xan,
niece Margeaux, brother-in-law Bill, Mom
It was such a lovely week, and we really enjoyed spending all this time with our family.

But lurking beneath the surface was (dun dun dun) aspiration pneumonia. One of the cancer gifts that keeps on giving is Vic's inability to swallow well. He's been doing OK (not great) for the past nine years, but this new tongue situation has compromised his swallowing even more. What happens is that food and liquids go down the wrong pipe and into his lungs. If he coughs a lot, he can get that stuff back up and out of there—but it still goes there, and with Vic's other ailments, his body has a harder time fighting these things off.

That's how we found ourselves in the wee hours of Sunday morning in the emergency room, where he got a chest X-ray that showed a pretty good-sized pneumonia and earned him an E ticket (you Millies might call it a Fastpass) straight to the hospital.

The antibiotics you get in the hospital are industrial strength, so even by the end of the day Sunday, he was feeling much better.



Unfortunately, they made him stay two more days, and we came home Tuesday afternoon. Glass half full: He didn't have to wake up in 2020 in the hospital. We're really voting for a no-hospital 2020.

Also unfortunately, because he was in the hospital, we didn't get the results from the bone marrow biopsy. (I did stop by the oncologist's office, and we probably wouldn't have gotten them Monday anyway because they had to send away for more tests. We are now scheduled to receive the results of the biopsy on January 6. Watch this space for that scintillating news!

To cap off this post, I will end as I often do, with a video of Bella. This one, she's getting a Greenie. She's much more animated when Vic is giving her the Greenie, but since he wasn't home, I took this video to show him I was taking care of his chores while he was away. 😄


Happy new year, everyone!