The resurrection and re-archive of The Cancer Blog!

I started this blog post sometime after August 22 and envisioned it being a two-parter: one with some news, and one with the resolution of that news. Part 1 was finished, but I was waiting for one final detail. By the time I got that detail, there were medical appointments and loose-end tying and all sorts of other things to do, so I did not get part 1 out before part 2 was ready to be written. So I’ll just add part 2 to the bottom of this post. I am too lazy to retcon part 1 in the past tense, so just pretend you are reading it somewhere between August 22 and September 15. Thank you! 🤣

NOT ONLY THAT, but I also had a lot of people I wanted to tell personally before I sent out the blog post. Clearly, that did not happen. Sincere apologies if you are getting the news through this blog post, but thank you for your understanding. 💜

PART 1

“Why is Patty bringing back The Cancer Blog?” I hear you ask. Let’s see if you can guess:

a.      Vic’s ghost got cancer.

b.      Patty was not getting enough attention on her three other blogs.

c.      Patty has cancer.

d.      The Cancer Blog was feeling left out.

If you guessed (c)—and you should have, because (c) is always the correct answer—you are right!

Before I go too far into the weeds, though, I’m going to do the TL;DR:

I have phase 1 endometrial cancer. I am getting a hysterectomy on (or around) September 15, which should be all I need—no chemotherapy, no radiation. It has a 90% cure rate at this stage. I couldn’t be less worried, and you shouldn’t be, either.

But now I’m going to tell you more about it—which might be TMI, because it involves lady parts. If at any point you get uncomfortable, you already know that I expect everything to be fine. In fact, I’m guessing this blog will only be resurrected for two total posts—this one, and the one where I say, “I had the hysterectomy, and they didn’t find any more cancer in there.” So you can just skip to the bottom of this post, where I have an Important Message.

OK. You’re not skipping the details—that’s great! Because of how this all shook out for me, I want to talk about it so that it doesn’t shake out for you (or anyone you love) the same way. Here goes:

I started menopause around 50. As they do, my periods decreased in frequency and intensity (they were never that bad). But my bleeding never stopped completely, and I thought I was just still in menopause. (You are postmenopausal when you haven’t had a period for more than a year.) WE DO NOT TALK ABOUT MENOPAUSE ENOUGH, so I didn’t realize that active menopause shouldn’t last more than a few years. I did mention my bleeding to my primary care physician, but I downplayed my symptoms—it doesn’t happen that often, there’s not much bleeding, I don’t have any pain, etc.—so they did not see anything urgent about it and did not suggest that I do any additional testing to see if there was a problem.

In late April this year, I went to the zoo with my sister and brother-in-law as well as my niece (Margeaux) and her family. At the end of the night, Margeaux and I went to the bathroom together. Because I’m never sure about my bleeding, I wear a panty liner every day. I don’t really notice it most of the time, but I see it when I go to the bathroom, and it annoys me. I hadn’t bitched to Margeaux about it before, so I decided to whine. I yelled out to her from the bathroom stall, “I THOUGHT MENOPAUSE MEANT THAT THE MENO WOULD PAUSE!” And she said, “Uh, it does. Are you still bleeding??? Have you seen a doctor???” I told her about my PCP, and she said “You need to go to an OB/GYN. Now. Because you have a family history of endometrial cancer!”

This exchange with Margeaux was fortuitous happenstance number 1. What if I hadn’t decided to whine that night? What if Margeaux had responded with, “Yeah. Sucks to be a woman, doesn’t it? We bleed!”

So, with Margeaux’s concern ringing in my ears, I ask all my lady friends about their gynecologists—because at this point in my life, I DIDN’T EVEN HAVE AN OB/GYN! I had been seeing the nurse practitioner at my PCP for decades for all my lady business. I got what I hoped was a good OB/GYN recommendation and booked an appointment. The gynecologist was ... I won’t say alarmed, but definitely concerned. She was clear: menopause should not last a decade. (This was all taking place around the time I turned 62 this year, so around 12 years after I started menopause. She said menopause should only last a few years.)

Finding this gynecologist was fortuitous happenstance number 2. I’ve heard so. many. stories. about women who reported abnormal physical symptoms and were ignored or had their symptoms downplayed. Not my gynecologist. She took everything I said seriously and moved everything forward at an appropriate speed.

On my first appointment on May 6, she decided I should get a pelvic ultrasound (which is exactly as enjoyable as it sounds). I had the ultrasound on June 20 (it took a while to get scheduled). The ultrasound revealed fibroids and cysts in and around my uterus and ovaries—so much so that the ultrasound technician couldn’t even see the right ovary. Next step was a pelvic MRI, which I had on July 3. The pelvic MRI was most notable for the scrubs they let me wear home, so now I have a new Halloween costume.

Oh. I guess I should say that there were also notable medical findings: First, the MRI was able to visualize the right ovary, so that went off the plate as a concern. It noted that the fibroids appeared to be benign. But it also revealed that my endometrium was thick. And by “thick,” I mean thick. Normal thickness postmenopausal is around 5 mm. Mine was 20 mm. A thickened endometrium is a risk factor for cancer. So my gynecologist scheduled a hysteroscopy for August 22. Go up there with a camera, look around, take some tissue samples, check for cancer.

Assuming you read the TL;DR, you know the results of the hysteroscopy. [whisper]Cancer.[whisper]

The treatment for this cancer at this stage is a hysterectomy. Although they will take additional samples when they do the hysterectomy to see if there is any other cancer, they do not expect to find any, so the hysterectomy should be curative (meaning, no chemotherapy, no radiation). My gynecologist referred me to a gynecologic oncologist, whom I saw on Tuesday (September 2).

And this is my third fortuitous happenstance. This surgeon has been on paternity leave, so his schedule was fairly open. We got the consultation done quickly, and if I can get a CT scan in a timely manner, I will have surgery on September 15. The surgery will be done laparoscopically, and if everything is normal—which he expects it to be—the recovery will be swift. In fact, I should be home the same day! (The surgeon told me to prepare for eight weeks off work, but it could be less.)

My sister had this same procedure two years ago. She spent a week of her recovery with me, and she was fine. TIRED, but fine. I don’t see why my recovery will be any worse. I am not concerned in the least, and I am surrounded by caregivers, so I will not be lifting a finger throughout my recovery—except my yarn finger!

But as I said at the top, I have an Important Message, and this is it: If anything is happening to you or someone you love that seems like it’s not normal, go to the doctor! Or tell someone about it! Or do some research! Don’t downplay your symptoms! (When I told my new primary care physician that I thought I downplayed my symptoms, she made a note of that in my chart to help her be a better advocate for me.) Don’t let anyone else downplay your symptoms—especially if you know in your gut that something is wrong that aspirin or more sleep or whatever alternative is suggested won’t fix! Ask for a referral to a specialist if you are not offered one! And if someone you know mentions something casually that you think might be abnormal, gently recommend that they get it checked out. The day I got the cancer diagnosis, my very first thought was “What if I hadn’t made that offhand remark to Margeaux—and what if she hadn’t taken it seriously? I wouldn’t have discovered this cancer when it was still in its infancy and very easily treatable.

So although I have cancer, I come back to my default position of ... gratitude.

• So grateful my niece didn’t pooh-pooh me.
• So grateful my OB/GYN didn’t pooh-pooh me.
• So grateful for this nothingburger of a cancer. We all know how many other cancers would have worse outcomes or worst treatments or worse recoveries.
• So grateful my sister has been attending most of my visits with me. [Side note: What I’m most ungrateful for is not having Vic by my side as I face cancer—regardless of how much of a nothingburger it is. His first cancer was similar—tumor on the kidney, take out the kidney, you’re cured—but I was still there for him. 😂 ]
• So grateful for the outpouring of support I’ve already received and the support I know I’ll get from all of you. You remember what I like most, right? Pet and baby pictures and videos.

I always like to leave you with a picture, so this is the sunrise on the day of my hysteroscopy. I had to be at the hospital at 6:45 a.m. for that flippin’ procedure, and this is the only thing that made it worth it. That, and the fact that my procedure was right on time with a fresh medical team and I got out just in time for lunch. 

PART 2

As I expected and explicitly stated in Part 1, “I had the hysterectomy, and they didn’t find any more cancer in there.”

(NOTE: This part might have been a lot longer if I’d written it separate from part 1, but it’s already too long, so I’m just going to hit the highlights. 😁)

If you want a few more details, I can tell you that the tumor was 4 cm, grade 1, only 22% invasion—50% is where they start to be concerned. That the margins were clear. That they didn’t find anything wrong with the lymph nodes. That they didn’t find anything wrong with the ovaries. That I no longer have any of my internal lady parts, so no ovarian or cervical cancer in my future.

I can also tell you that I will have more frequent OB visits and more MRIs and CT scans for the next five years—just to be safe, not because they are concerned.

I can say that my recovery has been about as expected—lots of sleep and little action the first week, then just tired and sore at the end of the day since then. My support was also as expected—my sister took good care of me while she was here, and I got a lot of pet and baby pictures and videos as well as a fair number of nature pictures and videos, which were all lovely. (I continue to get pictures and videos from my dear family and friends, and every time I do, it’s a wonderful surprise.)

I am now in a cycle of work/rest/walk/work/rest/walk. I sit at my desk for about three hours a day—but not all at once. I work for about an hour, then I take a rest or go for a walk. Sometimes Bella lets me take her on a longish walk, sometimes not, and then I put her in the house and go around the block.

I received some DoorDash gift cards, so I have had some food delivered, and I received other donations for food. I’ve also had friends and family bring food or have it delivered—some restaurant food, some homemade, all yummy. So I have not done much cooking in the last couple of weeks, nor do I expect to do much in the coming weeks.

I’m not doing many of my other chores, either. One of my neighbors takes my trash out on trash day, my sister-in-law Alice is taking me to the grocery store today—I even had someone volunteer to pick up Bella’s poop in the back yard!

I received some flowers, and these brighten my day (they are all inexplicably still alive)—both because they are beautiful and because that’s something Vic might have done. 💖

As usual, it has been an embarrassment of riches, and I have no reason to complain about anything. (Not that I haven’t done my fair share of whining: “My incision itches! I’m hot! I’m cold! I can’t get comfortable! I’m not sleeping well!”) I am lucky my cancer was found early, that it required a relatively small amount of treatment for a short amount of time, that I have short-term disability at work so I can continue taking the time I need to recover while still getting paid, and especially that I have family and friends who have been so so so very supportive during this whole process.

Thank you, from the bottom of my heart.

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.)

#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. 💗

#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. 💗

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!

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. 💖

Hey, it's good to be back home again

TL;DR: Vic's kidney function returned to normal and we came home Friday.

Full story: Well, we made it through that.

After lots of fluids and antibiotics and tweaking medications, Vic's creatinine went down to 1.75 and he was deemed fit to be discharged.

As always the best part of Vic's hospital stay was this:

Georgie, the therapy dog. He visited twice. Because #dogsarethebestmedicine

It's still a long road. I would have liked to see him stay one more day to get a little stronger and to get a little more mentally "there." Without the tube, Vic really has to focus on his calories and his hydration—and he also has to get exercise to avoid a repeat of this week's pneumonia while staying oxygenated, which seems to have become a bigger problem than it was before.

Fortunately, we have a pretty awesome oncologist—he's so Zen. Now, if something is wrong, he'll make sure it gets addressed stat (I can use that word because of my extensive medical-TV-show-watching experience), but otherwise, he is the calming voice of reason. So while I was uncharacteristically panicking—"WHAT IF HE GOES HOME AND DOESN'T EAT ENOUGH OR DRINK ENOUGH OR EXERCISE OR WHATEVER????"—he's all, "Meh, what's the worst thing that can happen? He doesn't eat, he doesn't drink, he comes back here, and I order a feeding tube. Problem solved." It was such a "duh" moment for me. It's not like he'll die at home, because I'm there. If he goes south again, obviously I'll just take him back.

The oncologist then said all this to Vic, ending with "It's all up to you, buddy." He might not have said "buddy," but I think he wanted to. I think Vic understood what he was saying, but with his mental state, I'm just not sure. I asked him several times before we went home, "Do you understand what you need to do to stay home?" And he said yes, but when I asked him what he needed to do, he just didn't answer me. It's really maddening, but then I can't really be mad, because his brain isn't working right yet.

And deep in the recesses our our minds, there's still the nagging "Why didn't they give us the option of "wait and see"? Wait a few months for a PET scan and see whether there is still cancer there? Since there was no cancer in the tongue they removed, the PET scan would have been clear, and we could have avoided all of this. I know, I know—hindsight is 20/20, but we weren't even offered that option. Maybe there is a tiny cancer cell in the part of the tongue they removed, and maybe it would have grown while we were waiting, but it seems unlikely that in three months, it would have grown enough to require the removal of more than half the tongue.

We have been told that we're not supposed to think that way—it will drive us crazy. But it's hard. Dr. Song said he was committed to Vic's quality of life, but so far, it eludes him. And I know—it's only been two months. This is a year-long recovery. But it's hard.

OK, that's as dark as I want to go. You know I like to be the picture of positivity, strength and resilience. So as always, I'll leave you with something positive: a Bella video. I went home from the hospital for dinner on Thursday. Bella hadn't had a walk since Monday. I did not want to take her for a walk. It was cold. It had snowed that day. I had a cold. I was tired. But my step-sister-in-law had reminded me months ago that exercise is essential to maintain your well-being when all around you is crashing down, so I thought if I took a video of Bella getting ready to go on her walk and sent it to Vic, it would make me happier to do it. It did, and the walk was restorative. (Thanks, Amy.)

I've had a lot of people sending thoughts and prayers through the blog, texts, email and Facebook; offering to do things for me; reminding me to take care of myself; and putting those validating "likes" on my Facebook posts. I have a whole "gratitude" blog post coming, but until I have the energy to get it up, let me just say "thank you" here. I'm so lucky to have such a wide-ranging support group. 💗