The Wonder Whiner update -vl

Hello, everyone! Wonder Whiner here! (Patty got a superhero name, so I thought I needed one, too.)

I voted for Captain Ameriwhine, but I was voted down. —PL

Here are a couple of cute pictures of beloved foster dog Fiona. She was very shy. Remember how cute she is while you're reading the rest of this blog post. You'll need it.

Next, I just want to say thanks for your support and telling me your own tales of crap you've endured. I'm with you 100 percent. Go, team!

Before I regale you with my fabled medical history, let me tell you what scares me to death. When I was get getting radiation and chemotherapy for my last cancer, I was in the waiting room (waiting, strangely enough). I saw a lady being pushed out in a wheelchair. She looked like she was completely unaware of what was going on—she was mostly just a lump. I decided I was not going to end up like that, but it seems that little by little, fate is pushing me in that direction. Every day, I feel like I'm waiting for the other shoe to drop, and an octopus is wearing the shoes.

First shoe: I felt heart attacky, so I went to the hospital. They ran some tests, didn't find anything wrong. But I still felt bad. OK, they said, let's do an ultrasound and get rid of this bozo. Bob, the ultrasound technician, worked hard, and Bob (we still whisper his name) found a shadow. The shadow turned out to be a tumor the size of a baseball on my kidney. Boy, that got stuff started. Three days later, the doctor removed my kidney. The diagnosis: Renal cell carcinoma. If it is encapsulated, we're good. If not, you're dead. Result: You're good. You just have to be careful about things that affect your kidney. (Clunk)

"Clunk" is the sound of a shoe dropping, which you probably figured out. -PL

Next shoe: I had some chest pain after playing tennis. I couldn't even walk uphill without pain. Diagnosis: Coronary artery disease. You need a stent on the widowmaker. If you had had a heart attack, you'd be dead. As it was, you had a heart incident, so you're good. You just have to take a few meds. (Clunk)

Next shoe: Went to an iPod class with Patty. Collapsed ... even shut down the iPod store. Died for 20 minutes in the hospital. At least, that's what they tell me. Beats me. I don't remember anything until I got home two weeks later. Diagnosis: Ventricular tachycardia. Defibrillator implanted. Result: You have to take more meds and have more doctor visits. (Clunk)

Next shoe: I had this funny feeling at the base of my tongue. "I think my uvula has grown." Went to a plethora of doctors. (How many is a plethora?) No one could find anything. Later, when I started bleeding from my throat, my otolaryngologist drove a tractor down my throat and said, "Aha! Cancer! Let's get this going immediately." Treatment: Radiation and chemotherapy for seven weeks. "We have to be especially careful because of your defibrillator."  (Clunk) Result: After five years it's for sure gone. I came! I saw! I kicked its ass! 

Next shoe: Someone hit me in the chest with a baseball bat. "Wonder what that is," I said. "Wait, maybe it's my defibrillator." Yep! Then follows a couple of years trying to fix my heart, including three ablations and implanting a pacemaker. So now I'm running completely on batteries, taking myriad meds at exact times, and my heart—even though it is working—isn't working that well. (Clunk)

Last shoe, for now: I was having pain under my tongue when I ate spicy food. Doctor says, "OK, I can't see anything, but let's try some meds." Nothing seemed to get rid of the thing completely. It got better and then worse. Finally, doctor says, "We have one other thing, but just to be safe, let's run a biopsy. It doesn't act like cancer." [One day later] Doctor: "It's cancer." Me: "Damn!!!! Is it back?" Doctor: "No. This is a new one!" [one week later] Surgeon: "We need to do surgery, and we won't know how bad it is until you're under. If we could run an MRI, we could tell exactly. Too bad you have a pacemaker. We can't do MRIs with that." (Clunk)

I'm turning into a house plant, and I'm not happy about it.

Love to all of you.

Wonder Whiner out

The fun update

Just do you know, it's not all doom and gloom over here at the Love Shack.

Last week, Vic's son, Bryan, and his family came for a visit, and we did a lot of fun things together!

We had a little swimming party at my mom's pool.
That's Vic's sister, Patty, sitting on the edge; our grandson,
Brady, crouching on the other side; and my mom waaay
in the back. Then in the pool, L to R, our great niece,
GiGi; our niece, Lisa; our great niece, Zoe; Bryan; our
granddaughter, Katy; our grandson, Ryan; and me!

And this is Katy and me on our pool noodles. P.S. Pool noodles. Great invention.

We also went to a Rockies game, where Vic's sister, Alice, got a suite for the day. It. Was. Awesome. Such a great way to experience a game as a group. We got to meet Dinger, the Rockies' mascot.

L to R: Zoe, Lisa, Patty, Brady, GiGi, Katie, Alice, me, and Bryan's wife, Liz.

And bonus—the Rockies won! It was great to be able to spend so much time with the whole family, but especially Bryan, Liz, Brady, Katy, and Ryan, who we haven't seen in quite a while.

Now, I want to write a disclaimer here. Vic did not get cancer so people would give him gifts, and this is not an advertisement for more gifts, but Vic has been getting some gifts because he has cancer. 😉

And they're all pretty cool gifts, so I want to showcase them here and give credit where credit is due.

We start with tayberry jam from our friend GerRee. GerRee has been making jam for Vic for, I wanna say, a decade. (And no, she is not making jam for Vic. She is making jam, and Vic gets some. But it still feels like she is making jam for Vic.) The tayberry jam is the most coveted of all the jam GerRee makes, and she gave him not a small jar, not a medium jar, not even a just large jar. She gave him the last jar of tayberry jam in her stores. (And it happened to be a large jar, so, cool.)

Next we have a quilt from our friends Chris and Larry. Chris made this quilt herself (as a math teacher, she has all the maths needed to create a perfect quilt) just for Vic. We are really touched by her generosity—and impressed by her skill. This quilt is gorgeous on one side and just soft and squishy on the other. It's perfect. Vic is cold a lot (he has no fat on his body and he is not going through menopause, unlike "some" people), so this quilt will get used a lot.

Then today, we had lunch with my friend Linda, who made Vic the cutest amigurumi dog and heart. She knows Wags can't be with him physically (especially in the hospital, where he probably shouldn't take her ashes 😂) and was hoping this little puppy—made with love for Love—could help a little. Add to that a hilarious card and wrap it all up in a Superman bag (she is convinced that he is a Man of Steel, given all the challenges he's surmounted in the past), and you have this:

There really are no words to say how grateful we are for not just these gifts but also the cards that we've received and the multitudes of well wishes. I do hate to sound like a broken record, but we really have the best family and friends in all the universe. ❤️

The boring update

It's been awhile since I posted an update, so I thought I'd post a "quick" one (or two) (or three) today.

This will be the informational (a.k.a. boring) post.

Since our last "conversation," Vic has had several medical appointments:

Dr. Maymani
This is the best part of the story. You may remember that Dr. Maymani prescribed a short course of steroids to see if that would help bring Vic's platelets up. Well lo and behold, it worked! His first blood test had a platelet count of 187. And while the platelets were down a bit on his second test a week later (176), they're still high enough that Vic shouldn't have any platelet trouble with the surgery.

We see Dr. Maymani again tomorrow (July 22) to find out how the platelets are this week and whether we need to do any additional platelet therapy.

Nurse Katie
Our favorite nurse practitioner at Anschutz is Katie, who we've seen many times and who even gave us her cell phone number. She does all our presurgery visits, so we saw her for presurgery last week. I have nothing to report from that visit, but we love her so much, we always want to do a shout-out in the blog.

Dr. Julie Goddard and P.A. Jeannie Doyle
Dr. Goddard is Dr. Song's partner, and she will be doing the reconstruction on Vic's tongue. Jeannie is the person we'll probably see most often for follow-up visits. We've met her before, and she's amazing. This was our first meeting with Dr. Goddard, and we really like her too. Strong handshake—confident. Just the kind of surgeon you want.

We were very impressed with her preparedness. She has a Plan A (which, BTW, sounds awful—more on that later), as well as a Plan B, C, and D—and probably more. She has given Vic's case a lot of thought, and we feel like we are in good hands.

As I've discussed previously, Dr. Song is planning on taking up to half of Vic's tongue, so he will need "a little" reconstructive surgery to help him eat and speak. It didn't seem so bad—take a little square of skin from the wrist, make a tongue out of it. Piece of cake.

But we got the real skinny from Dr. Goddard's Plan A. Yes, they take a square of skin, but they make an incision all the way to the elbow to get the blood vessels (and an artery, I think?), then each of those blood vessels has to be connected to blood vessels in the tongue, and the blood has to start flowing well (this is called perfusion). Then they have to close the repair the damage to the arm, and arm skin is not very stretchy, so they will have to take a little skin (probably from the thigh) to replace the skin they take from the arm. (This is called a split thickness graft.) Dr. Goddard said this would be a superficial amount of skin, like if you scrape your knee on the sidewalk. I didn't want to remind her how painful it is when you scrape your knee on the sidewalk. I'm sure she knows.

(Plan B would be to take the skin and blood vessels from the thigh, and they would do that if they needed more skin for the tongue. In this case, they don't have to do a split thickness graft because leg skin is stretchier and easier to repair.)

She was very positive, even when discussing the worst-case scenarios. She said if he hadn't had any radiation before, she'd classify his surgery as "easy" (as is, she classifies it as "moderate"; definitely not "difficult") and expects his recovery to be on the "high end." She said their goal is to have him well healed and feeling good six weeks after surgery, although it will probably take three to six months before he settles into what they're calling his "new normal." There will likely always be some speech impairment, but it shouldn't affect his everyday life.

It sounded worse in the office than it sounds in these words, and Vic was pretty down about it when we left. I won't get into it here, because he is working on another blog post so you can see for yourself how he's feeling.

Next steps:

• Meet with Dr. Maymani to find out about platelets (July 22).
• Get a PEG (feeding ) tube placed (not really scheduled yet).
• Have surgery (August 1).

You'll probably see one more post before the surgery. I'll try to make it as scintillating as this one. ;-)

I'll leave you with this adorable dog video my sister posted on my Facebook today. Hope you like it as much as we did!

Cancer ... what else? -vl

In 2008, a company called Twitter was still in its infancy. Our new president, Barack Obama, had been the first presidential candidate to embrace the power of social media—but it was still unclear exactly how best to leverage this Twitter thing.

Obama's team started a Twitter handle when he was a candidate, @barackobama. It was widely known that this handle was manned by Obama's staff on behalf of him, but most tweets were not written by Obama himself. Yet every once in a while, Obama wanted to send a particular tweet himself—mostly when he wanted to wish Michelle a happy anniversary. Or a happy Valentine's Day. Or a happy birthday. (That guy really loves his wife.) And in these instances, he wanted people to know he actually wrote that tweet. I mean, who wants people to think he has his staff write love notes to his wife?

This is going somewhere, I swear.

So they came up with the idea that if he actually wrote the tweet and pressed "send," he would "sign" the tweet "-bo."

It is in that spirit that we start that tradition on this blog. That's right. Victor R. Love himself has written another blog post! And as you can see in the subject line, he has "signed" it -vl.

Of course, the part of the post that he wrote will be much shorter than the story above—but therein lies the difference between me and my husband.

So without further ado, Vic's blog post!

Hi!

And so it begins … or continues. Endless appointments with doctors, medical assistants, nurses, lab techs and various other hospital staff.

It's not that I don't appreciate their help. I just don't think my sister's house is big enough for the influx of new family members for holiday dinners.

Bye for now.

Vic

P.S. My adorable wife has also had to assume the job of emotional support dog. Not an easy feat. She's great most of the time, but she gets a little surly when I scratch her behind the ears or pat her on the head.

Love out

P.P.S. I forgot to add the requisite images! I'm new. I wanted to add a video of our foster dog, Andy, being all squeaky on a Sunday morning, but my "adorable wife" said I had to add a picture, so I'm doing both. Mwah ha ha! That'll show her.

I recommend turning on the sound for this. It's worth it.

Love out. Again.

From the horse's mouth? -vl

Good afternoon and happy Independence Day!

​

Victor R. Love here. I wanted to add a comment to Patty's last blog post, but then she "generously" gave me a whole blog post to myself, so here I am. It will be shorter and not as entertaining as the blog, but I'm not a journalism graduate.

Although as I understand the format, you start with something cute before you get into the dark, depressing meat of a blog post. So here's a new puppy thing for you. It's our former foster dog Cupcake, who was very insistent when she wanted me to pick her up.

Now that you've been filled with warm fuzzies, I'm gonna bring you back to reality. We have had some scary times recently, and they are about to get worse. "We didn't get it all" seems to be commonplace lately.

My reaction was,"Yeah, not a surprise," but my thought was"F****!!!!!!!!!" I don't have room for the rest of it.

Patty summed up the process, so I won't go there.

Let's just say that I'm bravely fighting cancer. I mean, we can say that, but it's bullshit. Terrified is better. Not about dying, that's easy. Walk into an Apple store and boom, there you go.

No, it's the recovery that scares me. Fortunately, I'm married to Wonder Woman. She takes me to the doctor, takes marvelous notes, explains them to me and makes a plan. She does all the work. I just hang around and occasionally grunt.

I also have Super Family who help and support me (and, most important for her, Bella). And, of course, all of you giving support too. I appreciate it. Thank you for all of your good wishes.

The only thing I don't have is my Waggie. That sucks.

But don't cry for me (I will refrain from writing "Argentina." I don't even know Argentina). I will just keep swimming.​

Original artwork by xxcharlotteoxx.

Ready for the long haul

I know, I know, I slacked off last week and didn't do an update, so now you get four blog posts for the price of one!

But first, the TL;DR: Follow-up surgery is scheduled for August 1. It will be bigger than the last one, with a longer recovery. Sounds kinda awful. And we are working on resolving the platelet issue.

Tumor board

When last we met, we were waiting on the tumor board. Well, they met, and—shocker!—they agreed that the margins weren't clear and Vic needed ... something. Probably surgery, maybe surgery and something else, probably not just something else. The amazing Jeannie said they wanted us to meet with the entire team—Dr. Song and the speech therapist, Liz (she was so wonderful the first time we met her); Dr. Jessica McDermott, the medical oncologist; and Dr. Ryan Lanning, the radiation oncologist—and she set those appointments up for yesterday (July 2).

Dr. Song, the surgeon, and Liz, the speech therapist

First up, Dr. Song and Liz. Dr. Song reviewed the results of the pathology, which we already knew from talking to Jeannie and Dr. Maymani. He recommended surgery, as a surgeon would. That said, he did justify that decision by saying that the tumor was "P16 negative," meaning that it wasn't caused by HPV (a virus) and wouldn't respond as well to radiation and/or chemo alone. He said he had talked to Dr. Maymani, who'd told him that Vic indicated he was receptive to surgery in their last appointment, and Dr. Song asked whether that was still true. Vic said yes, but asked "What are we talking about?"

Here's where the story gets grim, so watch this video of cute puppies first. I can wait.

Did you watch it? Did you? Because if you didn't, go back and do it now. You'll need this dose of cuteness to get through the rest of this post.

So here's what we're talking about. As you may remember, the tumor is deep. So to get it all, they'll have to go deep, too. And to get clear margins, they'll probably have to go about 2 centimeters. (What do you mean, "I didn't learn the metric system in school"? Fine. It's about ¾ of an inch.) Now, go to a mirror and look at your tongue. Go on. I'll wait. Did you happen to notice how thick your tongue is? Yeah, it's about ¾ of an inch. So they are expecting to take up to half of his tongue. This is called a hemiglossectomy.

Now imagine trying to talk with only half of your tongue. (Go ahead. Imagine it. I'll wait.) So the next step will be to reconstruct his tongue with tissue from his wrist. This will help with speech and swallowing, and it will also help the tongue feel more normal inside the mouth.

Fun side note: Liz said the weirdest thing that might happen from the reconstruction is that the tissue from the wrist could grow hair. Inside his mouth. Gross, right?

After that (or maybe before—what am I, a surgeon? I don't know the order in which they do things!), they will do a neck dissection, which is taking out the lymph nodes. I swear before they only talked about doing the right side, but now they are talking about doing the right and the left sides. Ugh. (Still, the neck dissection is the least difficult part of the surgery.

All in all, it will be about a 10-hour operation, so he'll need a tracheostomy.

Behold the Pocket T.O.M., a fun way to tell someone how
a tracheostomy works. That's Liz, the speech therapist,
pointing to where the trach tube goes.

A tracheostomy provides an air passage to help people breathe when the usual route for breathing is obstructed or impaired. In this case, they're operating in the mouth, so they don't want to put anything down his throat if he needs help breathing. He will have this trach tube in probably the whole time he's in the hospital, and will likely go home with it. He could have it for weeks or even months. This is not welcome news.

They also don't want to put anything in his mouth for several days following surgery, which means he'll have to have a feeding tube through his nose or directly into his stomach. Those of you who were with us the last time around know how excited he was to have a feeding tube, so this is spectacular news. (If they don't have sarcasm where you come from, please reread that last sentence with your sarcasm hat on.)

And he'll have some speaking and swallowing issues after surgery. The tongue will be swollen—and the flap starts out much bigger than it ends up (it shrinks—who knew?)—so it will be extremely hard to talk at first, but his speech should get back to ... if not normal, then new normal. They have operated on salesmen who made their living over the phone and were able to get them back to work, so I think he'll eventually be able to speak fairly well. And again, the back of the tongue is the swallowing powerhouse, and they aren't touching the back of the tongue, so he should eventually be able to swallow. That said, the tongue won't work the same, so eating will probably be a challenge for a while.

Altogether, he'll probably be in the hospital for around two weeks. (And whatever you just said or thought, trust me—I said or thought it too!)

I did ask whether these were all worst-case scenarios, and Dr. Song said, "Worst-case in some cases, but I'd say realistic." Sigh.

Liz gave him some "prehab" swallowing exercises to help prepare him for the surgery, which is tentatively scheduled for August 1. (It may come earlier; it won't be later. Apparently, there are many people who are sicker than Vic who need to get on the schedule. I guess that's some small comfort.)

Once Vic said he would do the surgery, Dr. Song said we didn't need to see radiation or medical oncology, so we just went back to Vic's sister and brother-in-law's (where Bella was). Vic took a little nap, Bella and I took a little walk, and then we went to The Capital Grille for dinner. If he's not going to be eating for weeks or months, we are going to have all our good food now!

Dr. Maymani, the oncologist

We saw Dr. Maymani today, July 3. The purpose of this visit was to figure out what we're going to do about those pesky platelets—and what is causing them to be pesky in the first place.

They've ruled out several things already: it's not a reaction to a new medication, it's not related to some illness, and there's no platelet disorder. It could be ITP, which is the immune system destroying the platelets, or it could be a primary disorder of the bone marrow, such as leukemia.

There are a variety of treatments, but the three Dr. Maymani discussed today—steroids, intravenous immunoglobulin (IVIG) and rituximab—if they work, we have an answer: it's immune related.

Dr. Maymani has clearly given our case a lot of thought. He and Dr. Song had a lengthy conversation and came up with a treatment plan, but as Dr. Maymani reviewed Vic's PET scan and his medical notes—and when he realized the surgery was a month away—he decided he wanted to go a different way.

So the current plan is to do a short course of steroids, get another blood test next Monday, and review the platelets on Tuesday with Dr. Maymani. If the platelets have improved, Dr. Maymani will probably start him on the rituximab to prepare for surgery. (This is administered by IV once a week, and Vic could get as many as four treatments in before the surgery.)

Dr. Reynolds, the heart doctor

We also saw Dr. Reynolds today. The purpose of this visit was to update Dr. Reynolds on all the goings-on, talk to him about the new drugs Dr. Maymani wants to prescribe and see if any of them has any adverse effects on Vic's heart (although in the appointment, I could only ask "Is that heart bad?" as if I were Frankenstein's monster or something), and to ask Dr. Reynolds if he could clear Vic for the gigantic surgery. Indeed, none of the new medications would be "heart bad," and Dr. Reynolds said he would contact Dr. Song and approve Vic for the surgery.

Let me 'splain. No, there is too much. Let me sum up.

So that's where we are now. In a way, we're back to the waiting game as we wait for surgery. A couple of things I didn't mention above in case you're the kind of person who skims the blog and then reads the ending:

• I asked Dr. Maymani about the prognosis of this whole shebang. He said it really depends on the pathology from the second surgery, but the goal of the surgery is to remove the rest of the cancer. If they are able to do that, then it's considered a cure. (It's not like when you do radiation or chemo, where you can say there's a 25 percent chance of a five-year survival. If there's no cancer left after surgery, you're "cured" of this cancer. It doesn't mean you won't get cancer again—but this cancer won't come back and get you.)
• I also mentioned to Dr. Maymani that we had forgotten to ask about the possibility of chemo or radiation after surgery. He said the likelihood is low. These were probably the brightest spots of the day.

So how are we? We don't really know. We're sad, we're angry, we're tired, we're frustrated, sometimes one at a time, sometimes all at once, sometimes we have the same feelings, sometimes we feel different. But we have each other, and we're both trying our best to just be there for each other and not drive each other crazy. All in all, just another Wednesday.

I'll leave you with this image this week:

What is that blue thing? you ask. Well, it's Wags. Or more precisely, her ashes. Again, if you were with us on this last journey, you know that Wags's profession is "Nurse." So all during Vic's recovery, she was plastered up against him wherever he was. I think she was more curative than the notChemo and the radiation. Now Bella is a good dog, but she loves me more than she loves Vic. So when Vic is napping, Bella is usually off on her own or with me. I was working, so I couldn't be there with him, so he toddled on over to his office, pulled Waggy off the shelf, and put her next to him while he was sleeping. It was too cute for words.

Have a safe and happy Independence Day, everyone. More than 9,000 people were treated for fireworks-related injuries last year, and don't even get me started on grill injuries. OK, get me started—July is the peak month for grill fires, and an average of 19,000 people per year go to emergency rooms because of injuries involving grills. Be careful out there!