“Your alarm has been disabled”

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At dinner last night I was reminded again about how my tasted are muted by chemotherapy. It’s been the unofficial theme for the week so I thought I would share another anecdote.

We had tickets to the Symphony to hear Handel’s Messiah, and we did dinner beforehand at one of our favorite downtown restaurants. We did what we usually do and just ordered 4 or 5 items off of their amazing Happy Hour menu to share. After we had been eating for a while I started to feel a little odd. I was feeling burpy/gassy and I realized that my stomach and esophagus were hot and burny as though I had been doing shots of whiskey all night. I mentioned the odd sensation to Christine who sort of gave me a “Well, yeah!” look and pointed to one of the three delicious sauces that came with our order of Rustic Cut Sweet Potato Fries. According to her I had pretty much been dipping my fries in liquid fire all night. She herself had taken a dip into that sauce a few times and was still suffering a bit from it 20 minutes later. Me, I had no idea. I ate it all.

Knowing what the feeling was made it it even weirder. Normally when eating spicy things (or previously, what a normal person would call “Mild”) I feel it first in my mouth, then if I continue to eat more, in my stomach and esophagus. But now apparently I no longer get this sensation in my mouth. As Stine put it: “your mouth is there to protect the rest of you from eating things that are too spicy, but now it looks like your alarm has been disabled.” I would almost describe it similarly to having your mouth numbed by Novocaine. You know that you’re supposed to be feeling something there, but you can’t. The switch has been turn off.

I had mentioned earlier this week that I’ve been eating what I knew to be spicier food than I had previously ever enjoyed, but this was the first time that I really realized how muted my tastes really have become. I had put away an entire bowl of spicy sauce that she could only handle a tiny tiny bit of. And based on that scale I know that I NEVER would have even made through even the first taste of it before going through chemotherapy. I can’t even stress how adverse to spicy foods I used to be. Now would appear that sky’s the limit!

Waiting

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The waiting room in an oncology office is a peculiar place. I make jokes when I’m uncomfortable so I think I tend to overcompensate for the nervous energy in the room and I find that I’m often the cheeriest one in the room. I think some people find it off putting as I tend to pick-up on the odd looks that people give me. “Laughter in a place like this, how insensitive” I seem to hear them thinking. And it’s mostly from those who are accompanying a cancer patient.

When we were there last Wednesday the waiting room was the fullest we had ever seen it (business is up!). Among those waiting was a family of three: a mom and dad reading some magazines, and between them their elementary school aged son. The father had thinning hair like me, and I immediately identified him as the cancer patient. It’s generally easy to tell in that room, if it’s a man they are bald or have short or thinning hair like me, if it’s a woman they’ll have a scarf or hat on. I kept looking back at that family while we waited as I was really impressed that they were all here for the appointment, especially that as a family they would bring their kid in with them. I think it’s great actually, cancer effects everyone in the family.

They called his name before they called mine and as the family got up and approached the Medical Assistant it became abundantly clear that I had made a huge mistake in my assumptions. It wasn’t his appointment, it was their son’s. And in fact it was their first appointment. He couldn’t have been more than 10 years old.

I can’t stop thinking about that family. In hindsight I can see the sadness, the stoicism that the parents were displaying in that waiting room. I can see now that they were scared but were trying to displace their nervousness. They both sat, heads down, slowly flipping through the waiting room magazines (I can’t imagine they were doing too much reading) while their son sat between them eating a small bag of chips and swinging his legs off the end of the chair.

Based on his age, chances are he has leukemia. Like lymphoma, it’s a another type of blood cancer, but one that attacks the white blood cells. And like lymphoma there is fairly high rate of survival. But still, I think of how hard it was for me to come to terms with my illness, that I can’t even imagine trying to explain that to a child. Or worse, to be a parent of a small child walking into that room. It was hard enough (and still is hard) for my own parents, and I’m almost 30.

It was certainly one of those “cancer sucks” moments (or rather, a phrase we’ve come to adopt in this house is simply “fuck cancer”). The moment when that kid identified himself as the name called in the waiting room has really stuck with me for the last two weeks. So much so that I’ve thought about it every day since.

“Are you Thomas?” she asked.
“Yeah.”
“And is this your first time in?”
“Yep” he said while looking back into his bag of chips for any which he may have missed.

What’s interesting is that I find that I don’t so much worry about him. I worry about his family. More specifically his parents. I’ve really come to realize to that this experience has in many ways been harder on the people around me than it has been for myself. It can be hard to watch sometimes, not only because its hard to see people that you love go through something like this, but even more so because often times there is nothing to do BUT watch. Watch and wait.

So when I’m sitting in the waiting room, looking around everyone, I never worry about the ones with the thinning hair, or the head scarves. I worry about the people with them. Us, we’ve accepted it. We’re here to get poked and prodded and filled with poison. That’s our job. Sure it’s hard sometimes, but not as hard as being the people who come with us and support us. THAT’s hard. Because all they can do is watch. And wait.

The truth is I don’t mind. I would rather this happen to me that to have to sit and watch it happen to someone that I love. Me, I can handle it. But what I couldn’t handle would be having to watch and wait while someone that I loved went through this kind of cancer treatment, or any kind of health struggle.

I can’t imagine what that must be like.

Hairloss Part III

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While the hair on my head continues to thin yet has mostly remained, I’m just about out of body hair. It’s almost entirely gone on my legs but is still hanging around on my arms. I haven’t been losing hair in clumps like I was back in October, but what I think is happening now is just normal hair loss that everyone experiences. The difference for me is that while everyone else is constantly growing new hair to replace what they naturally shed, I am not.

The thing about the hair on our bodies is that it serves a purpose. You really notice this when its gone. Nose hair for example is something you probably don’t think much about it, unless you no longer have any. The purpose of nose hair is both a first line of defense to keep things out, BUT it also works to help keep things in. Since I no longer have any my nose runs all the time. You know how when you’ve been outside in the cold for a while, and it can make your nose start to run? Well that happens to me, only it doesn’t have to be cold, and it doesn’t have to be “a while,” I basically just have be outside and it will cause my nose to start to run. And with none of that pesky nose hair to get in the way and disrupt the flow, it rolls on out in a quick and steady pace.

I’ve also lost the hair in my ears. Here is another example of a place that we have hair for a reason. Like the nose, the hair in the ears is again designed as a first line of defense to help keep things out. Without it though, I find the body resorting to an over production of it’s second line of defense, ear wax.

The weirdest place though that I’ve started noticing the hair loss is MY EYELASHES. And whats even weirder about that is that it’s mostly just the bottom lashes that have lost the good fight.

If you’re keeping score, I’ve got about 8 left on the bottom of each eye.

You can a couple of them still hanging on, but they sure went fast. I first noticed it late last week when I rubbed my eyes and noticed several eyelashes still stuck to my fingers when I pulled them away.

Also as the hair on my head has continued to thin at a slow pace, I have finally reached the point when my head is starting to get cold if I leave the house without a hat or beanie.  I really started to notice it in the over the last week or so while I’ve been out Christmas shopping. Still, if you passed me on the street I don’t think it looks to bad, nor do I feel that I particularly look like a cancer patient. Unless you already know.

Chemo today. The good people at the hospital have a couple of early Christmas presents for me:  adriamycin, bleomycin, vinblastine, and dacarbazine.

Merry Christmas to ME!

One more down, one less to go!

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Stine here. Brian is resting comfortably after chemo yesterday, and it was pretty uneventful. Well, it was certainly a little silly.

Because Brian has been experiencing some “anticipatory nausea” when he thinks about getting in the car and driving to the hospital, he has been taking a relaxant medication before we leave the house. This medicine made him a little silly by the time he started chemo, and it had him in a pretty good mood when the nurse came around with a bag full of wigs that patients can have. He sampled the wares:

This is his "come hither" look.

He looks good as a blond.

Needless to say, when I showed him this picture later in the evening, he had forgotten it was ever taken. =)

I am so thankful for his amazing sense of humor, and amazing optimism while being poked and prodded. Even when he’s receiving treatment, he keeps the nurses laughing and everyone around him smiling.

For example, somehow today we got into a conversation with our nurse about the “Chemotherapy and You” book, and how it contains a chapter on how to tell your children you have cancer, but not a chapter for how a twenty-something-year-old should tell their parents.

Nurse: “It must have been really difficult to tell your parents when you found out you were sick.”
Brian: “Yeah, it was pretty hard.”
Nurse: “It must be hard for them to not be able to do anything but watch you get treatment. Because you know a mother would cut off her arms for her children.”
Brian: “That’s why my mom only has one arm.”

…

I guess you kinda had to be there. Trust me, it was funny at the time. He says lots of funny stuff like that, all the time.

In September when he was diagnosed, he was worried that he wouldn’t be a “good” cancer patient, with a sunny outlook.  I don’t think he has to worry about that anymore.

Anyway, my point is, that Brian is handling this like a champ, and it keeps things in perspective for me when I’m dealing with a hard time at work, or get stuck in traffic. He’s the best thing that has ever happened to me, and I’m so glad that he will be around to celebrate the rest of our lives together because of exactly the treatment he went through today. Modern medical technology is amazing, but I’m sure his charming personality has a lot to do with his treatment, too. =)

Surprise Doctor Visit!

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[Note: Some the pictures ahead may be a little intense for some readers and are rated TV-MA, though the page all loads at once so you can probably already see them…]

I figured it was only a matter of time before I would need to make an unplanned visit to see a doctor. I just didn’t think in a million years it would happen like this.

The first thing this morning (Thursday), while I was half asleep, I went to pull a cereal box out of the pantry and in the process knocked a jar of Alfredo sauce off of the shelf. I landed squarely on my toe. This picture was taken less than 2 minutes later (note: had I known this was going to happen I would have cut my toe nails this week, but that’s not the grossest part, so you may not have even noticed =):

The damage to the nail was instant. And hurt. Bad.

I didn’t think it was broken, but given my current medical history and the fact that I’m both prone to infection and no longer capable of healing normally, I thought it would be a good idea to check-in with my oncologist to see if she thought I should have it looked at (something I normally wouldn’t have done). Later in the afternoon her office got back to me and as it was still painful they recommended that I have it looked it. I agreed as I was concerned about the amount of blood and pressure building up under the nail, again seems the type of thing that could lead to a problem with so many of my normal body functions as compromised as they are.

Luckily my local clinic had an opening on such short notice (I think it helped when I explained that “my oncologist wants me to be seen today”) so I didn’t have to go to Urgent Care in Seattle or Bellevue. I was able to get in at clinic just down the street at 4:00pm.

By this point it looked a bit worse, but really most of the damage was apparent immediately after the “sauce trauma”:

The doctor quickly confirmed that it wasn’t broken but given everything else agreed that it was probably good of me to have come in. Since I was there she thought it would be a good idea to try and get some of the blood out from under the nail, both to take pressure off the area for comfort and to hopefully save the nail. So with a needle she proceeded to drill a hole in the top of my nail.

Back at home now tonight, the blood continuing too slowly ooze out, and I’ve been putting my foot in warm water to encourage it along. I’ve learned to appreciate medical terms for things so I wanted to share that according to my discharge paperwork I had a “subungal hematoma” for which she performed a “tephination” as her last act before going on break for the holiday. Merry Christmas Dr. Constans!