One Year Later: The Adventure Continues…

It seems hard to believe it’s been a year since I created this blog. And yet, when I think about all that has happened since, it’s hard to believe it’s only been a year.

I created this as a means to quickly and easily keep my family and friends up-to-date on rapidly-changing news about my health. I had no idea that it would turn into what it has, or that my audience would grow to include people who now know me far better than I know them. For all of you who read this, thank you. Thank you for your support, kind thoughts, and kind words, both then and now. I hope none of you have interpreted my recent absence here as a sign that I don’t appreciate you, or care about you. It’s not that.

I also hope that none of you have interpreted it to mean that “it’s all over”. Because it’s not that, either.

When I started this blog, I had a cancerous tumor in my mouth and no idea what was going to happen. One year on, I have a piece of my forearm in my mouth, and no idea what is going to happen.

Which is by way of saying that, though the immediately life-threatening aspects of my situation have changed for the better, I’m still engaged in coping with the effects of the cancer.

Fundamentally, none of us knows what is going to happen. But living in our society, and participating in Western Civilization requires us to wrap that fundamental uncertainty in a probabilistic cloth of illusion. We don’t know that we’ll be here tomorrow, or six months from now, or a year from now, but we probably will be. So we behave as if we will be, and that cloth of illusion becomes such a part of our daily lives that we don’t really notice it anymore.

But, having had that cloth ripped away, it’s harder to wrap your world up in it again. It takes a long time for your heart to start trusting in probability again. There’s a tendency to look over your shoulder, to start at sudden noises. It’s hard to commit to things, to make long-term plans. Heck, to make short-term ones, even. You feel unsettled, off-balance, as if you’re always walking on tip-toes. Maybe if you don’t make too much noise, that other shoe won’t drop.

Eventually, if you’re lucky, and the months go by, and the scans keep coming back negative, and memory begins to fade, you get tired of walking on tip-toes. It takes a lot of effort, and, as time goes by, you accumulate enough data points that the old probability argument begins to sound reasonable again. And you start to relax.

Not that you can ever really forget. Sure, you wrap things back up with that cloth of illusion, but it never fits the same. You keep seeing through it at the oddest times, like when the simple beauty of a sunny day reduces you to tears of joy, or when you’re able to keep calm in situations that would overwhelm other people. Or, years later, when you have an odd pain, and though it feels like a sore muscle, and you were working pretty hard in the garden, you try-not-to-worry until it’s better.

The first time I played this game, I made a rookie mistake. What did I know? I was in my twenties, and really wanted to go back, to believe that I could pick up the pieces of my shattered life, and put it all back together again, like it had been before. So I tried it, and I did a really good job, and the night I picked up the last piece, I made the mistake of trusting it. I let my guard down. Boy, that felt good.

The next day I discovered the lump that meant my lymphoma had recurred.

(Riiiip! There it was, torn right away again.)

After that, it took me a while to begin to get the cloth back into place, and there was really something “off” about it, like one of those store-bought slipcovers that never fits perfectly.

On the other hand, life frequently does go on, and what’s the point of being there if you don’t play. You start with acting “as if”, even though you know the truth, and that’s how you get drawn back in. Because the thing about probability and statistics that makes so much possible is that, almost all the time, in this game, betting “as if” works. And it allows us to keep our sanity, stay out of the monastery, and avoid chemical anesthetics.

Which is all a long-winded way of saying that I’ve had the cloth ripped away quite rudely a couple more times in the last few years, and that’s not easy. I hadn’t really finished processing the whole heart-failure thing when ol’ S. M. showed up. Now it’s doubly hard to ignore that sensation at the back of my neck that something else is about to happen. (I guess it’s no surprise that I don’t go to those haunted-house movies. I’m carrying my own soundtrack, complete with eerie violin section and ominous cellos.)

I dreamt last night that my left forearm was being bitten by small dogs that were chasing me up a hill randomly spotted with thorn bushes. (Attentive readers will remember that my left forearm is where they “harvested” muscle to repair my tongue, now home to “the paramecium.”)

Maybe we should start talking about how I am physically.

Well, the aforementioned paramecium is approximately the same color as the rest of my arm, now, though the skin there is lumpy, oddly-wrinkled in places, and shiny. That arm is much weaker than the other, and I feel a sharp pain when it bears weight in certain ways. I’ve started to lift some small hand weights to build it up. I can notice a small “trough” or depression in the flesh, where they removed a blood vessel and muscle, but it’s not obvious.

The site on my thigh which donated the skin for the paramecium has the same texture as the rest of my thigh, though it is an obviously different shade. Given the way it’s changing, I can imagine it might not be obvious in a year or two.

My face has returned mostly to normal, though there remains a small puffiness just below my jaw. This may eventually go away, or I may just have to get used to the fact that my lymph drainage in that part of my body is messed up permanently. It annoys me, but it doesn’t make me worry about scaring small children.

My mouth function is…well, I don’t know. It changes, and I’m still learning about it, and it’s complicated. My lower lip doesn’t work like it used to, and my tongue doesn’t either. I would be doomed in L.A., because I can no longer make kissy sounds, as in air kisses. Every so often, as I try to work on this, I make a reasonable kiss by accident, but I can’t reproduce it. (Kimberly seems to be willing to accept my non-sound-effect kisses, which are different.)

I also have trouble sucking things, like through a straw. There’s a motion that my numb tongue and cheek used to do that they aren’t anymore, or something.

More annoyingly, I sometimes drool, because I can’t feel my lip enough to keep it properly closed, or properly tight against a cup or glass. This is particularly true when I’m sleeping. To be honest, I find this deeply humiliating, particularly when someone else is around.

Inside my mouth, there are areas where I have no feeling. Occassionally, food or a pill will get pushed into one of these places, and I have no idea where it is, or even that it’s still there. This has led to some surprises. My tongue extends reasonably well, but it curls off to the right side. The right side doesn’t bend or flex as well as the original equipment, either, which is one of the many complications in my swallowing. Sometimes, it feels particularly stiff, and speech gets difficult. Otherwise, tongue movement seems OK.

Swallowing has become more commonplace, but it still is limited, and requires attention. It is easy for something to start toward my airway if I’m in the wrong position, or I tilt my head, or I drink too much at once, and the result is lots of coughing. Bending over can be a problem, even when I’m not actively working on eating. There may be some “pooling” in my throat that persists and sloshes the wrong way when I move, and my stomach and esophagus are altered, so that stuff can also get pushed up.

While I’m swallowing a greater variety of foods, there is still a big dependence on being able to “wash them down.” My ability to start and move stuff down by muscle action is still impaired. I particularly noticed this at my last session with Dr. Lu, where I was lying face-down. My mouth quickly filled with saliva which wasn’t going down my throat. I was, after various attempts, able to figure out a way to swallow it, but it was quite difficult and hard to reproduce.

Now that I’m eating more different things, I’m realizing that I will have to relearn chewing, once I’ve regained the ability to swallow larger bits of more solid food. So far, I’ve been only eating stuff in nibbles, and never filling my mouth enough to put food into the “blank zone.” Occassionally, I’ve taken in enough to realize that manipulating food in my mouth is going to be quite different, from trying to avoid biting the right side of my tongue on up.

Finally, something (lips? swallowing? shape of mouth cavity?) got changed, so that when I sleep, I end up breathing through my mouth, and I wake up each morning with a completely dry mouth. I don’t know why. I hate it. It bugs me every day, but I may not have ever mentioned it, because, well, there’s a long list of those things.

Well, talking about how I am physically didn’t really cheer this up too much. Sorry about that. I promised myself that, for this anniversary post, I’d try to be really honest. And, in the interest of documenting the process, I’ve written about things I haven’t been talking about much, not that I’ve been writing about much here lately.

I hope this doesn’t come across as bleak to you as it seems to me. For all the challenges, my life is way better than it was a couple months ago. And, while I’m struggling with all of the above, I am beginning to move forward again, in big and little ways. We finally found a skeleton key to buy that works with our 1908 doors, so now we finally have a locking bathroom! Talk about swank! And I’ve been doing a treadmill workout Mondays, Wednesdays and Fridays all year so far, with light weights for my arms on the off days. I’ve been cooking soups for myself, and I even gained a couple pounds lately. (I guess that means I can cut back on the sour cream on the baked potatoes.) That’s all good.

So, what’s all of this mean? It means I’m still in transition. The diagnosis that led to the start of this blog set in motion a chain of events, and a series of changes, that are still in progress. It was unexpected and unwanted, but there you go. Life is not as scary as it was when I started this blog, but it is certainly more complicated than it was before the tumor. There is still a lot that needs to be worked out. We’re not done, though we’ve come a long way.

I’m thinking that I’m about ready to start writing more again, so there will be more to read here. It is definitely not time to shut this thing down.

Thanks for reading.

It’s our birthday

One year ago today, Paul wrote the first post of Paul vs. the Squamous Monster. It was a terribly frightening time for both of us, and we needed a way to easily share both the medical news and our feelings about it with family and friends. While I hope that you never have occasion to need such a thing, I highly recommend this medium if ever you do.

I have more to write, but it will have to wait for later. And Paul is planning to say a word or 200 here today as well. So, please check back. And, as always, we’d love to hear from you, too.

Customer Satisfaction Survey

Yesterday, I received via email the following survey from the Coffee Drink Delivery Service.

Dear Kimberly,

We hope you have enjoyed your experience with the Coffee Drink Delivery Service. In order to monitor our performance and gauge our customer experience, we are sending you the following questions. Your answers will help us continue to improve our service. Thank you for your time.

1. My coffee drinks have usually been:

a) on-time and yummy

b) on-time, but sadly lacking in taste

c) on-time, but foul

d) late

2. My coffee drinks have been made with:

a) love

b) indifference

c) contempt and loathing

3. My coffee drinks have helped me:

a) sleep in

b) get up and go

c) in no way

4. The coffee drink delivery person is:

a) extraordinarily cute and adorable

b) sexy enough to be distracting, if I were awake

c) very kind and thoughtful

d) all of the above

5. The coffee drink song is:

a) an ever-changing source of enjoyment

b) a regular annoyance

c) something I usually sleep through

6. I wish the Coffee Drink Delivery Service would:

a) go away

b) bring me prune juice instead

c) stay the way it is

d) expand service to other cities, such as Houston

Thank you. Your responses are very important to us at the Coffee Drink Delivery Service. Again, we hope you are enjoying our service, and will continue to in the future.

Sincerely, The Coffee Drink Delivery Service

What, you may ask, is the Coffee Drink Delivery Service? And how might you sign up for it?

Since Paul is much more of a morning person than I, and a sweetheart to boot, he has, most mornings of the past few years, brought me a coffee drink in bed. One of the lovely little pleasures in my life is hearing my husband coming down the hall to deliver a freshly-made latte to my bedside table, singing his own special coffee delivery song:

Coffee drink delivery service
Coffee drink, if you are nervous
About how you’re going to wake
Have yourself a coffee break.

When Paul had his surgery in February, the service halted operations for a while. There were more important things on my mind than coffee, and other ways to acquire it. I coped. Now that Paul is feeling better, service has resumed.

My answers to the survey? 1. a; 2. a; 3. b; 4. d; 5. a; 6. d. (My answer to 6. was d only because we spend time with my family in Houston; otherwise the answer would’ve been c.)

To sign up for the service, you’d have to be in the service area. Perhaps you know someone who would be willing to start a franchise.

Anniversary

One year ago today, Paul had the biopsy that resulted in his second cancer diagnosis. Paul remembers nothing at all of the hospital; we assume that’s in part due to the general anesthesia used for the procedure. I, on the other hand, have vivid memories from the day.

We sat together in the outpatient surgery waiting room until well past Paul’s scheduled procedure time because the surgeon had an emergency surgery. We read bits of magazine articles to each other, and eavesdropped on other patients and their families.

When Paul went into surgery, I paced the halls. I hadn’t brought a book, and I couldn’t focus on the work that I had with me. There’s a very long corridor in the basement of the medical center; I think I memorized every door, every turn, every sign along it. After the estimated time for the procedure had passed, I went back to the waiting room… and waited almost another hour, too anxious to do much of anything.

The surgeon came into the waiting room in scrubs, his bright print surgical cap still on, his face carefully neutral. Sitting down next to me, he said first that Paul was in recovery, and wouldn’t be awake for a while yet. Next came the critical information. “Pathology will have to confirm this, but the tissue we biopsied looks malignant.” I closed my eyes. “Oh God, not again.” A couple of deep breaths later, I asked, “What do we do next?” Handing me his card, he instructed me to call his office right away to set up an MRI, a CT scan and an appointment with him for Paul. He asked why the CT scan that had been scheduled for late November had been canceled. I told him that I didn’t know, but that a CT scan had been done earlier in the fall. Then he was off to his next surgery.

I called to make the appointments. I called my office, to say that I wouldn’t be in for the rest of the day (or, as it turned out, for another 4 months). I called my parents and burst into tears.

Some time later, a nurse led me back to the recovery room, where Paul was conscious but still quite groggy. Pulling a chair up close to the hospital bed, I held his hand. When he was sufficiently awake, I told him that the surgeon was fairly sure he had cancer again. We held each other and cried. Then he got dressed, and I drove us home.

Eleven days later, Paul started this blog, Paul vs. the Squamous Monster. And here we are, one hellish year later. It has been a rough ride, both physically and emotionally. We hope that, other than routine follow-up appointments and Paul’s continued improvement with swallowing and speech, we have reached the end of this particular chapter in our lives.

Organizing and Eating

A long time ago, before the Squamous Monster showed up, I had an idea that I was going to take care of all the old filing around the house. I set up a card table in the corner of my office, so that I would have some room to spread papers out as I sorted them. It was intended to spend a couple of weeks in my office, and then, having served its purpose, return to its spot in the basement.

Yeah, well. You can guess how that worked out. Over the last year, that table has become a depository for random papers, books, and other items that didn’t really have a place of their own, and didn’t really deserve much attention, given what else was going on. Lately, I’ve been back “above water” enough that the pile of chaos on that table has been able to bother me.

I’m happy to say that table is now gone. Over the past couple weeks I’ve made multiple assaults on it, and yesterday I was able to completely clear it, fold it up, and move it out of the office. And while, as is often the case, that process has left a few ripples of disorder in other parts of the house, overall there has been a lot of progress.

This is just one of the 2005 organization projects that we’ve been tackling, as an expression of my desire to feel good about this year, and exert control over things I’ve been far too preoccupied to worry about. Also on the ‘completed’ list are the cabinet in the bathroom, the big cabinet at the top of the stairs where we keep towels and medicine, and the area off the kitchen where we store all sorts of things from plastic containers to infrequently-used appliances. I’m pretty happy with the way I’ve been keeping up my intention to get these taken care of.

I’m also pretty happy with my commitment to exercise. For January, I’ve set the goal of doing a treadmill workout every other day, and I have been doing it. I’ve been consciously fighting my desire to do more, faster. I want to just see how my body responds to this level of activity. It’s felt pretty good so far, and this morning as I walked into Dr. Lu’s office, I was noticing that I was feeling better. But it appears my caution may have been wise, since after this afternoon’s treadmill session, I’m feeling wiped out. We’ll see how I feel tomorrow after a good night’s sleep. I’ll have all day tomorrow to recover.

Today on the menu: some potato chips, chicken noodle soup, and split pea soup. The last was the easiest. Potato chips are best one at a time, and it helps to wash them down with sips of water. The chicken noodle soup was work, but with lots of chewing, noise and sips of water, I got most of it down. It didn’t really feel like “eating” in the normal sense, but I did start with a full bowl, and end with an empty one, which is what counts, at this point.

Tomorrow I’ll have some more potatoes, I think.

I’m a lot better at swallowing pills now, and the other day I took one while sitting with other people in the living room, and nobody noticed what I was doing! My drinking is much more controlled, so I end up coughing less often. I was thinking this evening that I might soon try another shot at carbonated beverages. Yeah, I’m getting cocky now. Hoo-ya.

Today I am a child


I grew up in a part of Texas where snow was a once-a-decade occurrence. Four years in New England did not cure me of my love of and fascination with snow… and it has been 20 years since I last lived there.

When I woke up early this morning, it was snowing. I was instantly wide awake. Awake like a child on Christmas morning, full of excitement and expectation. I have already been out once, in pajamas, gardening clogs and coat, to take this photograph of our house before our photocell-controlled electric “candles” shut off.

From my office, I hear children laughing. Across the street, our neighbors are building a snowman. With only the two lower parts of its body in place, it is already five feet tall. (This is good, heavy, packable snow!) I can’t wait to see it finished.

Human Pincushion says "Good-bye, 2004!"

The ten month anniversary of my surgery was Monday. I had a CT scan and my last 2004 appointment with Dr. Futran on Thursday. The good news is that my scan looks fine, and his examination of me showed I was doing well. The bad news is what I had to go through to get this news.

We were at the hospital early in the morning. I was supposed to get a blood test, then the CT scan, then see Dr. Futran. When they sat me down for the blood draw, I asked if it would be possible for them to put in something that would work for the CT people to inject their contrast dye. I really didn’t want to get stuck twice. This sent the phlebotomist off to find her supervisor, with whom I got to discuss it. Apparently they are not allowed to do such a thing, and besides, they don’t have the necessary equipment in that department, which I gather is just about drawing blood samples. He gave me the option of going down to CT, and having them draw the blood, which apparently they can do. But he suggested that the blood test results would be needed before the scan, so I’d have to wait longer if I did that. I thought about it, then let them stick me. They used a very small needle, and got it the first time.

Later, down in CT-land, they laid me on a gurney to insert the gizmo for injecting the contrast. I went through my usual explanation about how bad my blood vessels are, after tons of chemotherapy, so he was forewarned. He was very careful, and took a long time looking at, and rejecting vessels before he found one he wanted to try. Sadly, while he could hit it, and get the gizmo’s narrow catheter in part way, it wouldn’t go far enough. (Having one “blow out” when they inject the dye is, shall we say, very unpleasant. I speak from experience.) He tried delicately wiggling to slide the thing along, but the inside of that vessel was too scarred from caustic chemical abuse. He finally gave up, apologized, and went looking for another site.

To make a long story short, he never succeeded. We had a couple more “almosts” and a couple dry holes, before he went off to call for reinforcements. He was extremely and sincerely apologetic, which helped a little, but not enough. I waited for a few minutes, sitting up, clutching my arm close to me, both to ease the pain and to keep it warm, so my vessels wouldn’t contract more. I cursed myself out for not having pumped myself full of fluids the night before. Then the nurse showed up.

She also took a while looking and rejecting possible sites. Finally she found one she was willing to try. It didn’t work. Another “almost”. She then went back to looking. She had me take off my shoe to look at my foot. Nothing interesting there. She went for one on the opposite wrist from the first attempt. Nope. Finally, a spot on my shoulder. Foiled again. “Three is my limit,” she said, promising not to stick me again, and going off to talk to the doctors.

She returned with the word from the radiologist that they could get 90% of the information they needed without the contrast, and his permission to go ahead and scan me without. I was relieved, so much so that it wasn’t until later that it occurred to me that, if they could get 90% without contrast, why hadn’t they done that in the first place?

So, a total of 9 needle sticks on the day, some with the associated wiggling, twisting and digging around that always leaves a bruise. A no-contrast CT that Futran says “looks pretty good for shooting with no contrast.” We’ll get the formal read from the radiologist next week, but Futran thought there was nothing to worry about.

Just for fun, since I’d already been abused and rendered emotionally vulnerable, I got the extra thrill of having Futran use the fiber optic scope to look at the back of my mouth. This is the one they stick through your nose which bends around in back, after they spritz you up the nostril with the bitter tasting anesthetic. (You know, that one.) Hey, I thought, what’s more discomfort? My day’s already ruined.

At least his view of the back of the flap showed it looking very nice. He seemed proud of his handiwork, and the way I had healed up.

So, after we’d rattled his cage to get us the referral for speech therapy that we were supposed to get last time, but didn’t, we got to go home. I go back for another followup, sans CT, in 3 months, and another CT in 6. I intend to discuss the idea of ordering a no-contrast CT at that point. (And if we can’t safely do that, because we really, really need that extra 10%, then I’ll guzzle as many fluids as I can the day before, and have a really salty meal before bed.)

Compared to all that, my later acupuncture appointment with Dr. Lu was painless and very soothing.

The morning at the hospital has been the worst thing about the run-up to New Year’s. I’ve been quite energetic, and doing little ritualistic activities to flush out the bad year and be open to the new. I’ve been sorting through my wardrobe, washing bedding, and re-organizing closets and cabinets. It has been nice to toss left-over remnants of my early post-hospital time in the trash! And taking care of the rat’s-nests and chores that piled up has been really fun. Yes, figuring out why the drawer in my desk wasn’t opening all the way did require taking the thing half apart, but I finally figured it out, and fixed it, so now it opens more than 3 inches.

I’m excited to be in 2005. 2004 was memorable, in a very bad way. I’m hoping we can make this year memorable in a very good way.