Thursday, June 20, 2013

A Visit to the Oncologist, in Two Parts

Part 1: Before the Visit

I'm a little amazed at how weird it feels to be a patient again -- even if it's only for blood work and an office visit. It's been just over four months since my last chemo and 3+ months since my last scan, but it seems of another time.

Part of the time distortion is that April and May are crazy busy times around here. Sports, schoolwork and a whole lot of work work has meant a lot of activity, and when you compress all of that in a short time frame, it tends to distort time in a way, stretching it and winding it up at the same time.

But as I sit in here in the clinic, I'm struck, odd as this sounds, by the number of sick patients. I realize it's a cancer center, but  after spending the first two years of diagnosis working to redefine (in my mind) cancer patients as someone who felt and looked like me -- that is asymptomatic and surprisingly healthy --  I've forgotten that many cancer patients here on Y8 look much sicker - tired, masked, bald or weak. It's a stark reminder,

Fortunately, I feel fine. My vitals were all fine. My weight is healthily down; my pulse is back to its low running rate. I'm just waiting to see Dr. L to hear about my blood work and such. I expect to hear nothing surprising, but there is -- and will always be -- that nagging anxiety that there was something in the lab work, some growing lump. As I've said before, there's very little I can do to control that.

Part 2: After the Visit
Everything's fine. Let's start there. But I left feeling a bit disappointed nonetheless. Dr. L was running late so I ended up seeing my NP, who is fine and nice enough, but isn't Dr. L. So that was the beginning of the let down, but what exactly does one say in those situations: "Oh, hi. I thought I was going to see Dr. L..." with the implication being, "and that's who I would have preferred to see."

No, that seems awkward and mildly insulting. So we just see the NP. But the disappointing point is that, although my blood work looked fine, there's nothing particularly informative about it. As she explains it, there not really going to see any signs of my lymphoma in my blood work, unless it's relatively advanced. And if it is relatively advanced, well then, I'd probably know about it because I'd have, repeat after me, fellow veterans of oncology visits: night sweats, fatigue, etc.

So if the blood work isn't informative, and the office visit consists of asking me how I'm doing, feeling my lymph nodes and spleen,  listening to my lungs (I'm guessing that's what we're doing with the stethoscope), and asking me how I'm doing... well, it just seems like we could all but do that by email, couldn't we?

At the root of my disappointment, I think is this: when we're post-chemo, or in remission, or whatever we're going to call this waiting-for-lymphoma-to-return phase, what we want is hard confirmation that we're okay. Isn't that why, at it's most basic level, we go to a doctor, any doctor? If we're feeling sick we want the doctor to make us better. But if we're feeling okay yet are concerned even ever-so-slightly that something might be lurking (as, I should add, all cancer survivors tend to be), then we want the doctor to say, "you're fine."

And even though I feel fine and have no reason to think otherwise, that's what I didn't get on Tuesday.


Tuesday, June 11, 2013

Play Ball!

In a week, we make the transition from kids' sports to Dad's sports. Little League and spring soccer wind down this week and my softball league begins the week after. It's a 40-and-over league that I more than qualify for by age. There are only two things remarkable about the league:

1) It's amazing that, given the shape of some of the players, more people do not get injured just from warming up. 

2) This is my third year playing, and hopefully, it's my first season that won't have missed games due to biopsies (two years ago) or chemo fatigue (last year) . 

Hopefully, chemo is in my rear view window and nowhere to be seen on the horizon. While I still think about cancer often, I find that, true to common wisdom, I'm not thinking about my cancer as often -- except of course, when I have a muscle ache, or a joint ache, or a cold.

I always play sports with a fair amount of intensity. But last year, when I patrolled center field (or anywhere in the outfield), I did it with at least a modicum of ambivalence, torn between feeling like I should be fatigued and wanting to prove to everyone that, screw cancer, I could still play. Ironically, there were only two people on my team who had any idea I had cancer, let alone that I was going through chemo. But as is true with much of my sports playing, the proving is really to myself.

There's a great line from The Princess Bride.  When Inigo Montoya finally meets the evil, six-fingered man for whom he's been searching all his life, the man (spoiler alert) stabs him and as Montoya struggles, he says, "You have an overdeveloped sense of vengeance. One of these days, it's going to get you in trouble." 

This year, I have no overdeveloped sense of cancer vengeance. I'm just going to enjoy the games. I have nothing to prove to my teammates or myself. Cancer. Biopsy. Chemo. Whatever. I know I can play. I don't even need steroids to help me.   


Tuesday, June 4, 2013

It's Just a Tooth

One of the perks of chemo, as I wrote back in October , was that I got a get out of dentist free card. Unfortunately -- or maybe fortunately -- that card expired. 

So I went to the dentist today and the good news is that my teeth are clean. The bad news is that #19's gotta go. I kind of suspected that -- the tooth's been on it's way out, so to speak for years, but I'm not really here to write about my teeth.

I'm here to write about my dentist.

After he evaluated the tooth to see what the verdict was, he sighed. He put down his instruments, and looked at me very seriously (or at least that's what I thought, but he was wearing his magnifying glasses and I was wearing goggles of sorts, so it was hard to tell). And he said, "I'm afraid it can't be saved." 

And all I thought was, "It's just a tooth."

I mean, I know having oral surgery will suck. Been there, done that. I know it will likely be expensive to get an implant. I know it will be inconvenient with appointments and recovery and such. 

But ... it's just a tooth.

Once again. Thank you, cancer, for the perspective.


Sunday, June 2, 2013

It's Not a Tumor, Or, 5 Symptoms that Aren't Symptoms At All

Some people spend many years worrying about whether they'll ever get cancer. Whether its family history or natural anxiety, every mole, every unchecked symptom, every unanswered question is  potentially cancer in the wings. 

Ironically, I was never like that. 

Which is not to say I didn't obsess about whatever ailed me -- I've had many visits to the doctor or walk-in clinic to check out various medical issues, but I never thought that the root of any of those issues was cancer. Even when we were chasing the diagnosis that would eventually be follicular lymphoma, it was only in a passing exaggerated worry that I imagined it could be cancer.  Now, the possibility of any ailment being a tumor is the first stop on my ride to diagnosis. The symptom detection train first stops at cancer, even if the eventual destination is much more benign. There are no express trains; It goes with the territory.

Sometimes I'll email Dr. L to check it out. Sometimes I'll  wade deep into the murky swamp of the Internet. Sometimes I'll  just wait for common sense to take hold. Here are a few symptoms that turned out to be nothing but signs of life.

1. Maybe I'm just getting old -  My knee began hurting one Thursday in between chemo rounds. By Friday evening, I had waded deep into the cloudy water online and was pretty sure that I had TLS - which was, after all, a potential side effect of my chemo, and which also could require immediate medical attention. It's hard to see clearly in the swamp but an email to Dr. L and a couple of Advil kept the train moving.

2. Maybe I'm just tired - Every appointment from here until I stop seeing an oncologist, I will be asked by doctors, nurse practitioners, and anyone else whether I'm feeling tired. Unexplained fatigue, along with night sweats and weight loss, are telltale symptoms of lymphoma's presence. So when is fatigue attributable to cancer, and when is it due to the fact that I wake up between 4:45 and 5:30 every day, work a full time job, do freelance work, coach youth sports, run, and blog. I don't think I need an MD to figure that one out.

3. Maybe this running thing works.  At the height of chemo, on day two of my last treatment, with steroids and fluids at their bloating best, I weighed about 5-7 pounds more than I've ever weighed, and about 15-17 pounds over what I would call my ideal weight. Some of those pounds naturally disappeared a week or two after the chemo ended. But since then, I've made a concerted effort to lose the rest. I've been trying to watch what I eat and take in more fruits and vegetables -- although this is very tough to do in April and May when 90% of our meals seem to be on the way to or from a soccer field, baseball field, track meet or karate dojo. Most of my weight loss effort has been through running, and I'm happy to have lost most of the pounds I've wanted to, but every time I step on the scale, I kind of want the number to be low, but not too low. 

4. Good-bye standing desk. The harm of a sedentary lifestyle has been well documented. So too, has been the rise of the standing desk and the treadmill desk. For $23 at Ikea, I bought the parts and converted to a standing desk. Problem is: the veins in my leg aren't as fond of gravity as they used to be.  Standing 4-5 hours a day led to some swollen lower legs, an ultrasound and bloodwork. When that revealed nothing, it also led to the dismantling of the standing desk. 

5. It's not a TUmah -- In one of Arnold Schwartzenager's "finest" acting performances, you may remember, he plays a cop undercover as a kindergarten teacher. When a kid suggests that maybe he has a tumor, Arnold responds, "It's NOT a TOO-mah," a line we have used often in our house, both before and after diagnosis. The other morning, I felt something inside my cheek. It felt like I could move it about and instantly the train pulled into cancer symptom station. But on further review, I could feel something irritating the outside of my cheek as well; and looking closely at it in the mirror, it became pretty clear that what I could feel wasn't a lymph node gone rogue, but a pimple forming. Didn't call the doctor on that one.

So there you have it. Five symptoms so-to-speak, two calls to the doctor. None related to lymphoma. As I move further out from treatment, I know that the symptom-mania will subside, if not completely disappear.

I also know that I'm not the only one chasing potential symptoms.  Fellow patients/survivors out there - what crazy symptoms did you have that turned out to be unrelated to cancer?