davintosh

Since it’s been over ten months since my last post in Medical Adventures, and this post has been in draft mode for nearly that long, I suppose it’s time to actually finish it up and hit that Publish button!

My surgery date was December 16 (where did that time go?!?), and it went smoothly, but I did end up staying an extra night in the hospital; they like to have patients who have had this surgery pass some gas before being discharged, and my gut was a little slow to wake up I guess. But it finally woke up, and I was out the door.

I got a phone call from the surgeon the evening I was released — December 18 — and he told me the pathology report had good news; all the “margins” were clear, which is to say the edges of the excised tumor were clean and showed no evidence that any cancerous tissue had been left behind. I’m now considered “cancer free”! And that’s truly cancer free, after beating the lymphoma in my jaw last summer. Woot!

Of course “cancer free” is a somewhat transient condition, especially for a cancer survivor. Two years ago I would’ve thought myself to be cancer-free, but in actuality the tumor in my jaw had already begun to make itself known, and who knows how long that thing had been growing on my kidney… Plus there is the outside chance that some of the lymphoma in my jaw survived the chemo and radiation therapy, which is why I’ve been back a number of times for blood work and the occasional PET or CAT scan. Statistically, the people most likely to get cancer are those who have had cancer before; a recurrence of the same cancer, and often different types of cancer will hit a survivor later in life. If nothing else, last year’s experience have made me realize that my days are numbered; I will live forever, but this body is just dust.

I just rewrote that last paragraph; what I wrote months ago (but don’t really remember writing it) made me sound like a bit of a pessimist — a the-glass-is-half-empty kind of guy — and I don’t think I typically think that way. I guess that’s one of the things that cancer does to you, makes you think differently about life; I don’t take for granted that I’ll live to 90 any more (in my younger days I joked that 30 was dead, and was surprised when I actually hit 30.) An early demise is a very real possibility, from cancer or from any other cause for that matter, but it’s wrong to dwell on that. God graciously gives us every day of our lives, no more, no less.

Since surgery though I’ve visited with the surgeon once — all is well — the oncologist twice. I had a CAT scan in the spring, which was clear, and Dr. Bleeker said my blood work was “stellar”! The most recent visit with the oncologist only involved blood work, and the only anomaly there was a low Vitamin D level — a normal level is between 30 and 200, but mine was 23. Low Vitamin levels are associated with cancer, but whether it’s a cause or an effect of cancer isn’t clear. Why mine is low at the end of summer is a bit of a puzzle though; I do get outside, but I also tend to stay in the shade. I also take a 1000 unit Vit. D supplement every day. Dr. Bleeker put me on a 50,000 unit megadose once a week for 8 weeks to see if we can boost those numbers a bit. We’ll see. My next appointment is in November, long after the last of the megadoses, and long after the last of summer. This time I meet my old nemesis, the PET scan machine. This time with a happy pill, and more importantly, without the Hannibal mask.

Since surgery I’ve also visited with an oral surgeon about having some bone reconstruction done and having tooth implants installed. I’m still unsure about having that done though. The doctor wasn’t sure if the bone in my jaw would be stable enough for grafting and an implant after the cancer and radiation therapy damaged it, so took some time conferring with colleagues and the radiation oncologist about it. I’m also nervous about having anyone dig around in there again; during the biopsy in April of 2013, the nerve in my jaw suffered some damage, which left my lower lip numb and tingly ever since. I dread the possibility that it might get worse. When I last spoke with the ENT doc who did that biopsy he said it probably won’t get any better, but I should be happy that it’s not worse; some patients end up with the muscles paralyzed as well. I really, really, really don’t want that. The whole reconstruction and implant process would likely take about 9 months and cost roughly $7,000. I got approval from our health insurance carrier though, which was a welcome surprise, so that would help considerably, but I’m still hesitant…

It was really good to be able to do “normal” stuff this summer. I am able to go out in the sun and do normal summer things… Last year I had to minimize my exposure to direct sunlight as much as possible; I was surprised at how much I missed doing that, and how much I’ve enjoyed the feeling of the sun on my skin. And this spring/summer we’ve done some nice normal things, like go on vacations. Yvonne & I flew to California in April for a long weekend, and in May we drove to North Carolina with the whole family. I got to dip my toes in both the Pacific and Atlantic oceans, which I don’t think I’ve ever done before, let alone in the same year.

With all of this cancer business almost a year behind me, I’m thankful for all that’s happened, thankful for all the people that were involved in my cure, and most thankful for the blessing of a great God who watches over us all, and was fully involved in my cure. And it is in Him that I trust the rest of my days, whether they be many or few. Thank you, Lord.

There has been a story in the news the last couple of days about a 29 year old woman with terminal brain cancer who has chosen the path of assisted suicide to end it all before the pain she’s been told she will have becomes unbearable. Brittany’s story is a heartbreaker, and I can understand her desire to avoid what’s likely in store for her, but I still disagree with her choice. I read an open letter to Brittany today that does an excellent job of expressing my thoughts on the subject; I hope she reads it, and I pray with the author of the letter that she will ask “the question that is most important. Who is this Jesus, and what does He have to do with my dying?“ After my ordeal with cancer and its treatment, I’m convinced that God teaches us the best things through the hardest circumstances. Walking the valley of the shadow of death will be a lesson that none of us should miss.

Mundane Faithfulness

I have a mass on my right kidney, which was found somewhat accidentally during the diagnostic work done for the lymphoma in my jaw. That mass was assumed to be a typical renal cell carcinoma nodule. Treatment of renal cell carcinoma is usually pretty straightforward; partial or complete nephrectomy (removal of kidney tissue.) With that assumption, I went into the first meeting today with my urologist, Dr. Hofer, optimistic that being cancer free was just around the corner. Sure, getting there involved surgery, most likely a robotic-assisted laparoscopic partial nephrectomy, but compared to the chemotherapy and radiation therapy I’ve already been through, that should be a breeze. Relatively speaking, of course.

But, again the words “unusual” and “different” and “interesting” came up during the appointment. Dr. Hofer said my case would make a good trick question in a urologists’ exam. The curve ball that made him question the off-the-cuff diagnosis of renal cell carcinoma is the fact that I’ve already been treated for lymphoma, combined with what he saw in the PET scan; the mass just didn’t look like a typical renal cell carcinoma. He’s been doing this stuff for 20-plus years, and has seen a fair number of them, so he ought to know what they look like. He also said that lymphoma will occasionally grow on the kidney, and is easily mistaken for something else. But unlike renal cell carcinoma which is usually a contiguous mass and easily removed, lymphoma is more diffuse; surgical removal is less effective because the tumor’s boundaries aren’t well defined, and it often metastasizes to other organs.

So, given my history and the physical appearance of this particular mass, Dr. Hofer suggested performing a biopsy of the mass before diving in and cutting out a chunk of the kidney. If the biopsy shows that it is indeed renal cell carcinoma, then I’ll go back in for the partial nephrectomy. But if it turns out to be lymphoma, I will still have both my kidneys intact, and will go back to Dr. Bleeker and Sanford Oncology for more treatment. I’m not looking forward to that, but…

The biopsy will be done by one of the Sanford Radiology docs; they’ll use an ultrasound to guide a probe to the proper spot on my kidney to get a sample of the mass. Much less invasive than laparoscopic surgery, but will still require an overnight stay at the hospital. We don’t have a date just yet; should find that out tomorrow.

It’s a bit of a disappointment; here I thought I was a surgical procedure away from being done with this stuff, but now we’re faced with more questions and more diagnostics to try & get some answers.

Wow; thought I hit publish on this one already. Now it’s old news (so I guess that would be “olds” instead of “news”?) I got some really good news from Sanford Oncology following the PET scan two weeks ago; the lymphoma in my jaw is gone!

I’m still not out of the woods, but it’s definitely a step in the right direction. There is still the mass in my kidney to be dealt with, so I have an appointment with a urologist in a couple of weeks to talk about the options for getting that removed (more on that when I know more.)

As for the lymphoma, since things are clear, I only need to return to the oncologist in three months for a checkup, then go back for another PET scan in six months.

Life is good. God is better.

It’s been a while since my last update, so I suppose I’m way overdue for another. Actually, this post was started weeks ago, but it never seems quite finished, and instead of just finishing it, I find myself going back to it again & again and revising big chunks of it. Even the post title has probably changed a half-dozen times… Probably not the most efficient way to get the job done, but… It may have ended up a little on the wordy side too; just a warning. Good thing I don’t charge by the hour or by the word.

My last post ended with the results of my second PET scan in late June. While the procedure was a little rough, it yielded some good news; we had gained some serious ground on the cancer in my jaw, and we were ready to roll into the next phase of treatment, radiation therapy. Those treatments weren’t much more fun than the last PET scan, and even now, seven weeks out from my last treatment, I’m still feeling the lingering side-effects. The positive side of this in between time is that I haven’t even seen the inside of a hospital, clinic or infusion center since July 25 (happy dance!) My next appointment is for blood work and a third PET scan on September 18, followed by a visit with my oncologist to go over the results. It’s been really good to not be picked on for a while after about 17 weeks of being poked, prodded, gouged, scanned, pumped full of toxins and and being irradiated by a linear accelerator. Recovery from the radiation seems to be much slower, but I’m finally starting to feel closer to normal (whatever that is; I think I forgot.)

To recap what has happened since that last scan…
(more…)

Another very tardy update; the last few weeks have been, um… eventful.

Four weeks ago I had my first sit-down with Dr. McGraw, the radiation oncologist. There was a bit of a snafu in the scheduling, as he would’ve preferred to have seen me after my PET scan (which was done the following Thursday morning; more on that later) so he didn’t have a full game plan for treatment. He also said that he would be passing my case over to one of his partners because he was being deployed with the Air Guard and would be gone for the next three months. He did however take the time to explain things pretty well, so Yvonne & I were thankful for that. Knowing what he did of my case (two things you don’t want to hear from a doc; “I’ve been reading up on your case; it’s very interesting.” and “Wow, I’ve never seen [i]that[/i] before!”) he thought that a course of 18 daily radiation treatments over a span of three weeks ought to do the trick to completely eradicate the cancer from my jaw.

The treatments would be aimed at my jaw, and should only affect that immediate area; the side effects didn’t sound like much fun (and haven’t been) but he didn’t think it would interfere much with life & work (they haven’t, much) and should be effective. The daily thing was kind of a surprise, but he explained that doing smaller doses daily is far easier on the body than larger doses spaced further apart. I think I can accept that; I won’t enjoy it, but that pretty much goes without saying.

Following the appointment that morning I was also fitted with my Hannibal mask. They don’t call it that, but I will because that’s the first thing that came to mind when I saw it; it’s a form-fitted mask that helps to keep my head stationary during the radiation treatments, and also allows the techs to mark it up with reference points so they can be more consistent from one treatment to the next (which is better than marking me!) It’s made of a plastic mesh that starts out flat and becomes pliable when warmed up. The techs draped the warmed mesh over my face, then fitted it to a u-shaped plate that clamps to a hard plastic headrest. This isn’t mine, but looks an awful lot like it:

Since the tumor is on my lower jaw, they also want to keep my mouth from moving, so I was fitted with a mouthpiece, which is similar to a football bite-guard except it has a flat plastic piece in place of the part that would normally form fit around the lower teeth. After the initial fitting, the bite-guard was attached to the mask; the two combined, with the mask clamped onto the headrest, with me in a supine position on the table made for an extremely unpleasant confined feeling.

They did a quick CT scan of my head that first Tuesday, and in the few minutes that it took I nearly gagged on the stupid mouth guard. The bite guard obstructs my tongue’s movement, and that combined with the way the mask fits around the bottom of my chin made swallowing really difficult. And that combined with laying flat on my back on the table made for a few moments of near panic. I made it through the CT scan, and was so glad to finally be released from the thing I failed to say anything about that. Later I assumed that at some point we would take some time to get the mask & bite guard to fit better… Wrong assumption.

During our visit Dr. McGraw mentioned that he wanted to use that mask for my second PET scan in order to get more accurate results; I was still hoping that there might be some adjusting we could do with it, but when the nurse trotted that thing out on Thursday morning it was pretty clear that wasn’t happening. They got me ready and slapped that puppy over my face & told me to relax, the test would take 20 to 25 minutes. That’s when I nearly lost it.

I was to have nothing but water for six hours before the PET scan, and part of the prep involves drinking a thick sugary goop. That made for a bit of sticky gunk in the back of my throat that was hard to swallow. Add to that the bite guard in my mouth and the part of the mask wrapping under my chin and it was extremely hard to swallow. I’ve never considered myself to be claustrophobic, but I’d never been this restricted before (having my arms strapped to my sides didn’t help that either.) I knew I wouldn’t be able to make it five minutes, much less twenty-five minutes, so I grunted and kicked and did whatever I could to communicate to the nurse that it wasn’t gonna fly… She pulled the mask off and I nearly hyperventilated, so happy to be able to breathe again!

I explained the difficulty I was having, so she went to ask about adjusting the thing; she came back saying the word was ‘no’ on adjusting, but the doc relented on the mouth guard, and she pulled it off of the mask. The mask was still somewhat restrictive, what with the part that wrapped under the chin, but I somehow made it through the procedure by praying, reciting what I could of the 23rd Psalm (sure felt like the valley of the shadow of death!) and counting. The PET scan operates by making scans of small sections of the body, as if it’s a great big meat slicer (that thankfully doesn’t actually cut anything.) From the counting I determined that it took around three minutes for it to scan a section of my body; then the table I was on would move forward six inches or so, then it would scan the next section of my body. I lost track of how many times it moved, but if my one-second counts were accurate, it was about three minutes between each move.

Even with the counting and praying, there were still a few moments where I was this close to bailing out; swallowing was difficult, breathing was difficult, I was getting a kink in my neck from the plastic headrest, and having my arms & legs strapped down was just a bit too much. But I did make it through. Later on I realized another factor that made the earlier PET scan so much easier; Dr. Bleeker prescribed a sedative for me to take in preparation for the test. I think the mask would still have been a problem if I’d had the sedative on board, but I have no doubt that would’ve helped.

Later that same afternoon we met with Dr. Bleeker to go over the results… The PET scan basically measures the glucose uptake of cells in your body. To do that, a radiotracer is injected into the bloodstream; for cancer detection, the radiotracer used is FDG (fluorodeoxyglucose) tagged to glucose. Cancers absorb glucose differently from normal tissue, and the PET scan is able to detect those differences; in reading the PET scan, a radiologist reads the scan results and grades the “glow” of an area in SUV (Standardized Uptake Values). When I had my first PET scan back in April, the glow in my jaw was a 10; following chemotherapy it was 3. Considering the fact that normal or benign tissue has an SUV of 2.3, I’d say we’re heading in the right direction.

I started writing this post about three weeks ago, and am just now finishing it up. I could go on, and tell more about the radiation therapy, but I think I’ll just post this and start a fresh post on that topic. Pretty sure I can finish it in less than three weeks. 😉

The first biopsy that was done to remove the tumor from my jaw had relatively few adverse side effects (other than a day or so of feeling like I was clopped in the mouth by a horse), but I wasn’t so fortunate following the second biopsy. One of the things the surgeon warned about was possible injury to the mental nerve, which passes through the mental foramen — a passageway just below the area where the tumor was excised — and then branches out to provide sensation from the skin of the chin and the lower lip.

The first oral surgeon did a decent job of staying clear of that nerve — he probably held back a bit after realizing it wouldn’t be possible to dig the whole tumor out once he got in there… But ever since the second biopsy, my lower lip has had that weird tingly feeling like you get when your foot or hand is in a weird position for too long and “goes to sleep”. It feels weird, but it at least works as it should; no problem with muscle control, only sensation. When I eat, it’s hard to know if there is something stuck to my lip, so I tend to keep a napkin handy to make sure there’s nothing embarrassing going on with food on my face!

The really weird thing is that it’s like there are some wires crossed in the nerve bundle; when I brush my teeth and the brush moves past my lower lip near the area where the teeth were removed, it feels like I’m brushing my chin too. I get a similar sensation when licking my lips; when my tongue moves left to right across the inside of my lip, it feels like something is moving right to left across the front of my chin. And when I drink a glass of cold water & allow the water to swish down between my lower lip & gums, I get a cold sensation on my chin, like the water is dribbling down my chin. Almost like a dribble cup that follows me around everywhere!

I brought the problem up when I last met with Dr. Stanos three weeks ago, but he had nothing to offer other than he’d never heard of that before. I really hate it when the professionals say things like that; tells me that this is the way it is, and unless it somehow heals itself, I’ll just have to learn to live with it.

It also reminds me of how fearfully and wonderfully we are made, and how even with the advances in technology and medical science, there is still so much about the human body that is still a mystery. I have to laugh at the people in the science community who play like they have it all figured out and there is nothing that we as humans can’t conquer. They play like they know the origin of everything and how it evolved to the point we know today, and we just need a little more time or more sophisticated tools to figure out how to cure all things. In reality we humans are just pikers compared to the Designer of these wonderful things. Modern medicine is wonderful stuff, but in many ways it’s little more than hacking; we know enough to mess with or fix a few things, and enough to be dangerous, but it seems there is far more that we don’t know than we do. Our vast knowledge store is just guesses at how things came to be. Only God knows the bigger picture of how he created all things and how they all work together.

For the foolishness of God is wiser than men, and the weakness of God is stronger than men.
I Cor. 1:25