What's davintosh? Mostly just the random ramblings of a hopelessly distractible… Hey, what's that?

Blessings — Laura Story

Filed under: Medical Adventures,Memory Music — Tags: , , — dave @ 10:12 pm 2015/03/05

Last year a friend (with connections) gave us some tickets to a concert that she wasn’t able to attend. The headline act was Casting Crowns, with Laura Story and For King And Country warming things up. It was kinda funny because I had heard of Casting Crowns, but really couldn’t pick any song that they had done. Once the concert got going it was like, “Yup, I know that one,” and, “Oh, I really like that one!” and “That’s their song? Cool!

It was the same story when Laura Story was on stage; I can’t say I’d ever really heard her name before, but when she started singing her song, Blessings, it nearly brought me to tears. That song was a constant reminder to me while going through chemo & radiation treatments in 2013 that, while things weren’t great, they were pretty darned good, and far better than they might have been, had not God intervened. “What if trials of this life are Your mercies in disguise?

We take so much for granted, and complain so much when things get uncomfortable. We too easily forget how good God is to us.

Alive Inside

Filed under: Family,Favorite Things,Fun!,Memory Music — dave @ 9:35 am 2015/03/04

Alive Inside is a documentary about the power of music, and how it connects people with who they are and who they have been. Dan Cohen, the founder of the nonprofit organization Music & Memory, uses music to help dementia patients recover lost memories; “to demonstrate music’s ability to combat memory loss and restore a deep sense of self to those suffering from it.” Here is the trailer for that documentary:

The documentary came out last fall, and the trailer has already made the rounds on the blogosphere; from what’s written on the website, it sounds like they are still booking showings, but a few weeks ago I stumbled across a link to a YouTube video of the entire documentary. The one I watched has since been pulled down, but others are likely to crop up and can be found easily enough.

I had seen the trailer before, and watching the documentary reminded me of the question that came to mind after seeing the trailer; what if we had done this for Mom in the years before Alzheimer’s disease robbed her of her self? Alzheimer’s and the accompanying dementia are terrible things, but what if listening to some Tommy Dorsey or Bing Crosby or Glenn Miller might have allowed her to maintain her cognitive abilities just a bit longer? It would’ve been worth a shot. It might have kept Mom’s mind together long enough to give my kids the chance to get to know her a bit. The disease would’ve still ravaged her body, but I would give about anything to have been able to give her a sound mind through all of that or even some of it. Mom loved music from the WWII era, and I’m sure she would’ve responded just as the people in this documentary did.

The second thing that watching this documentary got me to thinking about is how I might help myself ahead of time if I end up going down the dementia road later on. I don’t wish for it, but considering that it’s what took Mom and Uncle Bud, it’s not outside the realm of possibility. If I do, I’d like people to know the music that moves me. From the documentary it looks like they picked the music that fit the generation of the patients best, but what if there was a song in the playlist they loathed? If those people are anything like me, there are certain songs that are more meaningful than others, and it only takes a few notes from the melody to bring memories flooding back.

To that end, maybe somewhat selfishly, I’m going to start a new thing here on my blog; when I hear a song that means something to me, I’ll post a little something about the song and what it does for me. With a little planning, the list that grows from this idea will stick around long enough to be of some help to my family if I ever end up in memory care. And if the list outlives me, it’ll provide some fodder for the people planning my funeral.

The rules I impose on myself will be simple; 50 words or less, no links needed, but ok if included, and one song per post, mainly to keep things simple so that I can do it quickly from my phone if the computer isn’t in front of me. I’ve added a new category for the list — Memory Music, under Favorite Things — so keep an eye, or ear, open for the first volley.

The Best Christmas Present

Filed under: Medical Adventures — dave @ 10:16 pm 2014/10/08

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

Robotic-Assisted Laparoscopic Partial Nephrectomy

Filed under: Cool Technology,Medical Adventures — dave @ 11:00 am 2013/12/15

That right there is a load of $20 words, but it’s just a fancy way of saying “cutting a chunk out of the kidney without the doctor having to stick his hands in in your side.” It also describes some pretty cool technology, and it’s what they call the procedure that I’ll be going through tomorrow. But before I get into that, a quick (and belated) update on what’s happened since my last post is in order…

I checked in at the Sanford Surgical Tower (no idea why it’s called a tower; it’s not) on October 22 for the biopsy on my kidney tumor, and the procedure went very smoothly. The results came in two days later; the tumor is just a run-of-the-mill renal cell carcinoma, and can be removed surgically. That was a big relief; the thought of another round of chemo and radiation was more than I wanted to think about. I could handle it, with God’s help and that of great friends & family and an even greater wife, but if I had my druthers… Nope. I did a happy dance when I got the news!

So with that news in my back pocket, we met with the surgeon, Dr. Ahrend, a few weeks ago to discuss the next step; surgery. The urologist I spoke with first, Dr. Hofer, said that I was a good candidate for robotic laparoscopic surgery instead of “open surgery”; open surgery for a nephrectomy, partial or full, involves an incision that follows the bottom of the ribcage from the chest around to the back, half way around the torso. That was the way they did things in the days before laparoscopy, and what they still do with some patients that don’t meet the physical requirements for a laparoscopic procedure. The surgeon needs full access to the kidney, and that just isn’t possible without a huge entry point like that. The beauty of laparoscopy, and robotic laparoscopy in particular, is that the surgeon can get that full access to the organ without having to make an incision big enough to see through and to get a pair of big mitts into. Laparoscopy lets the doc manipulate tools inside the patient while watching what’s going on by way of a video feed a pair of miniature cameras. Adding the robotic angle to it makes it almost like climbing right inside…

Dr. Ahrend is a pretty young guy (as can be seen in this KELO news bit) but he is also the best guy in the business in Sioux Falls. He’s done over 700 robotic procedures since residency, and makes it sound like mine will be somewhat routine. While chatting with him at the end of our appointment, he commented that he likes to tell his mom, “all those video games are finally paying off,” and that is a good (but not great) description of how he does the laparoscopic nephrectomy with the assistance of a pair of robotic “hands.”

The “robotic” part is a little misleading though; that term has connotations of the process happening somewhat autonomously, and this machine is anything but automatic. It’s more of a bionic surgery by remote control. The history of the procedure is pretty cool; I’m told it originated with the military, with the idea that a patient who was wounded on the front line could be operated on without having to be transported far, and the surgeon could work from a safe place far from the front line. So far it hasn’t been used in that capacity, but there has been at least one procedure done over a long distance; the surgeon was in New York and the patient in Strasbourg, Germany. The big problem that can keep something like that is latency, the amount of time it takes for a signal to get from the controller to the robotics and the return trip for whatever kind of feedback signal is used. Apparently it was acceptable in this experiment, and in a normal procedure where the surgeon is in the same room as the patient, it’s seldom a problem, but that’s the sort of thing that would keep a networking guy up all night.

When doing a robotic procedure like this, the surgeon has a stereoscopic view of things through a video feed from a pair of cameras that are inserted into the area being worked on. The console that he works from has a pair of video monitors with a divider down the middle to give the surgeon a 3-dimensional view of what’s going on inside; depth perception in the surgical site is crucial.

The tools that are used are remotely manipulated by the surgeon using specialized controllers in the console; much more sophisticated than any joystick or video game controller, because what’s being controlled is much more sophisticated than anything in any shoot-em-up/crash-em-up video game. And the stakes are much, much higher than any video game.

Notice the scale of the little scissor tool in the hand of the model, then watch the video below; the surgeon’s hand movements are scaled down while his view of the surgical site are magnified so that he has a better view of things and a higher degree of control over the tools he’s using.

This YouTube video is pretty fascinating to watch, as it gives a view of exactly what the surgeon sees through his live video feed, and lets you see the dexterity of the robotic tools. It’s especially interesting because the case is very similar to my own; a male patient in his 50’s with a 2 centimeter mass on the upper quadrant of the right kidney. The video is not for the faint of stomach, as you see all the blood and gore and cutting and yuck, but it’s very informative for the same reasons. You’ve been warned!

Watching the video doesn’t give one a very good idea of how things are arranged for the surgery and where on the body the incisions are made. I’m told they make five incisions for the tools to be inserted, and from the photos & videos I’ve seen they go in from all directions. It would be interesting to attend a robotic surgery while conscious to see exactly how it’s set up and done.
Another pretty cool tool that Dr. Ahrend will be using is Firefly Fluorescence Imaging technology. With Firefly, a dye is injected into the bloodstream during surgery, and when a black light is used to illuminate the surgical site, normal tissue will fluoresce bright green, while cancerous tissue appears dark. Under normal lighting conditions it’s difficult to tell the difference between normal and cancerous tissues; the contrast that results with the Firefly dye and black light helps the surgeon know with a higher degree of certainty that all of the cancerous tissue has been removed. They also use ultrasound to help delineate the boundaries of the tumor, but adding Firefly to the surgeon’s tool belt helps immensely in making sure they get all of the tumor the first time, and don’t remove any more kidney tissue than is absolotely necessary.

Here’s another video from the Shawnee Mission Medical Center that demonstrates the use of Firefly, and gives a great demonstration of what happens before the surgeon starts digging around inside, and a good view of some of the equipment used.

That brings us to today, the day before surgery. All in all, I’m pretty relaxed about the whole thing. It’s a little weird (scary weird) seeing all of that and knowing it’s what they’ll be doing to me tomorrow, but I’m ok with it. After all I’ve learned about the procedure, it’s easy to forget how new this whole robotic thing is, but the doctor’s confidence in it is pretty contagious. And knowing that I don’t have to deal with the aftermath of open surgery is huge!

My biggest comfort in all of this though is knowing how many people are praying for us. It’s really a humbling thing being on the receiving end of all that, but the prayers really do make a difference. I am extremely grateful for each and every person lifting us up, and for their concern for us. God is faithful, and I trust that he will see us through this. As for the recovery, I’m really looking forward to some time off; I’m taking two weeks of medical leave from work. It seems like such a long time since I’ve had any time off from work where I wasn’t busy ahead of time getting ready for going somewhere. This time I’ll just be at home, resting. For now though the waiting is the hardest part. Nothing like a bit of anxiety over the procedure, mixed with fasting from everything but clear liquids for the 24 hours leading up to it, plus an enema waiting for me tomorrow morning. It’s gonna be a Monday like no other.

I’m actually looking forward to getting this surgery done and out of the way. I may be speaking too soon, but I think the surgery and recovery will be a walk in the park compared to chemo and radiation. The thing I’m really looking forward to is hearing the news that I’m cancer-free. That will be worthy of a celebration!

Here are some other links that I found to be of interest when researching this topic. Again, many of them show actual surgical procedures, so click with caution.

Information on kidney cancer
News4 da Vinci partial nephrectomy with Firefly
HD Robotic Partial Nephrectomy using “Firefly” Fluorescence Technology
Firefly Fluorescence Robotic Surgery With da Vinci
Robotic Partial Nephrectomy performed by Vipul Patel, MD

The Kidney

Filed under: Medical Adventures — dave @ 11:39 pm 2013/10/15

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.

All Clear

Filed under: Medical Adventures — dave @ 8:25 am 2013/10/02

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.

The In-Between Time

Filed under: Medical Adventures — dave @ 12:50 pm 2013/09/12

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…

Some Serious Progress

Filed under: Medical Adventures — dave @ 1:43 pm 2013/07/24

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. 😉

Godspeed, Ken

Filed under: Faith & Worship,Medical Adventures — dave @ 5:37 pm 2013/07/12

A good friend — Ken — found an end to his earthly suffering today, losing his battle with mesothelioma.

I’ve known members of Ken’s family much longer than I’ve known him, so it feels like I’ve known him forever. In reality though it’s only been about 15 years or so. Ken is a few years my senior, and has been retired longer than we’ve been acquainted. He’s not exactly an official mentor, but he has mentored me on many levels, usually unintentionally. Such a great guy; quiet, humble, honest… Seems like they don’t make men like anymore, or at least not as often.

Ken’s mesothelioma diagnosis came long before I was diagnosed with DLBCL, but we somehow ended up on the same rotation for chemotherapy; I counted him as my chemo-buddy. Mesothelioma is a much different and more aggressive cancer than DLBCL, and his fight was simply for a little more time; there is no cure, and the chemo only slowed its advance until it outsmarted the drugs. He had explored lots of treatment options in the last few months at Sanford Cancer Center and at Mayo Clinic, but the doctors said there was little more they could do for him and he wouldn’t likely see Christmas. I really hate it when they are that right.

The last time I saw Ken was two weeks ago this Sunday; Ken was admitted to the hospital a week earlier, and Yvonne and I stopped to visit, staying much longer than we had intended. I’m glad we had that time with him. Ken looked good that day, alert but a bit sleepy from the drugs helping to control his pain. The cancer had spread to his abdomen and had formed several tumors which were collecting fluid and causing a lot of pain. He and Harriet were so grateful for and hospitable to every visitor; the embodiment of graciousness. The strange thing was that only three weeks earlier at our last chemo session he looked great and was in no pain at all. That was five weeks ago, and today he’s gone. I just can’t wrap my head around that.

But Ken was well grounded in his faith in Jesus Christ, and there’s no doubt he’s in a better place now, free of pain and worshiping at the Throne. It’s hard though, knowing I won’t see him again, and knowing how difficult this will be for his family. Still, I envy him just a little… But I know it’s not my turn yet; God still has a job for me here, so I wait patiently for him to call me home, and try to become what he wants me to be.

Fear & Wonder

Filed under: Medical Adventures — dave @ 11:07 am 2013/06/07

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

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