davintosh

The weekend following my first chemo treatment — Days 4 and 5 — proved to be a bit tougher than days two and three. The first two days seemed to go pretty smoothly. Other than not sleeping well (probably attributable to the Prednisone) and in turn sleeping in kinda late, I made it to work both days. I kinda hit a wall towards mid-afternoon on those days though, so didn’t put in a full 8 hours on either day, but for the most part I felt ok and was functional. Encouraging comments from others about how I looked, and just being at work that quickly after chemo made me start thinking that this treatment wasn’t going to be a big deal at all.

Then came the weekend…

Cancer cells become a problem because their division happens at a rapid and uncontrolled rate, so the toxins that were dumped into my system are designed to affect the process of cell division. One of the unfortunate side effects of the chemotherapy is that any normal cells that are supposed to replicate and replace themselves rapidly stop doing so. Over the weekend I became painfully aware of the most notable places where that happens; the palms of my hands, the soles of my feet, and my mouth. Saturday was really the first I noticed any of that; my tongue started feeling kinda raw, and my feet and hands became especially tender. Walking any distance was uncomfortable, and anything that I did that stressed the skin on my hands just hurt. I thought it strange that that was the case with the feet and hands, but it makes sense I guess since those are parts that see a lot of wear, and if the skin isn’t replenishing itself as it normally would, it just wears out. Of course, I was told all this on Day One, but had forgotten about it, or at least how much it would affect me.

And on top of all of that, my energy level was at an all-time low, or so it felt. Just doing some routine stuff around the house on Saturday morning left me feeling totally shot. Resting helped, a little, but there wasn’t much there. The weather was so nice, and with the recent ice storm there was a lot to do outside, but one of the other things that cancer patients are told is to stay out of the sun, so I felt like the sickly little kid watching his buddies play ball through the window; wasn’t much fun. All of that added up to one big colossal pity party. I’ve been told that I’m entitled to a few of them, but it doesn’t make it any easier.

Later in the afternoon, when the sun wasn’t so high in the sky, we went out for a walk. Our usual route takes about 40 minutes, but Yvonne knew I wouldn’t be up to that so changed things up to cut through Spellerberg Park & make it about 20 minutes instead. Walking up little inclines felt like hills, and the “huge hill” that had to be climbed to get home just about did me in. No energy. I have to admit though that after that walk, and a short rest afterward, I felt much better. I slept a bit better that night as well. Tired is good in a way, I guess.

The lesson from all that was that I’m not so tough, and this chemotherapy thing isn’t easy. I did receive a lot of encouraging words from friends who have been there, and that helps immensely. Tim has been through two bouts of prostate cancer, and had this to say last night:

Know that there will be tough days… followed by better weeks.
There was always a time lag after a treatment for me: first day or two were fine… then sick for a day or 2-3, then better for a week or 10 days.

As long as you know what to expect, it gets much easier.

That last line should be bolded, italicized, underlined, highlighted, and emblazoned in red; knowing what to expect is huge. The unknown is the worst. Now that I’ve been through one treatment, I know better what to expect. Today, Kathleen told me that when she went through breast cancer treatment, she found there was a slightly cumulative effect from the treatments; each successive treatment hit her a little harder. I think I can deal with that, especially when having somewhat of a baseline expectation. And above all of that I need to remember not to expect too much of myself, and not to push myself too far.

Back to last weekend: Sunday went much better. When I hit that wall on Saturday, I resigned myself to the fact that I wasn’t going to accomplish much on Sunday, which is as it ought to be, so planned to just stay home from church and lay low the whole day. There were some things going on at church that I wish I could’ve attended, but the admonition to avoid crowds was pretty strong; too many germs floating around that can wreak havoc on a compromised immune system. Yvonne & Caleb did go to church, so it was nice to have some quiet time on my own; wish I could say that I made good use of the time, but I can’t, other than just recuperating from Saturday. Yvonne came home with smiles on her face from all that went on, which really lifted me up as well.

And now it’s already Tuesday; Week One is nearly done, and today felt almost normal. Ready for Week Two!

“Hello. My name is David Thornton. You killed my father. Prepare to die.”*

That’s a photo of my dad from somewhere in the 1930s or ’40s (handsome fellow, isn’t he?) In the fall of 1986, I was just a young newly-married pup, and my dad was diagnosed with lung cancer. He knew something was very wrong much earlier than his first visit to the doctor, but was really reluctant to have it checked out, so the cancer was pretty advanced by the time they started his treatment. He died in June of 1987.

That was kinda like the Iron Age in the science of cancer treatment; the drugs used were effective at killing the cancer, but the dosages tended to be high, and the collateral damage on good growing cells was really high as well. I’ve often wondered if it was the cancer that killed Dad or the cure, but since the cure wouldn’t have been administered without the cancer, the cancer is still the enemy.

Considering the advances in cancer treatment over the last 27 years, I’m confident that the odds of a win in my case are a lot better. The photo below is from 1984; he planted & cultivated 30-some acres of corn with horse-drawn implements, just like his dad did when he was a boy. He always wanted to do that (but realized quickly that there was a reason his dad bought a tractor for the farm when he was twelve!) I still miss Dad, a lot sometimes. You know how they say a man never really appreciates his father until he hits his mid-20’s? That was me. Cancer took Dad from us, from me, before I could really get to know him as a man. This fight is personal. Not just in a vengeful kind of way, but I don’t want to let that happen to my sons.

My cure got kicked off this week; got my PICC line installed on Tuesday, and had the first chemo infusion on Wednesday. Still feel ok, at least functional, afterward, but it was a heck of a day.

All in all, things went pretty smoothly today; the first of the four drugs in the R-CHOP treatment was Rituximab, and it took the most time because it’s the one that’s most likely to bring about nasty side effects during infusion. The nurse went over all the possible side effects of all the drugs beforehand, but there was one point where I suddenly felt a bit warm, so Yvonne stepped out of the room & asked the nurse for a damp washcloth; within 30 seconds there were three nurses and a nurse practitioner in the room. I guess I didn’t realize feeling a bit warm was one of the first warning signs of a reaction to the drug (she had said “hot flashes” earlier, and that didn’t register just then!) but by the time they started asking questions, I had also started to feel a little queasy (which I did remember) so their sense of urgency was spot on! They turned off the pump for about a half hour while the anti-nausea med they gave me went to work, and everything went pretty smoothly after that. Started at 8 am, finished at about 5:20. Heck of a day! I missed a follow-up appointment with the doctor that did my second jaw biopsy surgery, but I’m not having troubles with that (other than getting impatient with the stupid stitches in my mouth) so they didn’t feel we even needed to reschedule.

The evening after, could feel my pulse when I lay my head on the pillow, and sometimes my hands seemed to throb with my heartbeat; I’m guessing that has to do with the volume of fluid that was pumped into me throughout the treatment. That probably has something to do with the nagging headache I had that evening. Nothing major, but it was there, and probably understandable, and will likely go away as my organs absorb all that extra fluid. One of the drugs that went in yesterday was colored bright red; it’s a good thing that the nurse warned me that I would be peeing orange for a while after, because she was right, and it was a tad shocking at first. That and the headache were bearable though after feeling a great disturbance in my jaw, as if the voices of millions of tiny cancer cells suddenly cried out in terror and were silenced. I like to think we’re making some progress.

But… From what the nurse told us at the beginning of the day, the real symptoms probably won’t show up until the first part of next week; that’s when the toxins will start to kill off the cancer cells, and the collateral damage starts to make itself known. I’m tentatively planning to go to work today (Thursday) and doing as much as I am able, without overdoing it. It’s not like the work of a mouse herder is all that strenuous. The fifth drug in the R-CHOP regimen is Prednisone, which is a steroid. It’s in the mix because it helps the other drugs do their jobs more effectively, but has the side effect of making you feel like a million bucks. I don’t know if that’s the case yet, because it also makes you a bit hyper & jittery, so taking it at 5:30 in the afternoon wasn’t recommended. I get five days of that; I’ll post something on that stuff later.

The one thing I’m not terribly excited about is this PICC line; it was installed on Tuesday, and is the channel through which four of the meds are administered, but it’s a bit of a pain. It stays for the whole six weeks, and can’t get wet. It enters my arm on the inside of my bicep, just below where the armpit hair starts, so of course, the bandages protecting it caught all kinds of hair in it. And keeping it dry for showers requires tape to be wrapped around that same area; I ended up just trimming back that hair. Those were my complaints about the PICC line from Tuesday; today it’s less of a bother though. Getting the hair out of the way was big, but on Tuesday that was kind of the new irritation so all my focus was on the PICC line. Now it seems less of a bother, probably because I’m more used to it, but probably more that I’ve had the first round of chemo there are other things to focus on, and the PICC line is just background noise.

* For those who may not be familiar with that quote, it’s a paraphrase of a famous line from the movie, The Princess Bride, delivered by Mandy Patinkin playing the character Inigo Montoya. If you haven’t seen the movie, why the heck not? If not, no big deal, really; I may have watched it enough times myself to cover a small theater full. Watch the clips below to understand the paraphrase better, but best is to watch the movie! Or read the book. The movie is incredibly faithful to the book, so either way… It’s all good!

Well, we had an interesting day at Sanford on Tuesday of last week (and I’m just now getting around to finishing up the post…) It all started off with an early morning appointment with the Good Doctor Bleeker, where he did a quick once-over on me and asked about any issues that had come up since our last visit. Not much was new; my mouth is still a bit sore, not only from the surgeries and the missing teeth, but the other lower front teeth are still giving me trouble (double-portions of it a few nights since then; waking me up in the wee hours…) and, oh and by the way, there’s this weird rash that showed up about a week earlier.

The thing with the teeth wasn’t a big surprise to him, and didn’t seem to be much of a concern either. He surmises (as do I) that the issues I’ve been having with the teeth are caused by the tumor that remains in my lower jaw. The tumor is a very indistinct entity — it was only identifiable in the PET scan, but it is definitely occupying some space in the lower jaw — and as it grows it is moving things around, ever so slightly. It seems to be subject to external changes as well; changes in weather have caused increased pain levels, as did flying. Changes in altitude bring about pressure changes. The tumor is essentially replacing bone tissue as it grows, and the difference in density between the two materials is what causes the problems and the pain. Or at least that’s what the theory is.

The good news is that the upcoming therapy plan should eliminate the cancer that is creating the tumor that is replacing the bone in my jaw. But the bad news is that when the tumor is gone, there’s no guarantee that the bone will come back on its own. So I might be losing more teeth before it’s all said & done. And when it’s all said & done, I’ll have to go through some reconstruction to get my teeth and jawbone back. But first things first; let’s get rid of this sucky cancer.

Dr. Bleeker laid out the game plan for eradicating the cancer during that visit; the primary treatment will consist of chemotherapy, administered in three infusions separated by three weeks. My first infusion will happen tomorrow (April 24, 2013), and should wrap up six weeks from tomorrow. At that point we’ll reassess, and hit it with radiation therapy if it’s needed.

The chemo consists of the standard R-CHOP cocktail (click the link for details; this is getting too long already.) The doc says that the treatment has an excellent success rate with my type of cancer — over 90 percent fully cured — and that my general state of health, the chemo shouldn’t hit me so hard that it will keep me away from work too much, which is all very encouraging. What rattles me just a bit is that ~10 percent, and the fact that the doc had never seen this kind of cancer show up in this particular place and only in this particular place.

For now though, I’m operating on the positive, that 90 percent, and the desire to kick this thing’s butt. There are a lot of slightly selfish reasons behind that — wanting to spend more years with Yvonne, to see any grandkids that might materialize, etc… I’d also like to think I might be missed by some, and I hate to let people down.

Since being diagnosed with the dreaded ‘C’ word, people keep asking the question, “How are you doing?” or, “How are you feeling?” Weird as it sounds, it’s not an easy question, and most of the time the answers I give feel inadequate and sometimes trite.

I haven’t been started on any treatments for the disease just yet; everything so far has just been diagnostic work, so I don’t really feel much different than I did before the diagnosis. Physically I feel pretty much fine, with the obvious exception of the post-operative pain in my mouth, and feeling somewhat incomplete with those two teeth missing, and feeling out of sorts because of the medications I’m taking. And I’m always feeling like I’m missing out a bit on some of my favorite foods, because the pain in my teeth makes eating anything that requires chewing a bit difficult. I sometimes feel a little melancholy, and a little weepy when I’m feeling sorry for myself. But mostly, I’m just Dave. At least so far.

But when I think of the many ways that I’m blessed, I can’t help but be thankful. Thankful for the wonderful wife who puts up with my whining about all the things that are wrong, and puts up with my spontaneous pity parties… Not only is she a great wife and support through all of this, she’s also trained as a nurse; yes, this whole business is different than the world of labor and delivery where she works, but the fact that she is there listening to what the doctors tell me with her medical ears is more than huge. Likewise for my soon-to-be-a-doctor-daughter; it was a total God-thing that Emily was done with some of the heavy lifting she had in med school last month and staying at home while I was going through many of the diagnostic appointments in the last couple of weeks. Having them both with me at every appointment meant so much to me, I can hardly express it.

I’m also thankful for the many friends and relatives who have expressed their concern and offered to pray for me, and have prayed. Last week, a friend stopped me at church & said that if he had as many people praying for him as I did for me, he could do anything; I responded that I hate to think how much worse things would be if they weren’t praying for me… And it’s true; the effect of prayers of God’s people on my behalf has been huge, and very evident to me. Another friend at work last week said that when she was told of my condition after seeing me in the break room, she thought sure it was a case of mistaken identity because I didn’t look sick at all; on the contrary, she said I appeared to have a glow about me that was new… The glow certainly wasn’t me, as I haven’t felt all that great, so I can only attribute it to something else, and attributing it to the prayers offered on my behalf only makes sense.

I also need to say that I am thankful for a good health insurance policy. I was just looking at My Sanford Chart, which shows all of my medications, my appointments, and my billing information. So far, this whole adventure has cost upwards of $40,000, and it’s all been outpatient care. I haven’t had a single overnight stay at the hospital, and hope to keep it that way, because that total would be more than doubled if I had. Even so, insurance has covered all but about $1,300 of what’s been billed. I have no idea how we would pay that if not for insurance.

And that makes me extremely thankful for my job and my employer, without whom I would likely not have such good health insurance. And the people I work with have been extremely flexible with all the appointments I’ve had to keep the last couple of weeks, and have made it clear that I can expect the same as we head into the treatment phase of things.

I haven’t reached the point where I’m thankful for the disease that I have. Nor am I thankful for the unknowns surrounding this whole ordeal. How long will it take to get rid of it? Will I get rid of it? How did I get it? I suppose the answers will come, maybe. And there may come a time when I see how God has worked through this illness to build something better in me, but for now, I’m not so thankful for the trial.

At any rate, I think from now on when people ask how I’m doing or how I feel, I’ll just answer, “Thankful.” Mostly because I am. Thankful, that is.

Which I consider to be Some Good News. Or At Least Not Bad news anyway… Which is good, in a way.

Got a preliminary report back from the oncologist, Dr. Bleeker, yesterday; what I have is an early stage diffuse large B-cell lymphoma, and with all the testing, have only found evidence of it in the jaw. That is music to my ears! I’m definitely not out of the woods yet — DLBCL is still a fairly aggressive cancer, so I still have chemotherapy and probably radiation therapy in my future — but considering it’s been caught early and it’s only made itself known in that one spot should make the task of eradicating the bugger a bit less of an ordeal. But reading between the lines, it sounds like DLBCL is kind of a hopper where all the I-don’t-know-exactly-what-it-is kinds of lymphomas end up. So I’m not exactly sure what to think, other than trusting that God has it all under control.

Just to back up and recap on what’s happened since my last post, on Thursday of this week, I reported back to Sanford Hospital for another round of surgery. The goal was to reopen last week’s surgical site to dig out a second sample of tissue from my jaw. The worry was that the oral surgeon had been too thorough and there wouldn’t be enough left to give them the information they needed. They also wanted a bone marrow sample, and had originally scheduled that to happen on Monday, which made no sense to me at all; if they are putting me under for the sample from my jaw, why not take advantage of the opportunity and grab the bone marrow at the same time? That procedure is usually done in the office under local anesthesia, and it’s supposed to be a painful procedure; I have a relatively high tolerance for pain, but still prefer to avoid it when possible. Thankfully they were able to rearrange things so that both could be done on Thursday while I was sedated.

Got a good laugh from one of the docs though; I don’t remember his name, but he was a pathology resident, fresh out of med school, and he came into the room to give me the rundown of the procedure and the risks involved, and to get me to sign the consent form. Wow, was he nervous. Not a huge confidence builder, seeing him like that, especially when he said that he would be doing the procedure (with Dr. Putnam assisting), but he looked like the introverted type that was more comfortable and competent around the pathology lab than around people, so didn’t say anything. It was funny though!

In the end, the surgeon was able to get some good samples from the jaw, and the bone marrow thing went without issue. By the time all that was done it was about 3 pm; I was pretty shot when we got home and hit the sack until about 8 pm, then got up for a bite to eat. By 10 I was ready for bed again; those drugs do nasty things to a body, but still preferable to getting things done without.

Friday morning meant another trip back to Sanford, this time to the Van Demark Clinic for another test, a PET scan; for the PET scan, I was injected with a radioactive compound, and given another compound (bromide I think he said) to drink. I then had to sit quietly for 45 minutes for the stuff to circulate through my bloodstream in preparation for the scan. The idea is that the isotope somehow (magically) attaches to cancerous cells, and the PET scanner’s x-ray highlights those areas that contain cancer cells. Or at least that’s the gist of what I caught from how things were described. Funny how you put your trust in these people you’ve never met and let them inject you with this or that and run you through that or another machine, trusting that they know what they are doing. The PET scan machine was like the CT, but more like the MRI procedure; it took about a half hour, during which I was on my back being moved through a tube barely wide enough for my shoulders. Good thing I had taken a hydrocodone before the appointment, and was given a muscle relaxer when I got there; I was in a happy place!

So back to the good news; the PET scan showed no other hot spots, and the bone marrow tests came back negative. The samples from my jaw started to tell them what they needed to know, and all of that together with last week’s CT & MRI showed that the cancer is isolated to that spot in my jaw. Having a proper diagnosis is huge, and knowing that it’s just in that one spot is bigger still. I’m still in for a round of chemotherapy and radiation therapy, but knowing that it will be relatively minor is a huge boost. I was so pumped Friday night that I wanted to dance! It’s Sunday now, and I still feel pretty rough; my back hurts from the bone marrow extraction, and my mouth hurts from the biopsy there, and my lip is still numb & feels like it weighs about 40 lbs, but Friday’s news felt like a huge weight was lifted from my shoulders. Now that I’ve come down from the cloud I know I’m nowhere near out of the woods, but having the enemy identified and located feels so much better.

So very thankful that Dr. Bleeker took the time to give us the news before the weekend; couldn’t have picked a better doctor! And so thankful for so many friends and loved ones who have been praying; a good friend mentioned this morning that if he had as many people praying for him as I have had for me, he’s not sure what he could accomplish. All I can say is I hate to think what things might have been if people hadn’t been praying for me… The end result may have been no different — that God is allowing this to play out for some bigger purpose — or it may have made all the difference in the world. Either way, I am thankful. And humbled.

Not a lot has happened since my last post, other than getting my head on straight and putting the panic behind me. Saturday was a bad day, and Saturday night/Sunday morning was even worse, which combined with the uncertainty of the preliminary diagnosis made me imagine the worst.

Monday morning, bright & early, we met with Dr. Bleeker. Very nice guy; I think he mentioned he’s 6’8″ (but wasn’t interested in playing basketball in college) and a Dordt College graduate, so was an instant hit with us for the Dutch connection. He remembers going through several undergrad biology classes taught by Yvonne’s dad, and said the tests in his classes were “legendary.”

Anyway, he had a little news for us on Monday; Friday’s MRI and CT scan showed no other areas of suspicion in the head, neck, or lymph nodes, which is a huge good, but did show a spot on one of the kidneys which is likely cancerous. That’s bad, but not hugely bad, because it’s likely totally unrelated to the problem I’m having in my jaw. It will need to be dealt with, but being caught early, it shouldn’t be a problem getting it out, and being caught early, I get to forego the symptoms that would typically alert someone to the problem. Kind of a get out of jail for not-quite free card. So while it’s not good, it’s just a little bad.

Sadly, he still hadn’t received the final report from the histology lab, so he had nothing more he could tell us regarding the path forward. We were really looking forward to that, but the news he did give us was at least a little encouraging. One of his assistants got on the phone with the lab, and they were hoping to get a final word on the biopsy by Tuesday (today), so Dr. Bleeker promised to call me when he got word on it.

Most of today came and went, and the call finally came about 5:40 this afternoon. Still no final word on the biopsy, but part of the reason they are having trouble is that they don’t have a “live” specimen to work with. So he suggested that they do another surgery to extract another tissue sample from my jaw for biopsy. Not exactly what I wanted to hear, especially when things were finally healing up in there and I was hoping to see some of the stitches falling out. But if that’s what needs to be done, I can suck it up and get through it.

He also said that they would like to take a bone marrow sample for testing; non-Hodgkin lymphoma is a cancer of a type of white blood cell, and because white blood cells are generated in the bone marrow, lymphoma cells also like to hide out there, so that’s another place they can often be found. The lymph nodes are the typical place they are found (hence the name) but because my lymph nodes are asymptomatic, it makes sense to look elsewhere for the disease. He said the procedure to extract the bone marrow can be quite painful, so they’ll likely put me out for that.

While I’m out, they’ll probably perform a PET scan on me as well to determine which bits of me are maybe not functioning properly. He explained that the body normally uses a certain amount of sugar in normal functions; the heart uses more because it works more, and they can tell through a PET scan if other organs/bits are consuming more sugars than they ought, which can be a signal that something’s not right. I don’t pretend to understand the process, but that’s the gist of what I heard, so take that for what it’s worth.

So, more testing. One potential problem in all this is timing; we’re due to leave next week for California to attend Ian’s graduation from USMC Boot Camp. I asked Dr. Bleeker if the testing might interfere with that, and he didn’t seem to think so. He thought we could easily get it in this week still. We may be able to get one of the procedures in tomorrow even. Not really looking forward to that, but I am looking forward to getting it done, and sooner is better I guess.

So, we soldier on, trusting that God has it all in his mighty hands. Yvonne posted something about all of this on Facebook tonight, and it was a huge encouragement to see how many people responded that they will be praying for us.

God is good. All the time.