When I first learned that I had cancer on my jaw, the oral surgeon made a point of telling me that what I had was not squamous cell carcinoma, but rather non-Hodgkins lymphoma. At first I didn’t quite get why he was making that distinction, but after thinking about it and doing some research on it, it made sense; squamous cell carcinoma is the cancer usually associated with the use of chewing tobacco. And I suppose, being an oral surgeon, that’s typically the type of cancer he sees when there is a tumor in that area of the mouth.
But I have never used chewing tobacco — I’ve always thought it was a disgusting habit, and was never even tempted to try it. I did try smoking, once upon a time (after “borrowing” a Lucky Strike or three from Dad’s packs) but that was enough to keep me from making a habit of it. I still have trouble grasping why any kind of tobacco use holds any appeal to anyone. Nasty habits.
I also remember wondering early on whether people would assume that the cause of my cancer was chewing tobacco; maybe people have thought that, but I haven’t given it much thought. Then last week a guy I was chatting with asked if I had ever dipped; nope. So I explained the difference between the two types of cancer, and the fact that mine is special (I guess) because it’s pretty random in who it hits and where. Typically lymphoma is found in the lymph nodes (hence the name) and often in the bone marrow, but Dr. Bleeker said this is the first time he’s seen it in the jaw like mine. I hate it when medical professionals say things like that.
When I was doing some Googling about squamous cell carcinoma, one page I bumped into (and bookmarked) that caught my eye was the story of Curtis and his ordeal with squamous cell carcinoma. Most memorable of course are the photos of his surgery; downright gruesome. His cancer was on the inside of his cheek, but also affected his jaw; getting rid of the cancer and reconstructing the area looks like it was a major ordeal. I doubt (and hope & pray) that my reconstruction doesn’t get that involved, but those photos should be shown to any kid even thinking about using chewing tobacco.
I’m sure that some tobacco users will point to a story like mine — that someone who has never smoked or dipped can get cancer — and brag that they’ve been smoking/dipping for decades without consequence… Some people just refuse to learn from others’ mistakes I guess.
Rod Paine is quite a guy. He’s one of the more memorable characters on mye28.com mainly because he still owns and daily-drives the 1983 BMW 528e that he bought in April of 1983.
This month, our 528e turns 30, as it was built October 1982 and I bought it new in April 1983. This BMW is the longest I’ve kept any automobile, having been well known as the “car of the month” guy, many years ago. I tried to get a BMW Original Production Certificate from BMW Mobile Tradition several years ago, but they told me that during the period my 528e was built, they were revising their record keeping processes and as luck would have it, they had no information about my car, as it had been lost. Too bad, as I otherwise have every document associated with this car, since I took delivery of it.
Once in a while when we thought about selling the car, we could never answer the question what will we replace it with? Only once were we going to actually replace it… with a well known Euro M5, but that didn’t happen due financial timing. Bottom line is this has been a remarkable automobile and kept in top condition, it continues to provide very reliable transportation and great driving experiences. If you are new to the BMW E28 automobile, take the time to go over it and bring it up to spec. It will not disappoint you, if you truly come to understand the design philosphy of the various E28 models and can appreciate the driving experience they deliver.
Plus, you are here at MyE28.com, where most all of the resources you may need can be found. Believe me, I know and I am greatful I found this forum some years ago, which has enabled me to keep my E28 in the condition it is in.
-Rod
Rod has maintained his e28 meticulously — his motto is, A car can be restored many times, but is only original once. — and I am grateful to him for applying the same level of attention to documenting what he’s done to his car over his 30 years of ownership; his website is a wealth of information about how these cars are put together and what can be done to keep them looking good and working as they were designed to. Since his car is kept immaculately clean, the detailed photos of the mechanical bits on his site are invaluable in figuring out how things should look, if it weren’t for the grease, grime and rust that are present on most every other car like his. Well, present on mine anyway!
Rod is also an inspiration to me because he maintains his car on his own, and uses his single car garage to work on it.
Reminds me of my garage in regard to size, but mine isn’t nearly as well organized. Some day…
Here are a few photos from his site to show how clean it is; probably cleaner than when he took delivery in 1983. He’s made a few modifications on it over the years… Euro headlights, front strut brace, polished & painted valve cover, etc… But overall just an excellent example of how the car should look. Nice work, Rod! Keep it up!
Update: Rod has sold his 528e. I simply cannot believe it, but it’s true. Clint Summers is the new owner, and from the sounds of it he’ll be an excellent caretaker for the car. Rod’s website has been modified to show that he no longer owns the car, and the site will no longer be updated. Not sure if the website will go with the car or if Rod will continue to maintain it; I just hope it stays online as an ongoing resource for those of us trying to keep these cars running.
Yesterday marked the passing of legend, Ray Manzarek, keyboardist for The Doors. I’ve been listening to some music from The Doors, and am just blown away by Ray’s musicianship, and the way he was able to work so seamlessly with Jim Morrison. Amazing stuff.
I might have to break down and get a DVD or Blu Ray or three of Doors performances. It’s easy to forget how good these guys were, and how bad many current performers are in comparison.
Today is Tuesday, May 21, officially Day 28 of The Cure, and day six following the second chemo infusion. Like the first infusion time, it set me back on my heels a bit, but six days out I’m definitely on the upswing. This time around I’ve had a bit more nausea, and things are still a little off, but not bad. Yesterday was a hungry day; I ate like a horse. Today isn’t quite so much so, but I can tell I’m definitely on the up-swing. Not quite back to where I was pre-treatment, but that will come soon enough.
One thing that’s a little odd today is that I can feel lots of twinges in my jaw; not sure if that’s just the deadened facial nerve messing with me or if it’s the tumor ‘convulsing’ (for lack of a better description…) The twinges seem to extend past the middle of my lower lip though, and feel a bit familiar to previous bouts with weird pains. It also makes me wonder if it’s the cancer reacting to the anti-cancer poisons in my system. If so, let’er rip. Kill that sucker.
Last week’s infusion almost didn’t happen on schedule… My PICC line dressing needs to be changed on a weekly basis, so I usually have that done on Tuesday mornings. Last week when I showed up for the change, the nurse looked at the orders on the computer & thought a blood sample was also needed that day, so took it by way of the PICC line, hoping to save me a poke in the arm the next day. Sidenote: Getting a blood draw from the PICC line is convenient in that I don’t have to get a needle in the arm; the line is already in a blood vessel, so it’s just a matter of drawing some out. But it’s a bit of a nuisance in that they can’t just pull blood directly out without first flushing it with saline (which gives a weird taste/smell along with it) then they have to waste some of the blood that’s drawn out so that it’s not contaminated with saline. Anyway, the sample was supposed to be taken the morning of the infusion, and really shouldn’t have been a big deal, but I got a call from the infusion center later that day telling me the numbers were a bit off.
The blood test that was ordered was for absolute neutrophil count (ANC.) They like to see a number above 1500, but mine was around 1300. In speaking with one of the nurses from Dr. Bleeker’s office, she said that they would likely test again the next morning, and the Doc would make the call whether to postpone or go ahead with the infusion. So the next morning another blood sample taken (this time from a vein instead of from the PICC line, which hurt like crazy, and the bruise is still there!) and the ANC count was in the 1800’s; a much better number! Dr. Bleeker said that sometimes if they have a patient with a low ANC count, he’ll have them take a walk and test again after; maybe the difference had to do with the fact that on Tuesday I drove to my appointment, had the valet park the car, and took the elevator up. On Wednesday, Yvonne drove, we parked in the lot, walked in, and walked up three flights of stairs before the blood draw. I’ll have to remember that next time! Maybe the painful poke had something to do with it too, but I’m not going to attempt a repeat of that.
Just to be on the safe side with the white blood cell counts, Dr. Bleeker had me go back to the Cancer Center on Thursday for a shot of Neulasta (aka Pegfilgrastim), which boosts bone marrow production and release of white blood cells. Since getting the shot in the arm, I’ve experienced the usual side effects; bone and joint pain, muscle pain, and yes, constipation. Wonderful stuff. Oh, and just to make things more interesting, they recommended taking acetaminophen to counter the first three side effects, but of course, that exacerbates that last one. Oh well.
The infusion went much more quickly this time; first go-round they need to be careful with the dosage on the Rituximab, and since they had already figured out how quickly I could take it in, it was done in a couple of hours instead of seven. Speaking of Rituximab, we got an itemized statement from Sanford Health on Saturday, laying out all the drugs and treatments I have received, and the price tags on each. The price on the Rituximab is a staggering $10,528 per dose. That’s like a liter bag of saline with the good stuff mixed into it. Ten-thousand, five-hundred and twenty-eight US dollars per dose, and that’s just the cost of the drug, not the infusion; that’s a separate line item. Must be some really good stuff!
In general, it’s a little humbling seeing the prices attached to a life-saving treatment like this; if life were judged as it is with used cars, I would’ve been long past the point of diminishing return, and you’d find my body among the rusting hulks out at the junkyard getting parts pulled off of it. But I think there’s still some value in this old rust bucket, and it’s worthwhile investing in a cure. At the risk of sounding a little morbid, seeing the dollar figures attached to the treatment makes me all the more eager to make my days count; it adds value to what I have left. Even without the “added value” they become more dear to me because I likely have fewer ahead than behind me (not because of the cancer; I’m just not getting any younger.)
The question I hear most often after the last infusion is still, “How are you feeling?” I really don’t mind the question, because I know that people care, and they know that the treatment can be difficult (it is), but honestly, a good answer to that question usually fails me because how I feel — physically — changes moment by moment, day by day with this treatment. Plus, the further I get into this treatment phase, the less concerned I am about how I feel physically at any given moment, because I know it’s going to change. I may feel rotten right now, but I know that there are better days ahead, and that is what I focus on. There may be worse days as well, but I try not to dwell on that possibility.
That makes me think back to an earlier post; I guess the one thing that I do feel that is somewhat consistent, and that can be more easily related is my feeling of gratitude, or thankfulness; grateful for everything and everyone in my life. I think of the friends who call or stop by or offer a meal, or just post something encouraging on Facebook or elsewhere… I think of my family… My brothers & sisters and my kids, and most importantly Yvonne. I’d be lost in all this without her.
I watched the video below this morning (thanks, Kelli!) that tells a bit of the story of a high school kid dealing with terminal cancer. In the last few minutes of the video his mom talks about the ordeal, and says,
I think that’s one of the blessings of cancer, is that you kinda come out of denial, and so in doing that, things are better. You know, that life is richer. Everything means more, beauty is more beautiful…
That is so true. Every day I am more thankful for the gift of life and health, the gift of friends, and the wonderful blessing that is my family, especially the loving wife that God has given me; I am so undeserving of the affection and love she showers on me. And so undeserving of the love and grace given by God above. Cancer has in a way put many things in my life in sharp relief, helping me better prioritize things according to a better standard. I only hope my distractedness doesn’t get in the way of this becoming a more permanent condition.
I guess I’m also thankful for the clarity that cancer brings; when I watched that video this morning and heard what Zach’s mom had to say about cancer giving a whack upside the head & making those involved appreciate things more, it made me think of the term “Cancer Goggles.” Kind of like “beer goggles”, except without the negative angle! I did a quick Google search to see if I was the first to coin the term, and sure enough someone else did just recently, and even threw a Blogspot blog together. Still, I think the term is very apt, and I think it’ll stick.
Well, that’s probably overstating things a bit; I really just like it a lot and am very content with it. And that’s why I’d kinda like to replace it.
My daily driver is the 1988 BMW 735i 5-speed that I bought for $1,200 and brought home in the fall of 2009. It’s a great car, reliable as the day is long; has only caused me to call for help once in the 2-plus years of ownership. It came with a long list of issues, many of which have been tended to, but many warts still remain. Of course, many of those warts are to be expected on a 25 year old automobile; it’s got cracks in the windscreen, some rust on the bottoms of the doors, a sometimes drippy clutch master cylinder, a slightly ratty driver’s seat and carpet, a far-from-perfect paint job, a sunroof that needs adjusting (and maybe replacing because of some rust), brake calipers that need rebuilding (and brake disks that may need replacing), a driveshaft that has an issue with the center u-joint, and several other little things that need attention. Yes, the cost of repairing the things on that list would be a lot, but the cosmetic things could easily be lived with for a long, long time. The things that I’ve done since bringing the car home have made it a great driver, but part of me yearns for something prettier, without all of the warts.
I only started driving it again this week after it was away for the last month or so, and discovered how much I missed driving it. It all started with this cancer business; pain meds were sometimes necessary early on, which made me a passenger rather than a driver when I was on them. Then Emily’s 318Ti developed a problem with the alternator in early April, so we towed it home and I tore into things to replace it. But in the process of removing the airbox from the car I broke the neck off the radiator. The car had recently topped 200,000 miles, so was due for a cooling system rebuild; I had already purchased all the parts, and was waiting for a prime opportunity to tear into it. Although it wasn’t the perfect opportunity, as much as I hate dealing with coolant, I decided that this was the time to just bite the bullet and do it all. Then with the trip to California for Ian’s graduation from USMC Boot Camp, the car sat in my garage for over a month before it was done. So while her car was down and out, she used my 735i for the four weeks of her internship at the hospital in Huron. When I was able to drive, I spent some time behind the wheel of Ian’s ’92 Mazda Miata, which really didn’t do much to endear it to me. It’s a decently quick and nimble little car, but it’s buzzy little motor, difficult entry &: exit, minuscule cockpit, low windshield… I’ve driven far worse, but I just didn’t enjoy the Miata experience much. I prefer the comfort of my e32 with the gobs of torque and smooth highway performance. I’m a happy guy again!
But… Recently a car came up for sale that’s the better looking twin of my car — a 1988 735i with a 5-speed transmission — and it has… or rather had me considering the possibilities… But alas, it sold last night.
So, unfortunately I need to sell the e32. Lost my job, and its gotta go. Looking to get $3500 out of it. 170k miles, gray on black.
The Good:
• Runs strong, shifts smoothly (just had shift bushings/linkage done)
• Paint is in great condition, though has been repainted by P.O. (8/10)
• Interior is in amazing condition (8/10)
• Front suspension is almost brand new with some spare parts in trunk (all done and from P.O.)
• Haven’t had any issues with any leaks since I had my mechanic do some work on replacing gaskets on both engine and tranny. The car sits for weeks at a time at my dads right now, and no puddles under it at all that I’ve noticed.
• Passes CA smog like a boss
• All the windows work!
• New Fuel pump, and fuel pressure regulator
• Have new fuel filter in trunk, along with new oil filter that I haven’t put in yet (Mahn or Mayle, can’t remember which)
• New O2 Sensor
• Tires are fair
• Brakes in great shape
• No slipping on clutch
The Bad:
• Drivers side air not working. Broken servo brackets according to my mechanic and no power going to heater valves
• Reverse lights stopped working.
• Turn signals are intermittent. I’ve tried switching the relays, however it seems to persist meaning it is likely either a cluster issue, or the relay in the turn signal stalk. Not sure
• Seats are not twisted right now, but do twist if adjusted too much.
• Stereo was stolen out of car since before I got it
• Sunroof needs adjusting. I have a spare motor sitting the in trunk in case it needs it.
• Airbag light is on. P.O. had some hack job done on the airbag, disconnected it, and put tape over the Airbag light. I’ve put a replacement airbag and steering wheel on, and connected everything, but don’t have the tool to reset the light, so the tape remains on it.
That is literally everything I can think of. Overall, it is a solid driver, and I think would be a great car to anyone looking for one who is willing to sort those things out. I have driven it on/off for a while now, and have no hesitation driving it for long periods of time myself.
The biggest appeal with that car was the fact that it’s always been in the south and west — TX, AZ & CA — so the body has none of the rust that mine has. It also has a much nicer color combination; dark silver over a black leather interior; mine is Bronzit-Beige metallic over a parchment interior. Kinda bland, but in a nice way. Kinda. If you like General Motors colors. There were some obstacles in the way of cutting a deal on it though; about 2,000 of them, as in miles. The car was located in Del Mar, near San Diego, CA. A friend in San Diego was willing to go check it out for me, and I was ready to book a flight out there (only $177 one-way on Delta) for a fly-n-drive, but… C’est la vie.
Now I’ll just concentrate on making mine what I’d like it to be, and spend the money I would’ve spent on that car to spruce mine up so it’s what I want it to be. Or maybe just keep it mechanically solid and let it keep the rugged road warrior ugly to scare off the people with newer cars. I would dearly love to find a junked car with a decent black interior to swap in; the beige leather is so sad.
As Day 19 comes to a close, I figure an update is way overdue. The chemicals that were pumped into my system on April 24 made me feel pretty crappy for several days after, but it’s been just like Tim predicted; a few “tough days… followed by better weeks.” Two weeks and four days out, and I’m feeling somewhat normal. I suppose it takes that long for the body to flush all that out — but a few other things have happened that really helped as well:
Got the stitches out of my mouth; the sutures from that first biopsy on March 25 were still in place, as were the ones from the second dig on April 4, and they were all driving me crazy (yeah, I know; short trip.) They are supposed to fall out on their own within a couple of weeks, but after five weeks… Time to intervene. I stopped by Dr. Stanos’ office on April 30 after another appointment in the same building to ask about it, and was able to be seen by Laurie Gromer, the office PA, right away. She was familiar with my case, and happily pulled out all the stitches. Felt so much better…
Finished the last of my Prednisone doses. The Prednisone is prescribed as part of the chemotherapy (it’s the ‘P’ in R-CHOP) and helps the other drugs work more effectively, but one of the side effects is restlessness. I started taking the Prednisone on Day 2, and I didn’t sleep worth a hoot the whole time I was on it. Since my last dose on Sunday I’ve been sleeping better and better each night, and that makes a world of difference. Not to mention the fact that those pills are the nastiest tasting things on the planet… Reminds me of the times I’ve tried to chew regular aspirin tablets. Gah! I did figure out that the best way to deal with the nasty taste is to bury the tablets in a spoonful of yogurt, and just swallow the whole works down. What doesn’t touch the tongue isn’t tasted. (shudder)
The tumor seems to have stopped growing, and my jaw seems to have stabilized a bit. My lower front teeth still interfere a bit with the uppers, but the fit doesn’t change like it did just two weeks ago, and they aren’t nearly as sensitive as they were, which means I can actually chew my food! Seems like a minor thing, but just being able to pop something into my mouth and be able to mash and grind it up with my teeth is huge. The gap on the left side where the teeth were removed is still pretty tender, but is getting better. Because of that, chewing on that side is awkward, but I might eventually get the hang of it, provided it’s nothing too crunchy and doesn’t break into sharp bits. My lower lip is still numb, but I still get occasional “zings” that give me hope that it will come back. I asked the PA about that during my visit to Dr. Stanos’ office, and she said that the tumor may be putting pressure on that nerve as well, and as it shrinks (I hope) that should be better as well. Again, that’s the hope.
Spring has finally arrived in the Dakotas! Seeing some sunshine, even though I’m not supposed to spend much time basking in its glow, helps a lot. We got a couple of really-late-season snowfalls in April, but the snow didn’t linger very long. Now the grass is greening up, the flowers are blooming, the trees are budding, the birds are back… We’ve even seen a couple of pairs of rose-breasted grosbeaks at the feeder in the back yard. Very cool!
Prayer. I’m amazed at the crowd of people who have offered to pray for me over this whole cancer adventure. I’ve always tend to be one who is eager to help others in whatever way I can, praying for them as well, but don’t always feel comfortable asking for help or for prayer. Over the years I’ve learned though that as much as I enjoy helping others, others enjoy helping me as well. Same goes for praying; asking others to help pray my way through this is far more difficult than offering to pray for someone else, but God blesses those we pray for, and blesses us through our time with him, so who am I to deny a blessing to others by not asking them to pray for me or accepting their offers to pray for me? It’s difficult to explain how the praying helps because I don’t know exactly, but what I do know is that the peace I feel through this whole situation can’t be explained in purely naturalistic or psychological terms. Yes, I have some confidence that the oncologist knows what he’s doing, and the cancer center staff know what they are doing, and that the drugs will be effective… But still, through all of this, I haven’t been worried a bit.
The last two weeks haven’t been terribly eventful, but they haven’t been uneventful either. The PICC line is still there, and is still a pain in the neck.
I’m supposed to keep it dry, which means I either take a bath or cover it thoroughly in order to shower. The dressing needs to be changed once a week (thank God for that!) and last week the nurse who changed the dressing gave me a suggestion for covering it that is pure genius; Glad Press’n Seal cling wrap. It’s a fairly stiff material that has a light adhesive on one side. The adhesive sticks lightly to most everything but itself; it sticks tightly to itself. To cover my arm I pull off about 24″ from the roll and wrap it around my bicep, making sure to completely cover the dressing top to bottom, but leaving my elbow free to flex. The length ensures a double layer of protection over the top of my bicep and keeps water from intruding through any gaps. Works perfectly. I’ve also used Press’n Seal for other projects, like painting mirrors on my car; far easier than trying to apply masking tape to an area.
My appetite has pretty much returned to normal also. I never did feel terribly nauseous, but my eating habits changed pretty drastically after chemo. The nurse explaining things told me I would crave a lot of strange things; although I wouldn’t necessarily call them strange, I would call them “high calorie”; lots of sweets and rich foods. I don’t remember exactly everything I ate — I should keep a food diary next go-round — but I don’t remember being hungry either, and I do remember enjoying the things I was eating. Neither have I lost any weight through all of this. I think that’s a good thing.
That second week, I was feeling pretty good, and got a little cocky maybe. I had been really good about avoiding large groups where the risk of catching a cold or flue was greater, but that week, Bryce graduated from tech school, and I went to the ceremony. The next day I was having lots of cold symptoms, and boy was I kicking myself. I stayed home from church for the second Sunday in a row, and skipped BSF the next Monday as well. I miss both of those groups. I took several vitamin supplements trying to get over that quickly, and somehow it worked; by Tuesday I was feeling much, much better. I did go to church this weekend, and am planning on BSF tonight. I managed to skirt past the large crowds at church, and had contact with only a few people; planning to do something similar tonight as well. It’s the last night for BSF, and… I’d hate to miss out on that & miss seeing the guys in my small group.
Last week was a little difficult; my hair started coming out. After getting through the first week without losing any hair I was hoping that I wouldn’t, but then last week I noticed a lot more, um, short & curlies laying loose in my undershorts when they were down, and others would come loose without much provocation. That made me wonder about the hair on my head; looking in the mirror I could see little tufts that weren’t laying down against the head with other adjacent hairs; a light pinch and pull was all it took for them to come out of the head 20-30 at a time. I decided to take charge of the situation; Yvonne buzzed my hair down to a basic training crew cut, then I went after the remainder with a razor. It took a few days to get used to the chrome-dome thing, but after several days and a second shave, it’s feeling pretty natural, albeit a little cold when the weather isn’t warm. Doesn’t take much to need a hat!
Now that it’s after midnight and officially Day 20, that of course means that the second infusion is only 50-some hours away. And that means the feeling of normalcy and health will be going by the wayside once again. I don’t look forward to the treatment or its side effects, but I do look forward to the impact that it will have on the cancer. Kill it. Kill it dead.
Here’s a weather-related phenomenon I had never heard of before today; chandeliering ice.
According to the NatureWorldnNws.com site, chandeliering “happens when warming temperatures cause a once solid mass of ice to splinter into fine, glass-like shards.”
That would be something to see. Too bad the video is a bit grainy, and there’s no close-up of what’s going on there. Very cool!
