January 25, 2016 (Mon) – Groundhog Day, Revisited…

Groundhog DayThose of you that are fans of Groundhog Day, the Bill Murray movie, will get many of the upcoming references. If you are not a fan, or even if you are not familiar with this US-made movie, you’ll probably be scratching your head. But click here if you want a quick synopsis before I totally lose you.

Suffice it say, reliving the same day over and over (in his case for many, many years) is the general theme of the movie. Neverending stairsKinda like the instructions on a shampoo bottle: “lather-rinse-repeat.” Never-ending. This has also been the general theme of my life of late, although in my case for only 6-8 weeks or so. One of the differences is that Phil Conners starts off as an assh…er, jerk, and slowly comes around. Hopefully I Circle loopdidn’t begin that way. Plus, I won’t be buying any whole life insurance policies from Ned Ryerson, or anyone else for that matter. Somehow I don’t think I would qualify at this stage. And no, I am not an expert ice sculpturer, speak French, nor play jazz on the piano. But I do wield a mean remote control that I am gaining additional expertise on every day.

Leather ReclinerNow my recliner definitely has permanent butt cheek marks embedded in the soft leather. This is a result of spending about 95% of my waking hours, day in and day out plopped accordingly. Each day I wake up to the hope that things will have changed and that I will feel incrementally better to where I can begin to get out and around a bit more. And C squaredthen I get up out of the recliner to head back to the bathroom and run out of breath. Unfortunately that is about the extent of my energy level which is being affected by the big C, or the big C plus the other C (chemo). Some days it feels like they are ganging up as C-squared. Hopefully one of these days the 6am “I Got You Babe” alarm will change to “Happy” and things will fall into place as they should.

I have been able to get out on a not-so-regular basis to walk laps around my cul-de-sac. I don’t do so well with hills soWalk cul-de-sac I am sticking to flat terrain. Talk about Groundhog Day, going around the same block lap after lap. However, don’t let it be said that I allow myself to get locked into such a tight regimen. Occasionally, now don’t faint, I shake things up by, ready for this? – turning around and walking in the opposite direction. I know, I’m just a risk taker. Here was my pattern after one day when I really pushed myself for over a mile. Click on the picture for the incredible full effect.

One of the regular daily occurrences is that my buddy Mr. Nausea, seems to want to be my best friend and hang out in the Lurking in the shadowsshadows everywhere I go in the house. Kind of like our dog Bill who follows my wife everywhere. Just when I think I’ve lost him, he taps me on the shoulder and says, “eh, not so fast buddy.” Funny how (OK, maybe not funny) the day of and the day after my chemo treatment seem to be the best days. Mr. N doesn’t seem to join the party until a few days after, and then like any unwelcome guest, never seems to know when to leave the party. I can deal with him but it’s the lack of appetite that seems to follow him around that is more of a challenge. I’m still struggling to at least hold my weight steady, even at 30 lbs less than normal. But forcing myself to eat seems to bring Mr. N out of the shadows and in my face. It’s a delicate balancing act.

DraculaA week ago when I had my regular blood work done just prior to my chemo, the onc-doc was going over the results. He asked me if I had been bleeding a lot somehow. Despite being on Lovenox and susceptible to bleeding, my answer was a negatory. Apparently I was a quart low Blood drawand anemic. I’m guessing Dracula was sneaking into my bedroom in the middle of the night for a little snackie-poo. So, they arranged for me to come back the next day (now two days in a row) for a blood transfusion. Never had one of them puppies. They had to cross match my blood to be sure I wouldn’t reject what they were going to give me. BC (before cancer), I used to donate blood regularly and I was up to about 8 gallons total. I guess it was about time to get some of that paid back. Unfortunately they must have had a donor with regular headaches because that has been added to my daily regimen ever since.

On the good news/bad news and good news but bad news front, I contacted Massachusetts General Hospital in Boston regarding the EGF816 clinical trial they have going on. Initially with my history they feel I might qualify for the trial and have invited me back for a consultation Boston snowwith the onc-doc running the program. This was the same doc I was trying to get my insurance to cover to visit for a second opinion, which they denied. So now, because of the trial, I get my free consult whether or not I end up in the trial. So that is pretty darn good news. The bad Boston flynews is that it is in Boston. In the winter. The other bad news is that I am not quite travel capable right now with my energy level but I am hopeful I’ll be able to at least build up enough energy for the trip and try and time it so they are not getting 2 feet of snow. Possible good news is that I might qualify for the trial. The bad news? You guessed it. It’s in Boston. And if I qualify, it will mean many trips out there for the duration of the trial. Guess I got spoiled with my last clinical trial being only 20 minutes driving distance away. I wonder if the airlines offer discounts for bulk purchases?

GlowbodyNow halfway through my 6-cycle (once every three weeks) chemo treatment regimen. And I have my glow-in-the-dark PET scan scheduled for Feb 5th, the day before my birthday. We’ll see what that shows. And the week following that will be my 3rd Cancerversary Celebration. Lots happening. Oh, and probably with my next blog, I’ll be posting a link for those of you that want to support Team Craig – Get Fuzzy again this year at the Breath of Hope Walk, either by walking and/or donating to support The Moores Cancer Center. Stay tuned.

Definitely business as usual for now and assuredly day at at time.

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December 20, 2015 (Sun) – Yippie Ki Yay – What a Ride

Throwing riderThose that know me really well would certainly not classify me as a huge fan of country western. Sorry Courtney. But just not diggin’ the twangy parts. The rest, not so bad.

But as I was trying to come up with a theme for my very overdue blog post, I could not get the image of a rodeo cowboy riding a bronco, especially to describe the last 6-8 weeks or so.

Unfortunately this wild ride has been anything but fun. And you’ll understand reading below why this blog post will be more of just a short health update than any deep philosophical blog endeavor like most of my posts. Yeah, right.

LCAM all whiteBack in early November, yes, that’s how long it’s been since my last personal post, we were in the middle of Lung Cancer Awareness Month. Unbeknownst to me, my wonderful Rotary club conspired to have as many of our members as possible show up for our luncheon all wearing white in honor of the occasion. Here’s an awesome shot of that day. What an amazing group of people.

Back on November 11, I began a 15-day course of radiation to my pancreas. While I had little difficulty handling previous radiation treatments (brain, lung, hip, sacrum etc.), they warned me that this would be different. Boy, they were not kidding. It started ominously as I had to switch to another hospital for the treatment because my regular radiology center could not get me in for two weeks due to “staffing issues.” And three days into treatment Radiation symbolat the other location, I showed up one morning early and waited and waited. Eventually they came out and told me there was a technical issue and they were not sure when the machine would be back up. The technician even went as far as to tell me she wasn’t sure if the problem was a technical problem or just “operator error.” OK, that just instilled an overdose of confidence in the process. I came back later in the day once they got it figured out. Of course deja vu struck the very next day with the exact same scenario. Finally, because of the Thanksgiving holiday, one of my treatments was on a Saturday to make up time and the unfamiliar technician was working solo because of limited staff. No big deal until after the procedure when she asked me if the machine had sounded “normal.” Apparently she wasn’t as familiar with the machine being used and couldn’t remember what it was supposed to sound like. Wow.

Joachim Alcine, of Canada, lies on the canvas after a sixth round knockout by Daniel Santos, of Puerto Rico, during their WBA light middleweight title fight Friday, July 11, 2008, in Montreal. (AP Photo/The Canadian Press, Ryan Remiorz)

Finally I finished my 15 day course and what can I say? It. Knocked. Me. On. My. Butt. I was warned about the side effects, especially nausea and loss of appetite but little did I know what was in store.

My last radiation treatment was on December 2nd and I began my first cycle of chemotherapy a week later on the 8th. Because the after effects of radiation can hang around for several weeks, it was difficult to separate out what symptoms were being caused by what.

ERSo in the last few weeks I’ve been to the ER twice and the main hospital twice. The hospital visits were planned with the lung biopsy one day and a chemo port installation just this past Friday. The ER visits were not on the agenda as you might imagine. The first was near my final radiation treatment when I was experiencing increased shortness of breath. Although I am on Lovenox blood thinner, there was a minor chance I might have developed another pulmonary embolism. However, all tests came back OK and it was just chalked up to everything that my body was being put through. The other ER visit was due to some major plumbing issues. Eventually it all worked out. And for your benefit and mine, that is all I’m going to say about that.

No foodAs for the challenges, I not only didn’t have much of an appetite, I had an anti-appetite where even the thought or sight of food started to make me nauseous. Hmm. Maybe I’m pregnant. There was a span of almost a week where I ate virtually nothing other than a fruit smoothie my wife made up. We even doctored it up with some appetite enhancing ingredients that I may have have partaken of 45 years ago in college. Had some limited success. But overall I’ve lost 30+ pounds in the past 8 weeks. Good thing I saved my “skinny” clothes. My wife is a wee bit jealous.

But now two days after my port placement, I have turned a tiny corner not having barfed for three days. And for the past two, I have actually eaten solid food with my goal of increasing my intake just a little more each day. So far so good. However, I am still extremely weak with most of the day spent on my recliner. I even had to borrow a walker for the hospital visit Friday which entailed about a 150 foot walk. Yesterday I walked to the end of our driveway and back twice. Small steps. Tomorrow it will be an entire loop of our cul-de-sac. At least that is the goal. Small steps turning into bigger ones.

So, right now I am much better than I was just less than a week ago. My next cycle of chemo is on Monday the 28th. At least now I have a port they can use instead of using my arms as dart boards to find a vein. The intent is for the chemo to hold things at least in check until the results of the biopsy come back that might point to some other treatment options whether it be a certain drug combo or another clinical trial.

This will most likely be my last post until after the new year. I hope everyone has a safe and happy holiday season. Here’s to next year.

Business as usual. Well, maybe not at the moment. But definitely – day at a time.

Profiles in Lung Cancer – Day 12: Karen Loss – “I am living with lung cancer, not dying from it.”

As you all know, November is Lung Cancer Awareness Month. A bunch of us bloggers have gotten together and are profiling a cancer survivor, caregiver, advocate, or health care professional each day this month.

Karen Loss - HeadshotToday it is my distinct pleasure to introduce you to Karen Loss, a lung cancer patient and advocate who was diagnosed in late November of 2012 with stage 4 carcinoma NSCLC. Here is her story in her own words.

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What is your connection to lung cancer?
I will celebrate my 3rd anniversary since my lung cancer diagnosis on Thanksgiving this year.  When I was originally diagnosed, I was already a nearly 16-year survivor of concurrent primary cancers of the uterus and ovaries.  In January, I will celebrate my 19th anniversary after those diagnoses.  I am currently undergoing my 3rd treatment regimen.  First, I had a combination chemotherapy comprised of Taxol, Carboplatin and Avastin.  That was followed for about 6 months by Avastin maintenance therapy. When progression began again, I was put on my second tier treatment of Taxotere.  After that shrunk my tumors once more, I went off all cancer treatments and stayed off for about 15 months, though I still received CT scans every three months.  The last three scans showed ongoing slow growth in both tumors, but especially in the one on my hepatic dome.  The trend was undeniable, so my medical team and I felt it was time to resume treatment and with a few different potential alternatives to consider, I chose to try Opdivo/Nivolumab.  I have now had four infusions of this drug and have not yet had my first CT scan since beginning this new therapy.  That will happen in the week following Thanksgiving, and I am already looking forward to seeing what it will tell me.  During these past three years, I have never reached NED status, but the treatments I have been given have shrunk my tumors, keeping things well in hand so far.

Describe a typical day
I work full-time at The MITRE Corporation, a large research and development company in the Global Security Services division. In addition to that, I research Karen Loss Channel 8 newsand review new articles, videos and blog postings coming out each day about lung cancer in order to provide daily updates to my Trekking Through Cancerland Facebook page. I also tweet or re-tweet (Twitter handle: @CancerTrek) information about lung cancer on most days as another way to continue efforts at providing increased education and awareness.

Tell us something we’d be surprised to know about you
I published a book of letters about the first nine months of my lung cancer journey as a way to try and provide a personal perspective and hopefully inspiration to those who choose to read it. So far I have distributed approximately 2,300 copies through Amazon.com and its affiliates. Unrelated to lung cancer, I have been sponsoring children in foreign lands through Compassion International for nearly 16 years and have traveled to meet them and learn about their lives, the things they are receiving through the Compassion program, the culture of their countries (Haiti, Colombia and Ethiopia) and simply to love on my kids.

Karen Loss - w TJWhat do want us to know about lung cancer?
I want people to know that everyone with lungs (thus EVERYONE) is vulnerable to lung cancer, but that no matter what may have caused the disease, every person deserves care and compassion. Plus…the great strides in lung cancer research are providing greater hope for patients with each passing day.

What brings you hope?

Seeing stage 4 lung cancer patients on TV commercials and interviews, in documentaries, in magazine articles and blog postings, at conferences, really anywhere they have the opportunity to share with others that they are living their lives. My motto is that I am living with lung cancer, not dying from it. One day, hopefully in the foreseeable future, may we be able to consider this a chronic disease rather than a terminal one…

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Thank you Karen!

Read yesterday’s profile by blogger Samantha Mixon of Kelly Shannon here. Tomorrow’s profile of Diane Legg by Linnea Olson will be available here.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Business as usual. Day at a time.

November 3, 2015 (Tue) – Time to Get Naked

OK, I know I have your attention right now. Either one of curiosity to see where I take this or one of revulsion wondering what personal picture I might post. Well, getting naked may mean lots of things. But we will address (or undress) these a bit later in the post. That, of course, is assuming the internet and WordPress police did not nix my post because of the title.

LCAMBut first things first. November is Lung Cancer Awareness Month. Oh no, not another cancer awareness month! Well, actually November should be the biggest month because, unbeknownst to most of the public, lung cancer kills more people each year than the other top three cancers (including breast) combined. And each cancer has its own color used in support. White is often used for lung cancer. So anytime you see something white this month, think of the survivors like myself that are battling to stay ahead of that curve. I’m not much of a political activist and luckily we have several other members of our “club” that do a wonderful job at bringing awareness to much larger groups. But please keep this in mind over the course of the month. You only have to have lungs to get lung cancer.

As I mentioned in my last post, we were getting ready to head out for a vacation extraordinaire to Carmel and Pebble Beach about 8 h20151023_094748ours up the coast of California. Extraordinaire does not come close to describing this trip. If I had a bucket list, which I don’t, this would definitely have been on it. Courtesy of my very generous brother and his wife, we stayed in the most amazing place(s) imaginable. Here’s a picture looking up from the backyard from our first stay-over of 5 nights. And a link if you want some more detailed pics and info about this place. Yowza Yowza. Click on it for the full effect.

Oh, bPebble Beachut the trip was not over. Six of us (the “golfers”) moved down to Casa Palmero for the last two nights which made us eligible to play at
Spyglass and Pebble Beach, some of the most awesome courses in the world. Now, I won’t reveal my golf scores because they approximate the thermometer reading in Palm Springs in late summer. But the score did not matter. The courses were what matJacuzzitered. And being with family. Just amazing. As for the accommodations, they were just absolutely top notch. We had a continental breakfast each morning delivered and set up as evidenced here. And we even had our own private backyard (with 9′ wall) with Jacuzzi. Perhaps that Pebble Beachis where on20151027_083434e of the references from this blog title comes in. I’m not telling. Suffice it to say, it was a trip of a lifetime.

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Now, on to more serious biz-wax.

This past Friday I had my double-your-pleasure combo of a brain MRI scan and PET scan. Got the results late in the day. The good news is that my brain MRI seems to indicate a fairly stable situation. Ta da. And the tumors in/around my lung continued to progress at a slow rate. So, that’s sorta OK news. But this is shoe-droppingwhere the other shoe dropped. And dropped like a size 20. The lesion (tumor) on my pancreas skyrocketed to over 7cm. That’s centimeters, not millimeters. The official write-up has it as “dramatic increase in size and metabolic activity of 7 cm pancreatic/peripancreatic mass.” No cancer patient likes to read the words dramatic increase. That equates to about 2.75″ for those of us not on the metric system – not quite the diameter of a baseball but coming close. Plus there is another “new nodal metastases lateral to the left psoas muscle in the upper pelvis, measuring 4-5 cm.” That came out of nowhere since it hadn’t shown up before. Needless to say this report was a bit of a sucker punch in the gut. And it explains the increasing pain I’ve been seeing in my upper gut that is currently only held at bay with increasing doses of Vicodin.

Knowing thospital_gownhat we would have the results in time, I had scheduled a meeting with the lung-onc specialist at Moores yesterday so that we could go over the results and chat about options. Bottom line: I will be leaving the AZD9291 trial shortly. First, they are scheduling a new biopsy to do all of the genetic testing for markers and “expressions.” And immediately followed by, yes, more radiation treatment, this time to my pancreas and left psoas muscle. The day before radiation treatment begins, I will chug my last A-team pill. So “going naked” means, for one, going without any oral cancer medication for the duration of the radiation. It also refers to my
state of dress, or undress, during said radiation treatments. As I’ve indicated before, I lost my modesty long ago.

As for what follows the radiation treatment, that is up in the air a little since there really are several options. There is another clinical trial (EGF816) going on in Boston and NY which we are seeing if I qualify for. There is also a combination of Opdivo (nivolumab) and Tarceva (erlotinib) which may work, but the chances of expressing the PD-1 marker is fairly low in a non-smoker and Opdivo works much better in smokers/former smokers. And choosing one of the drug options will eliminate my possible entry into one or more clinical trials. It gets pretty complicated trying to lay all of this out. Although I am in search of a second opinion, right now I still have confidence in my doc. As she indicated, my first two courses of treatment (Tarceva and AZD9291) were slam dunks as the right option at the time. We are now in somewhat of uncharted territory and there is no absolute right answer. My onc still is leaning towards starting off with chemo (carboplaxin and pemetrexed) which is given once every three weeks in a 2-hour infusion. If that fails to help, we can always come off that and try one of the other options. But things may change over the next 10 days – stay tuned.

So I’ve been on two trips recently. One from a bucket list and the other just about the opposite. Perhaps it rhymes with bucket? 🙂

But I sCraig and Kim at Rotary11032015till have options and new drugs are coming out fast and furiously. Just doing my best to stay ahead of that tsunami.

And, as always, my wife has been right by my side the whole way. I just have to end on this picture.

Business as usual. Day at a time.

September 19, 2015 (Sat) – The Drought is Over

DroughtIf you are living in Southern California as I am, you are probably saying to yourself, he’s full of cr*p. Well, apparently I am. But we will get to that in a minute. No, the recent downpour we received helped, but in no way way made much of a dent, in our water shortage. However, the ending of the drought I am referring to is a different breed and falls in line with other negative but positive sounding things we cancer patients can’t get used to like “progression” and “enhanced.” Or if you’re a guy, a word like “enlarged.”

Beep, beep, back up the truck.

Last you heard from me, I left you hanging with all of my scan tests the day following my last blog posting. Well, as luck(?) would have it, I dont-leave-me-hangingwas able to get my brain MRI done but as I was getting ready to head out for my PET scan, I received a call. The PET machine was down and they would have to reschedule. And this after I sacrificed all day the day before in not eating any carbs. And that is a big sacrifice for moi. Unfortunately I was leaving for the Bay area for a week the next day and had to reschedule the scan for this past Tuesday after I returned. Carb-free again all day Monday and no eating at all Tuesday until my scan at 1pm.

stability-in-lifeFirst the (mostly) good news. The brain MRI that I had back on the 4th showed that “the 8-9 mm ring-enhancing metastases in the superior cerebellar vermis is stable.” Yea! We cancer-types love the word “stable.” But of course it was tempered later in the write-up by something new: “a questionable focus of enhancement involving the subcortical anterior right temporal lobe.” Couldn’t leave well enough alone, could they? So this will be something they watch for on my next scan in October. Small stuff.

Green checkAs for the radioactive sugar-juice PET scan, my shoulder showed no seismic, er, metabolic activity indicating that my frozen shoulder is just that – a frozen shoulder. No fuzzy hiding in the tundra. So maybe with enough rehab, I can return to the softball diamond. Sorry guys, you may get me back after all one of these days.

As for the remainder of the PET results, this is where the drought ends and me being full of cr*p begins. This itsy bitsy spider got thoroughly soaked by an Full of crapearly El Nino. In addition to the eight known problem areas in and around my lungs, four newbies popped up. My pancreas, my left hip wing, my pelvis area and my right upper thigh/femur area all lit up like those Christmas LED’s I was hoping to avoid. Overall the term “intense metabolic activity” was used no less than 6 times in the write-up covering about 12 total identified locations. Although this may not be PC, I’m beginning to feel a bit like General Custer. Yet, I still have a lot more weapons in my arsenal than he did.Body spots

As it stands now, I have yet to discuss these results with my lung-onc specialist at Moores Cancer Center as she was out of town at the end of this week. I’ve been putting together a list of treatment options and other drugs/drug trials to quiz her about that might come into play. Yet from prior conversations with her, I suspect she will recommend chemotherapy. However, I may have some directed radiation treatments in my hip and upper thigh areas first. The latter area has been bothering me for a few weeks, but true to form, I thought it was from an injury from trying to leg out an infield grounder. Nyet. So I am hoping a quick zapping of that area will address that one spot as it did when I last had hip radiation. But this is all supposition at this point because I need to have that conversation first.

To add insult to injury, I picked up a nasty cold while traveling and this past week has been a challenge feeling crappy and at the same time finding out that I am full of it. Had to forego my long anticipated and planned volunteer stint this weekend at Camp Ronald McDonald for Good Times as I knew I should not be around kids with compromised immune systems while I had a bad cold. One of these days I will make it back there.

I also, over the past several weeks, had noticed what appeared to be an edge of a tooth poking out through my gum sideways near where my wisdom tooth would have been if I had any, which I don’t. When I mentioned this to my lung-onc-doc, she became very concerned since being on Zometa increases the chance of developing osteonecrosis of the jaw (ONJ). Although I went off Zometa a few months back, apparently the half life of that drug in your jaw means that there will be residue for a long time. As for what ONJ is, you really don’t want to know. And you really do not want to Google-image it since you will ruin whatever meal is next on your agenda. And there is no cure. Lovely. Keeping my fingers crossed that there is no correlation to my alien tooth and this nasty affliction.

I saw an ortho surgeon who removed the edge of the exposed tooth so it won’t bug me any longer and I will be seeing him in a couple weeks to keep a close eye on it to be sure no infection sets in.

Netx PhaseSo we now enter a new phase in my journey, whatever it is. This is certainly the biggest challenge I have faced in the last 2 1/2 years of treatment. But even if I jump into chemo, the hoped-for result would be that it keeps the fuzzies at bay long enough until there is another new drug or treatment available to switch to. Just staying ahead of the tsunami is what I aim for.

On another note, assuming whatever treatment options are put into place allow it, I will traveling to Chicago in two weeks for training as a LVNG With Ambassador. I know a couple of my brethren that are in their own journeys will be in attendance as well. Essentially we will be offered training on how best to tell our stories and then participate in regional programs as a speaker. Should be very interesting.

So, I wish I had better news overall but this is yet again just another speed bump in my very zig-zag journey. A big speed bump, yes. But just an obstacleFrankenstein none-the-less.

But do me a favor. If you are non-local follower of my blog, please stand up. Now put your arms out like the old stereotyped picture of Frankenstein’s monster. Now wrap them around me for a virtual hug. For those that see me in person, I expect a real one. 🙂

Business as usual. Day at a time.

July 27, 2015 (Mon) – A Triple Decker of Tasty and Not-So-Tasty Morsels

Triple Decker SandwichMy wife knows I love club sandwiches. She will invariably guess correctly when we go out to eat at a casual restaurant if a club sandwich is on the menu. What can I say? I like predictability and knowledge that I will enjoy all ingredients included in said sandwich. Call it comfort food. Or call it a boring husband.

Yet, my journey to date has been anything but predicable. Hopeful yes. Predictable? Not usually.

Thus begins my quickie (don’t go there) summary of my most recent triple decker sandwich, aka my set of 3 scans last Friday. Unfortunately not all ingredients were mouth watering. Smacking my lips and gagging at the same time – now that’s a lunch entree that would result in a nasty Yelp review.

BaconLet’s start with the bacon: My brain MRI came back, once you got through all of the medical gobbledygook, as “No significant change right cerebellar metastatic focus when compared with most recent exam...” Obviously not written with proper grammar in mind but I will forgive the transgression this time. Bottom line: upstairs fuzzy is hibernating, hopefully like Rip Van Winkle. Yea!

Triple mixtureNow mix some castor oil with pureed Brussels sprouts. I had no idea there was an “s” on the end of Brussel, did you? Squirrel!  In any case, make a nice paste with those two ingredients, perhaps add some Vegemite for texture and spread on your sandwich. That would be my kitty-cat (CT) scan of everything else. Again, skipping over the impossible-to-decipher technical jargon, here is what you get: “Progressive malignancy in the lungs and mediastinum. Suspect enlarging renal metastasis.” That’s where the gagging kicked in. But I was mentally prepared based on recent history and had my virtual barf bag handy. So no cookies were actually lost in the process. Bottom line: same ‘ol, same ‘ol story when compared to the scan results for the last 3-4 scans. Continued growth in the fuzzy boys below my noggin.

Triple mixture 2Finally, layer some Limburger cheese with anchovies and sprinkle some ground up ghost peppers (those that know, know) for good measure and you have completed my meal. Some of you might actually like this. Yeech. This last set of ingredients comprised my third scan – my shoulder MRI which, when chewed up and digested down to words I could understand, came out like this: “Magnetic resonance imaging of right shoulder demonstrates features (‘features?’ Really?) of an active inflammatory phase of adhesive capsulitis. Nonspecific focus of signal hyperintensity and replacement of fatty marrow within the coracoid process Frozen Shoulderpossibly reflecting a metastatic focus given the patient’s history of lung cancer. This focus may be mildly sclerotic on CT. Stress remodeling of the coracoid process is thought to be less likely.” Bottom line: Looks like I have a case of “frozen shoulder” which will probably be treated by an ultrasound guided injection of steroids directly into the achy area. Then most likely continued home PT rehab. Problem being that this may not be allowed under my current AZD9291 (A-team) trial. We shall see.
Ashes

And if you nuke this sandwich to just charred remains, as I would suggest you do in any case, you may get what is alluded to in the last paragraph as “reflecting a metastatic focus…” So there is a possibility that not only do I have a frozen shoulder, but a fuzzy with a parka is hanging out in the tundra. The plan is to keep an eye on it and perhaps do another MRI on my shoulder after having received the steroid stab. Maybe it’s just an empty igloo. Stay tuned.

Had my regular lung-onc visit today but was seen by a sub since my regular onc was out of town. So, although he was not in a position to prescribe any specific course of action, he was pretty certain that we will be staying on the same route for at least another 6 weeks. He was especially happy that all of the parts he checked out seemed to be in fine operating condition. Obviously he did not check out all of my parts…

Business as usual. Day at a time.

July 18, 2015 (Sat) – Why Me? If Only. And Other Time Wasters

why-meEarly in a cancer patient’s diagnosis, the “why me” pops its ugly head. I say ugly because no good comes from asking that question. Some of us quickly get past that futile endeavor while others have a tough time shaking it off. Certainly lung cancer can have some obvious direct causation connections: smoking, long term asbestos exposure, even living in an area with high levels of naturally occurring radon gas. Yet many of us without any obvious causes have to accept the fact that life can be random. Roll of the dice. Luck of the draw. Turn of the wheel. Mutant gene. Who knows? And more importantly, should I care? No. It is what it is and stressing over what might have caused it just takes energy you need to weather the storm.

if-onlyIf only is not any better.

If only I had built a better wall with my cereal boxes when I was a kid sitting at the breakfast table with my smoking parents. I would surround my bowl and duck Cerealsmy head into the enclosure with boxes of Sugar Pops, Sugar Frosted Flakes and Sugar Jets forming a barrier. Now that I think about it, it’s more surprising that I don’t have diabetes with that diet. Yes, those were the actual names of the cereals back then when they weren’t so PC health conscious. I can almost guarantee they have just as much sugar these days but that is a bad word now. But perhaps second-hand smoke from 50 years ago was the culprit.

JointIf only I hadn’t partaken in college. Could that have caused the bad boy fuzzy that sat around for 40+ years and just now decided to rear its ugly head? Would have enjoyed eating the brownie version more anyway.

popcorn scraping 2If only I hadn’t scraped the asbestos-laden popcorn off all of our ceilings in our house. Although I wore a good respirator, maybe something slipped past. Could one of those minuscule fibers that I possibly inhaled been the snowball that got the avalanche started many years later?

But once again, do any of these “if only’s” have any proactive benefit in the healing process? Of course not. So why waste what valuable time I have in doing something so detrimental? Not gonna.

What ifNow “what if,” “if only’s” cousin, can play both sides of the fence. If used looking backwards, it takes the same shape as “if only” since wondering what might have been is wasted breath. And trust me, wasting breath is the last thing you want to do as a lung cancer survivor. But if you use “what if” looking forward, it can have a positive benefit, as long as what follows that phrase are actual steps taken. What if I am able to get into that clinical trial? What if I spend more time Googling new treatment options and bring them to my oncologist? What if I connect with other NSCLC survivors to compare notes and exchange info? What if I win the lottery? OK, maybe that last one is a bit out of my control but hey, hope is a good thing too. And I have to pay for our bathroom remodel somehow.

Bathroom2How’s that for a segue? Yes, we are biting the bullet once again and are currently remodeling our master bathroom. Only a Bathroom1couple months after redoing our guest bath. And only two years after our total kitchen transformation. I figure if I let my wife keep changing things in the house, she might lay off changing her husband. Or changing him out. So far so good. We were what-iffing whether we should do this remodel, just as we asked that same question two years ago before doing the kitchen. But now, like then, we are looking toward the future and I plan on getting many years of magazine reading time on the new throne. OK, these days it would be iPad reading time, but I think you get the picture, even though you may not want to.


rotary_logoI’m going to cheat and use a “what if” in the past. What if I hadn’t joined Rotary almost 10 years ago? That is not something I want to think about as it was one of the more important, and rewarding, decisions in my life.

Recently I was asked by our incoming Rotary President (Peter) to provide the beginning-of-the-meeting 2-minute inspirational message. It was truly an honor to be asked, especially for Peter’s inaugural meeting. Our club always has the Mayor of San Diego do the swearing-in ceremony so I was sitting next to him at the front table. So how about the Chargers, Mr. Mayor? Nah, we only chit chatted about Rotary Spiel July 2015nothing in particular. But as for my message, the last time I gave one at this club was just after being diagnosed a little over two years ago. It was my coming-out party, so to speak, although I had already started up my blog.

So this time around it was a similar message. If interested in reading the text, you can click on the graphic.

But the major surprise at Rotary was something I never saw coming. My wife had told me she wanted to come to the luncheon and I had assumed it was to hear me give the inspirational message. Yeah, right. Little did I know the true reason.

Here’s the background: many of you know that I have volunteered as a Rotarian “reader” to one of our elementary schools we have partnered with. However, instead of reading, I found I was much better able to keep the 1st grader’s attention by doing simple science experiments. If the students were any older the science would have gotten over my head. There is another Rotarian, Doug, that has been teaching science as a volunteer for many years at another school. So, that sets the stage. Speaking of stage, Doug was sitting next to me at the head table but he did not have a clue as to why. They just asked him to.

The incoming President always has their own agenda for the year and typically has one or two new programs they are introducing. So as Peter was introducing his plan, he mentioned a new science scholarship that they were creating and began discussing what it would be named and in whose honor. So I thought thought “Cool, that’s why Doug is up here. They are going to honor him by naming the scholarship after him. Awesome.” Yet when I turned to see the PowerPoint slide behind me, I saw both my picture and Doug’s. Turned out the scholarship was in honor of both of us, and in a nod to Bill and Ted’s Excellent Adventure movie, it was named “Craig and Doug’s Excellent Science (CADES) Scholarship.” It was jump started by a very generous $30K donation by another Rotarian and is intended to be perpetual. I was absolutely humbled and I must say, wiped a drought-breaking drop or two off my face. Very cool. The scholarship(s) will be given to students that are entering the science field in college.


3-ferOn the medical front, next Friday I will be enjoying a 3-way. OK, get your minds out of the gutter. I’m talking scans here. Of course there will be the usual CT scan of my chest area and the MRI of my brain to check on fuzzies in those locales. But since I have had an ongoing shoulder issue that has prevented me from playing softball, I asked if they could “throJuly scan calendarw in” a third MRI of my shoulder to at least determine what is going on there. I have done PT, and then I’ve rested it for months, to no avail. So we shall see what my options are. I may have the results of the scans by the end of the day on Friday. Stay tuned. And yesterday was my one-year anniversary from entering the A-Team (AZD9291) clinical trial. Yes, I’ve been popping that magic pill for 12 months and I will continue to see how long I can milk this puppy. Although I cannot imagine anyone wanting to milk a puppy…

Business as usual. Day at a time.