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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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.

June 19, 2015 (Fri) – Into Each Life Some Rain Must Fall

If you haven’t read my prior blog, this won’t make much sense.

I’ve heard this saying before but never really knew where it came from. It actually originated with Henry Wadsworth Longfellow in his poem “The Rainy Day.” But that is kind of a dark and dreary poem, and thus not appropriate, so I will only steal the one sentence.

Soggy spiderAbout that California drought I was hoping would continue? Well, this spider got a little dose of El Nino this past week. Down the spout I washed. Not all the way to the drain but enough to put a damper (oops) on my climbing ability. Essentially, and honestly no surprise to moi, my scans showed continued growth in the various areas (9 locations to be exact) previously showing progression, typically in the neighborhood of 3-4 mm increases. However, my onc-doc was more positive in indicating this growth is still pretty small.

I have been working on budgets at work for the past couple of months and even a few percentage points change couldPercentage be huge. So when I look at the growth in my cancer, I calculate a 30-40% increase in size and that seems gargantuan. However, when you really crunch the numbers, it only equates to 1/10 of an inch or so, thus pretty minimal in the scheme of things. But it’s the trend that is of concern. Each of the last three scans essentially showed this similar pattern. Here’s a cut and paste from the official write-up: “appearance of slight-mild interval worsening of pulmonary metastases and mediastinal metastases.” Whatever happened to the terms stable or resolving? I know, I know. That’s life on the spout.

The upstairs brain fuzzy showed “interval slight increase in size of right cerebellar enhancing lesion now measuring up to 11.1 mm.” Thus, it appears that, as Dr. Frankenstein said, “It’s alive!” Still some question because they apparently used the higher res, or stronger magnet, scan that could account for some of the measurement differential. Rumor has it (since I’m still waiting to hear from my radio-doc) that we will wait until the next scan in six weeks where they will be sure to use the same scan settings. That way we can actually compare fuzzies to fuzzies (ie. apples to apples) to make a better judgement on what might or might not be changing. So, it looks like it will be business as usual until the end of July or so.Singing in the rain

But you know what? Right now I’m spider-dancing in the rain because I am still doing really well. I have no difficulties doing day to day stuff including my volunteer gigs, working 40 hours per week (quit laughing Kim) and golf. I’m not playing softball because of my current shoulder issues but that is unrelated (I hope).

In terms of what is on the horizon, my lung-onc-doc says there really isn’t another magical pill for me in the near future. Apparently the new whiz-bang immunotherapy treatments are not quite there in terms of matching up with my particular situation. If any of my lung cancer peeps out there have more current info, please let me know. As it stands now my next option would be chemo-therapy. And that has me concerned. I know some of you with chemo experience would say, yup, not something easy to deal with, while others would say, eh, it’s no big deal. Everyone reacts differently and it all depends what cocktail you get. I prefer margaritas myself.

Prayer BlanketRecently a friend from our Rotary club presented me with a prayer blanket that her church friends had quilted. Now how cool is that? Thanks Diana. You know, the support I have had over these past 2+ years from every facet of my life has been incredibly amazing. I really think, no, I know, that is why I am doing as well as I am today. Thank you.

And speaking of Rotary, yesterday I had the privilege, as Chair of the Day, of introducing our guest speaker, Karen Possemato, the Chief of Staff at Illumina, here in town. Illumina is all about genomics and how that new cutting edge technology is coming into play in so many areas of our life, especially health care. It was a timely and appropriate talk, especially as it relates to my past and future journey. All very interesting, and encouraging, stuff.

Back to my spout climbing.

Business as usual. Day at a time.

 

May 17, 2015 (Sun) – What Router to Buy? A Cancer Blog?

Commute-mudIf you think a hard drive is a tough commute or Adobe Acrobat is a gymnast rolling in the mud, you may not get this one.

Yesterday I spent the better (or worse, depending on your point of view) part of 3 hours routerresearching and then traipsing all over town to replace my aging wireless router. For you nerds out there, I had an old “G” Linksys that would not keep our dueling iPads connected to the internet all the way across the house. Ended up buying a higher-powered “N” version that seems to have done the trick.

But, as before, this is not a blog about getting your tech on. In a roundabout way, however, it will touch on connectivity. More on that later.

Business as usualNo, I’m talking about business as usual to the nth degree. So would I be shopping for a router before cancer? Of course. Would I be spending all day at the office working on our non-profit budget on a Sunday (today) before cancer? You betcha. At dinner with friends, would I be powering down a couple glasses of sangria (spiked with tequila) followed by a Rombauer chaser, before cancer?  Absolutely. Would I typically be getting only 6 1/2 hours of sleep before cancer? Unfortunately yes. Should I still be doing all of these things at that level with cancer? Uh, no.

My wifey would categorically agree with the statement that I am pushing myself too far with this business as usual stuff. And I would be hard pressed to disagree. And disagreeing with your wife, in any situation, is not a recommended course of action. However, figuring out how to dial back my daily activities to a lower level than BC is easier said than done. Gotta have a router. Gotta balance that budget. Gotta have my Rombauer. The sleep thing? That I could work on. Maybe it would take some really bad news to press me into (in)action. Let’s not test that theory though, shall we?

ConnectivityOn the connectivity front, last you heard from me I was on my way upstairs to connect with a bunch of lung cancer peeps at the Lungevity Hope Summit in DC. Having only met 2 or 3 other lung cancers survivors in person, it was a Group photo Hope Summittotal trip to be in a roomfull (150) of them comparing notes, sharing stories and treatments and just reinforcing the fact that we are not alone. Lots of survivors there, many of them stage IV unfortunately, but the longevity ranged from the newbies (6 months since diagnosis) to 25+ years. Gives you lots of hope, which amazingly was the title of the conference. Duh.

In addition to the camaraderie, which was awesome by the way, we were also treated to several sessions put on by docs talking about the latest and greatest treatments and options on the horizon. Just keep pushin’ it out. That’s the plan.Survivor pic

BloggersOne of the more fun things was to finally meet (in person) some of my fellow lung cancer bloggers who, with the exception of Dann, I have only met on-line. Here is a picture of a bunch of us. And can you tell we were having fun? And the dinner that Saturday was to die for. Oops, poor choice of words. 🙂 Hey, dark humor has helped keep me going these 2+ years. (Photos courtesy of Randy Elles Photography LUNGevity Foundation).

Since my flight was covered by a grant from Lungevity (thank you very much), I stayed on in DC for a couple extra daACys to visit a few Closetmuseums. Visited the Spy Museum, the Newseum, and the Museum of American History. But since I am the one in charge of our budget at work, I could not justify staying at the Marriott still. Instead I found a 101 year old hotel just a few blocks from the White House. Very interesting accommodations. Although I needed neither a closet nor the A/C for the one night I was there, it was enlightening to see how they managed those features in such “classic” accommodations. The pictures speak a thousand words.

June 2015 calendarBack in the home country of San Diego, it truly is business as usual. Nothing new on the scan front until Friday the 12th when I get my next double dose. Scanxiety should kick in about the 9th or 10th. Keep those positive vibes coming so I can surf ahead of that wave and take advantage of some new options down the road.

Business as usual. Day at a time.

April 19, 2015 (Sun) – Wow, All I Can Say is Wow

You had to be there.

Today was one of the most inspirational days I have ever been a part of. A group of about 65 individuals, consisting of family members, friends, friends of friends, colleagues, fellow Rotarians, fellow Camp Ronald McDonald for Good Times counselors, and even a couple of high school buds (from 45 years ago – yikes) made up Team Craig – Get Fuzzy at the Breath of Hope Lung Cancer Walk. As you know, I’ve been shilling for this program for the past 6 weeks or so and it culminated in this morning’s event.

Breath of Hope Team Pic - 2015Our team was by far the biggest fundraising group, raising more than $11,000. The 2nd place team was less than half of that. But as my wife properly reminded me, it really was not about competition. It was about raising funds for Moores Cancer Center. You know, that place that has helped keep me alive for the past two years. And while I do not know what the final result was in terms of overall funds raised, I do know that our team provided a big chunk of that. Did I mention we came in first? Oops, sorry Kim. Those dang competitive juices again. But it was all for a very good cause. They even asked me to say a few words (gulp) as the top team. Click on the photo for the full effect.Walk final status

But the inspirational part came from all of the supporters we had. While we were fortunate to have a few very generous donors making large gifts, we had more than a hundred others that Thermometercontributed to our team, and thus to the Moores Cancer Center’s, success. But even though the goal was to raise funds, it wasn’t about the money. On a larger scale, it was about raising awareness for lung cancer research and treatments. Lung cancer still gets the short shrift in terms of research funding because of the stigma associated with the disease. The perception is that lung cancer patients are smokers and have done this to themselves. Heck, I probably had that opinion before I became an active, if unwilling, participant. So getting the word out to clarify that misconception is a constant battle.

On a more personal note, and thus the title of this blog, I was just floored at the support given me from all walks of my life. There was so many positive vibes flowing that, even though the event was about lung cancer, I forgot I had it for 3 hours or so. I am still in awe 12 hours later as I finger poke this blog. It’s kinda difficult to put it into words, and as a follower of my blog, you know that is unusual for me. Suffice it to say I was, and am, very humbled by the outpouring scaleof love and support I witnessed first hand. For those that participated in one fashion or another, I cannot thank all of you enough. Just wow.

On the medical front, nothing has happened since I returned from Hawaii except for the reading on the bathroom scale. Reading as in 5 pounds heavier. Once again, my onc-doc will be very proud of me and happy at that result. Unless of course he hears how I gained it (Mai Tais, Rombauer, steak dinners etc.). I know when to keep my trap shut.

Since I have my next set of scans a week from tomorrow on the 27th, I will await the results of those tests to determine my next course of action. I am trying to get a second opinion from the brain oncologist at Moores to confirm (or not) the reading of my next brain MRI. Unfortunately because he is outside my health plan, it most likely will come out of my pocket for the 1-hour consultation, to the tune of $550. I guess we’ve been spoiled SecondOpinion400since we have such awesome health insurance and have had to pay next-to-nothing. I will be requesting a waiver for our insurance to cover this appointment but I’ve been forewarned not to expect it to happen. But I think I need confirmation that re-zapping that apparent fuzzy in my noggin is the proper course of action since it will be riskier than the first go-round.

We will also be doing the regular kitty-cat scan of my lungs to see how those troublesome fuzzies are behaving. Hopefully they are taking a little break with little to no progression from the last tests. Gotta stay in the trial long enough for the next new thing to come around. After hearing about some upcoming clinical trials at today’s walk, there may be something else for me in a few months. Maybe. We shall see.

Next Saturday, thanks to the generosity of one of the members on the Moores Cancer Center board of directors, my wife and I will be attending the big Spark Gala fund raiser. Here we will get to meet all of the major players in cancer research at this world renowned institution. Plus I’m sure we will drop a few more bucks in support of this wonderful establishment. Can’t wait.

On May 1st I will also have the pleasure and opportunity to jet off to DC to attend the 3-day Lungevity National Hope Summit. Hard not to notice the similarity in their group photo (if you click on the link) when compared to the team shot we took today. This is another “can’t wait” opportunity as I will finally get to meet a bunch of other survivors/bloggers who I’ve only met electronically.

Stay tuned for another update after my next set of scans.

Business as usual. Day at a time.