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.

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.

 

October 17, 2014 (Fri) – Business as Usual…Not

How dare I ruin the sign-off I use for every post by changing it? Remember from my last post: sometimes you feel like a nut, sometimes you don’t…stay tuned.

But first, since my Marketing Director convinced me I am no marketeer (actually it didn’t take any convincing), I will shoot Microscopemy wad (not sure I want to know where that expression came from) by getting to the good stuff right up front. To quote my lung-onc after reviewing my CT scans of my lungs from the tubular zapping I had a week ago: “the tumors are barely visible.” And she has good eyes. If I was Life Insurereviewing the images with my eyesight, I would have declared myself cured. Good thing I’m not a doc either. I talked with my wife via phone from here in Raleigh and in response to the good news she said: “I guess I’m going to have you around for a little longer, eh?” Someone else I might have suspected a note of disappointment because my life insurance policy was not going to be collected on any time soon. But this statement, coming from my wife instead, was her way of expressing her relief and gratefulness for the results. I love being able to have a little off-beat humor banter between us.

And the reason I have not updated my posts earlier was that there was some difference in opinion as to what my brain MRI showed. The lab report writeup says “an interval development of an ill-defined nodular enhancement,” whatever the hell Pointingthat means. A second opinion from a neuro-onc-doc at UCSD says they can see no difference between this MRI and the last one I had at UCSD which was normal. I’ll take that opinion over the other, thank-you-very-much. But I have another more finely sliced (higher resolution) MRI scheduled when I return to town late next week. By the way, why does the term “sliced” not engender positive thoughts with Halloween coming up? Hmmm.

Remember my recent post about my visit to Epic Sciences where I spoke in front of their whole company? Not too long afterwards one of the employees there sent me a note that I will cut and paste here:

Thank you so much for coming to speak at Epic. I enjoyed your presentation and it was very informative and I didn’t know at the time how important it would be to my own life just merely days later. Your attitude spirit was inspirational and I was very touched by your story. In a strange turn of events, my non smoking healthy mom was just diagnosed with stage 3b adenocarcinoma lung cancer. It gave me a lot of strength knowing your story and how you have experienced things and helped me know what to expect when waiting for all the tests for the last two weeks. We just saw an oncologist for the first time today at City of hope in LA and I am looking forward to my mom starting treatment soon! Please keep in touch! Thank you again for sharing your story!

Now that is why I blog. OK, not the only reason but it sure feels good when I realize that some of you are getting some positive benefit out of my rantings.

So, why would business not be usual? For my Facebook friends, you know why. A week ago I got a call from my wife while I House floodwas at Home Depot (my favorite hangout) telling me to get my rear home. The reason? A major flood in our house that left 3 inches of water in our bathroom and into my office and master bedroom. The plastic connection on the end of the hose connecting the water supply valve to the toilet just snapped with nobody in the room. Luckily my wife was outside so this only went on for 20-30 minutes before she discovered it. Imagine if we had been out of town? I don’t want to imagine that.

But of course the water seeped under the drywall into the living room where we have (I should say had) a 3/4″ solid wood floor. No longer. warped floorIt totally warped out and has since been torn up and hauled off. We now have a very nice concrete living room floor. Of course our carpet was only 6 weeks old. Of course. Why couldn’t that have Carpet fanshappened 8 weeks ago? We could have gotten our new carpet paid for. My wife jumped on the phone and called ServPro to come out and suck up the mess and leave behind a dozen very loud fans that ran 24/7 for two days straight. Had to sleep in the den the first night and our guest room the 2nd (once my wife bought a bed to be delivered the same day).

I’d say, “eh, small stuff,” but I’d be lying this time. This is pretty big stuff. But my wife is handling everything including dealing with the insurance issues, carpet and wood floor replacement etc. Gotta hand it to her, she jumped right in and just took care of business. Today she had the guy who remodeled out kitchen come over to give her a quote on the flooring. I suspect she was also working on a quote to completely remodel our master bath and office area, taking advantage while her hubby is out of town. Gotta work those frequent flyer miles back up, eh? Who knows what I’ll be coming back to.Cup

While at our friend’s home outside of Boston, in addition to the multiple bottles of Rombauer we were treated to, I was also given the gift that I model here. Very cool.

Toasting DannSo my buddy Dann, as you know, was admitted to the trial here in San Diego. He and his wife flew down last Monday and we had dinner together. Originally my wife was going to cook but since our house was a bit discombobulated, we went to the restaurant where my son is the chef. But before we left for dinner, we knocked off a bottle of Rombauer that Dann had brought in celebration. We brought our own BA-BA to the restaurant so we ended up polishing off two bottles in total. Now that’s a celebration. On Tuesday he popped his first A-team pill, duplicating the selfie holding the first pill I posted back in July when it was my turn. So happy he got in.

So it has been 20 months since my first diagnosis. Yes, I have had to deal with constant needle pokes, radiation, multiple Lyle LovettMRI’s, CT and PET Scans, twice a day injections of Lovenox into my rapidly black and bluing stomach, a fat leg and foot, daily pill popping, and worst of all, Lyle Lovett hair. But I will take all of that, and then some, because it means I’m still around to take all of that. And then some. I think I might throw a huge party in February when I hit my two-year mark. Anyone care to join me?

Business as (not) usual. Day at a time.

October 9, 2014 (Thursday) – Just a Little Testy This Week

Testy2So why, pray tell, am I tweaked (not twerked – that would look completely different) this week more than others of recent times, some of which might have offered plenty of opportunities to unload?

Actually, I’m not.

But you know me. Use the title to suck you in, and then you feel obligated to finish it out. Heck, I should have been in marketing. Right now my Marketing Director is going, “uh, no.” She’d be right.

Taking testSo the testy nature of this week that I am referring to is the the number of tests I’ve been (or will be) subjected to. Started off with an EKG Monday morning along with another blood draw (two tries of course). Heck that beats 3 from the Blood draw 2last time. The clinical trial tech dropped the comment “hmm, that looks different” when viewing the EKG strips. Didn’t get a chance to have her clarify that but since there were still squiggles on the graph, and I haven’t fallen over or received a phone call, I guess it was hunky dory.  Then yet another blood draw later in the day, because, as you know, the two medical organizations cannot share data. Don’t go there. Yesterday I had my every-six-week (I think) echocardiogram, aka, a knuckle noogie. I opted to have this done at UCSD instead of the Hillcrest site in order to avoid the technician I had last time that left bruises. Or at least it felt like he did. Lo and behold, who walks in? Of course. Apparently he occasionally works up at the UCSD site and I was lucky enough to get him once again. For whatever reason this time around he was not nearly as sadistic. And now tomorrow (Friday) comes the biggies: my six week CT (aka BodyScanCollagecat) scan and the brain MRI which now must be done at the same time every time. At least both are at the same location and I just walk 20 feet away for the cat-scan after the MRI. Two and a half months into the trial, I think we finally have the schedule down. That’s what happens when you are el numero uno in the trial. Should have the results early next week. Could use some more of your mojo to help ensure positive, or actually in this case, negative results.

Of course the number of tests this week pales in comparison to the week when I started the trial back in mid July. Hard to believe it’s been that long. And my buddy Dann would scoff, and probably say pshaw, at the number of tests I am whining about. And why would that be? Because he GOT IN THE TRIAL! Yup, he apparently is a mutant. Or least his cancer cells are. So this week he went through the whole shebang, Rombauereven more time-compressed because he flew down from Portland and they crammed everything into two days. Thanks to those of you who clicked on his blog and offered some encouragement. Obviously didn’t hurt. He and his wife are flying down and are coming over for dinner on Monday to celebrate his first pill popping on Tuesday. Of course we will have a bottle of Rombauer chilled for the occasion. I understand that alcohol kills germs.

Last week my wife and I were able to take that trip to our friend’s house outside of Boston. It was the first trip my lung-onc authorized. Handled it fine with a combination of a bulkhead seat, an aisle seat, and getting up and down and walking the length of the plane, much to the eyebrow raising of the passengers as I just walked back and forth. That and wearing these new very stylish compression stockings that seemed to help quite a bit. In fact, right now my leg and ankle are much improved. Reduced in size from ginormous to just fat. But all of that was forgotten when we arrived at their lakeside house that required the last mile traveling on a rutty, dirt road. Here is a view from their small boat dock. I think my BP dropped 30 points. Of course the several bottles of Rombauer they had waiting upon our arrival did not hurt. Ahhhh:

Brooks Pond

Next week I have another trip, this time to Raleigh for business. Looking forward to hooking up (lets be very clear for my wife’s sake: not that kind of hook-up) with some science center industry peers. Trying to figure out the logistics of how I will manage my Lovenox injectiontwice-a-day Lovenox injections, since, with the time change, my schedule will be 10am and 10pm instead of 7 and 7. That could get a bit problematic, especially since this 61-year-old is not quite the man-purse carrying kind of guy and I need a place to stash the syringes. And with that schedule, most likely I will be in the middle of something when my very calming alarm song goes off on my phone. Eh, I’ll figure it out. Small stuff.

So I realize this blog is not up to the level as my more philosophical rantings of late. But hey, sometimes you feel like a nut; sometimes you don’t. Fifty points if you know where that came from. But I wanted to get an update out, even if it was something less than noteworthy. My next blog will provide the results of my scans from tomorrow. Let’s hope I don’t get the results while sitting on a tarmac in a far-off city like last year. However, I have no reason to suspect anything other than more awesome comments from my lung-onc. I want to maintain my status as her poster boy that she brags about to her colleagues regarding the results from AZD9291 (the A-Team).

Business as usual. Day at a time.

September 21, 2014 (Sun) – Life in the Slow Lane

Slow laneWhat fun is that? Life in the slow lane? Aren’t I supposed to be rapidly checking off items on my bucket list? That would usually mean traveling in the fast lane. Then again, you have to have a bucket list in order to cross things off. And I don’t. Nor do I have a frog list. You know, things you want to do before you croak. Or a haunted list – things you do before you give up the ghost. OK, I just made that one up. But you get the jist.

Why the heck don’t I have one of the aforementioned gotta-do’s? Doesn’t everyone, especially those in skydive graphicmy situation, have a dozen or more items that they want to accomplish before the inevitable? Visit every National League stadium? Drive a race car on a Le Mans track? Sky dive?

For some reason, and I can’t really explain why, I have none of those urges. Or anything else that I consider necessary for a fulfilled life. Heck, if I had a list and completed it, then what? I guess you could say I do have bucket-lista bucket list consisting of one solitary item: living until I’m 90. That doesn’t mean I don’t plan on having all the fun I can in the meantime. A lot of people might have traveling to Hawaii on their list. Heck, we’ve done that multiple times. I’ve traveled to Europe twice. Several trips to Canada. A Caribbean cruise. Married my perfect match. Two wonderful kids. I guess I’ve probably checked off a bunch of things on other people’s lists.

Other than the aforementioned (very) high points, I prefer day-to-day simple pleasures rather than planning for some bungee jumping expedition off the Golden Gate Bridge. Golf, softball with my son, dinner with Duffy boatfriends (with, of course, Rombauer), my Rotary involvement, Duffy Boat cruises in Newport Harbor with my family, even watching Groundhog Day for the 20th time. These are the things that make my life very enjoyable. And the types of things I look forward to.

OK, guess I was continuing my philo-babble from the last blog. Time to switch gears.

A guy I know from the Old Pros club I belong to came across my blog a while back. A week and a half ago he invited me to his company, Epic Sciences, to chat with what I thought was to be a half dozen or so of his lab staff. His company is working on developing blood tests that could eventually replace invasive procedures like biopsies to detect types of cancer or cancer mutations. That would be a wonderful technological breakthrough in this biz. In any case he thought it would be epic_sciencesgood to have his staff meet someone on the other end – someone who was a beneficiary of the type of work they are doing. Little did I know he had invited his whole company for this one-hour informal chat. I joked with them that our little get-together was probably a $10,000 meeting. I was sitting at a belly up table with my buddy who threw softball questions at me in front of 65 people. An amazing experience. I got as much or more out of it than they did as I now got to see the type of people behind the research and genetic breakthroughs that have kept me alive with designer cancer drugs.

This past week I discovered that my blog has just passed the 50,000 “views” threshold. Wow. As Sally Fields said, “You like me. You really like me.” Actually I think it’s one person (my wife?) clicking on my blog 50,000 times to humor me. But it shows you must appreciate some off-beat, and sometimes sick, jocularity. Yeah, just my type. 🙂Shaving bloodElectric razor

Still trying to get used to shaving with an electric razor. Had to give up the blade as slicing and dicing was probably a bit too much of a risk now with the thinner blood coursing through my veins. OK, maybe not of all of them.

Still dealing with a fat foot as I guess it will take a long time for the clots to dissolve away. Small stuff. Actually got to play golf yesterday at an awesome course. Held up quite well. Surprisingly had 4 pars and a birdie on the back nine. You’ll notice I’m not mentioning the front half of my escapades. But once more: a simple pleasure. And with family. Doesn’t get much better.

Scottish fightersAnd finally, my daughter brought me a present back from Scotland where she went on her honeymoon. It was a set of 5 small Scottish Highlander warrior figurines. Still didn’t get it until she told me that these fighters have a motto of Bydand, meaning steadfast, loyal, enduring and courageous. Very cool. I’m going to place them all over the place where I will see them daily.

Who needs a bucket list?

Business as usual. Day at a time.

September 11, 2014 (Thur) – Phil it to the Brim

groundhogNo, I have not suddenly become challenged in the spelling arena. And I am not referring to philling up any more lung-suck bottles. Nor am I referencing my buddy Punxsutawney Phil, the star of one of my favorite movies, Groundhog Day. I definitely had to Google the spelling on that Pennsylvania town.

A good friend of ours challenged me to explain my switch in philosophy as it relates to the “glass-half-full” attitude change. But before I go all Dr. Phil on you, I owe you an update on the last couple of weeks.

So, where have I been? Like one of my blog posts of yesteryear (whatever that means), life just got in the Hang fanway. And that is a good thing. Business as usual, remember? Work, plumbing repairs, softball games (as a cheerleader), volunteering, hanging a new ceiling fan, stabbing myself twice a day, Rotary meetings, yadda yadda. Especially yadda yadda. Most of this was much to my wife’s chagrin. And she was not grinning, trust me on that. So sitting down for 20 hours to write this blog just didn’t make the cut. What? You think I whipped out these gems in an hour or two? OK, yeah. Maybe 3 hours. But 20 sounds a lot better. Bottom line though is that other than a fat leg and foot from the blood clots, I am doing very well. The A-Team appears to be kicking butt.

plumber_pipeHad one more tiny glitch however. Since I am the first one in this trial here, they are learning as bit as they go as to the idiosyncrasies that Astra Zeneca (the A-team maker) require. Since I originally had some brain mets in the early going, they apparently need a brain MRI every time I do a follow-up CT scan. So I had to interrupt my incredibly enjoyable pipe repair work outside in the mud on a Saturday to go in for that MRI. Probably a toss up as to what was more enjoyable. But now they have all of the tests they need and I know exactly what will be required every 6 weeks from here on out. Considering I had the other MRI (that they didn’t know I needed) only a month or so ago, and it came back clean, I am not even calling to get the results of this one. How’s that for glass-half-full, eh?

Although my business trip to Toronto this month was nixed, I am green-lit for our planned trip to our friend’s lake-view home in October, just outside of Boston. Because of my leg clots, I gotta score me a bulkhead seat though to give my legs some room and then be sure I walk the aisles a lot. I understand Southwest has a “blue sleeve” pre-boarding pass you can get for situations like this. The problem is that I look perfectly normal and people have taken advantage of this policy so I’m bound to piss some people Compression stockingsoff as I walk past them. Them’s the breaks. Still awaiting approval, believe it or not, for insurance to agree to cover the cost of some very stylish custom compression stockings. Somehow they are considered “durable medical supplies” so it has to go through the process. Just a glitch.

gooeyOK, on to the more ooey gooey stuff.

Before my diagnosis a year and a half ago, I really was a glass-half-empty guy. Always looking at what could go wrong in a given situation. Allowing the negative side of any circumstance outweigh the positive. I’m honestly not sure pollyanna2where that perspective originated but I do know it has been part of my makeup as far back as I can remember. I was the pessimist and my wife the Pollyanna optimist. Not sure how my wife saw around that and agreed to marry me unless she thought she could change my outlook.

So what’s different now? Well, for one thing, I have cancer. Duh. So things are lot more black and white than before. Previously I could have reacted to different situations in a lot of different ways. But suddenly, as I’ve said before, I now see only two options. I can crawl into a ball, withdraw, and let things take their course. While I wpathsould still have been on the same treatment regimen I am now, I would not have had the healing power of the positive thoughts and prayers that I have received from everyone because I would have tuned everyone out. Or I can take the other road (previously less traveled by me) and head down the path that I have chosen to take for the past 19 months. But who’s counting? As Lincoln said, and a friend reminded me, “folks are usually about as happy as they make their minds up to be.” So while I may not be jumping up and down with enthusiasm about having to give myself a stomach injection twice a day, it’s just something I do now, like brushing my teeth and flossing. Yes, I floss. I plan on outliving my teeth so I want them to last at least another 25 years. It’s just a new normal.

But what’s funny, if you can call it that, is that I don’t think I’m a glass-half-full guy now. That may seem a weird conclusion considering the relatively positive tone of most of my blogs. I just know that this is the path I’ve opted to take and I do not plan on diverging from that course.

bad luckI never have pulled the “why me” attitude, although I suppose I could have. Heck, I’m a good guy overall. I have never smoked (not counting those funny things back in college mumble mumble years ago). So I consider this whole episode just (bad) luck of the draw. And while I continue to ignore statistics, I do know the facts. I have cancer and there is no way around that.

Am I scared? Hell yes. Does this feel like a nightmare that I hope to wake up from? At the beginning it did, but I quickly accepted my situation and I do not dwell on that. A fellow cancer blogger (Ruth Rainwater) recently addressed the opinionCourages and comments from people about how we can be considered heroic or courageous with the attitudes we portray in our blogs. As she said, we are people with cancer, going about our daily lives as normally as possible. Is that courageous? Nah. Is it heroic? Double nah. Save those descriptors for those that lost their lives 13 years ago today. I will grudgingly accept inspirational, although even that adjective can be hard to swallow, since I’m just a guy with cancer who chats about it. I am very pleased, however, that some people are entertained and informed by my blog. I know how hard it was for me initially and reading the blogs others in my (currently fat) shoes really helped understand the journey.

Speaking of people reading my blog, a fellow C-traveler from Portland who I met because of my blog, is trying to get into the same trial I’m in at UCSD. Dann Wonser found out about the trial here through me and so I am very glad about how this blog is helping in situations like that. He is coming in at the tail end of the trial opening and still needs to qualify but we are all hopeful he gets in. So, since I’m in a pretty stable situation right now, please send your positive thoughts and prayers his way. Click on his name and leave him a comment on his blog. He is on a real roller coaster ride right now and could use everyone’s positive vibes.

Monday is my regular follow-up with my lung-onc at Moores. I’ll be getting a new batch of A-Team poppers and, of course, an EKG and blood draw. And then another blood draw that day at my regular medical provider, of course. 🙂 Small stuff.

Business as usual. Day at a time.

August 25, 2014 (Mon) – Clickety Clack…Clickety Clack…

Those of you following along (that would be all of you, right?), should probably get the reference in the title. But we will come back to that later in this blog. Sorry to disappoint. But you won’t be disappointed. 🙂

The last blog entry was made lying flat (OK, I was sitting up) on my back in a hospital bed a week ago. As you know, although I Curveballobviously can’t hit a slow, underhand pitch to save my life, I was pitched a curve ball a week ago. Honestly I’ve probably handled that pitch better than the one in my regular league. But things have certainly taken a few unexpected turns. Looking back on my blog of August 12th, I closed with “So nothing unusual going on for the next two weeks at this stage.” Oh, how much more wrong could I have been?

I was discharged as expected last Tuesday after overnight observation. And only after I demonstrated my stomach injection technique (with the Lovenox blood thinner) at 6am so they were comfortable with turning me loose to do my own stabbings. Piece of cake. If you like that kind of cake. Not my favorite.

But I was hit with another bit of surprise when the doc actually read the results of the ultrasound and CT scan that confirmed both clots in my leg and lung. I had assumed (and you know the danger with that) that I had a clot in the leg and one in my lung. Oh I wish. Turns out I had 4 fully blocked veins in the leg and multiple clots (emboli) in my lung. Here’s the official report: (click to enlarge)Vein sonogramEmboli report

So the old freakout-ometer took a monstrous jump upon that news.  I had done a bunch of research on lung cancer (of course) but Anklesreally nothing on DVT’s or PE’s. I’m really starting to dislike acronyms.  So 4 blocked veins just might explain the swelling in my leg and ankle. Jathink? Here’s an ankle shot comparison, this time using my very own props: (click for full effect)

So a week later I have picked up an incredibly useful skill at the art of needle insertion 2x a day. I could give some of those nurses a class. You know, that ones that had do-overs when they tried to locate a vein. In their defense, I don’t have to aim for anything in particular other than a slab of flab on either side of my belly button (but at least 1-2 inches away, per instructions). Knew there was a good reason to add that layer of fat over the years. But since I have to jab both sides every day, I try and avoid hitting the same spot that was recently used. I found a new technique in using the freckles on my stomach as guideposts. Hey, I never knew I had the big dipper framed in freckles on my Constellationsstomach. Tonight I aim for Orion’s Belt. Gotta keep a tight schedule since Lovenox has a short lifespan in your body so for now I’m on a 7am & 7pm schedule. Oops, 15 minutes from now I’ll have to take a short break.

So I now have some new risks to be aware of. The blood clots should dissolve over time but it could take 6 months to completely resolve. Regular daily activity (that doesn’t involve jumping up and down) poses no particular risk for additional leg clots breaking off and heading north, but there is always a risk. And my doc nixed my upcoming business trip to Toronto as she didn’t feel it would be a great idea for a patient with active leg clots to sit in a plane for so many hours and travel to a foreign country.

As for the blood thinner, that presents its own set of risks. Obviously I want to stay away from any unintentional bloodletting. I tried to explain to my wife that I could get cut while washing dishes but she wasn’t buying it. But I might, read might, get green-lighted (lit? – help me out here Wendy) for softball down the road if I’m careful and not dive headfirst into a base. Head slideCuts would take a bit longer to stop bleeding and bruises would probably be bigger. But the real risk is for head trauma that could cause bleeding on the brain. So if I play, I would probably wear a helmet for that run down first. Most infielders are pretty good but but a few errant throws are known to occur and it would not be good to get hit in the head with the softball, which really ain’t soft. If that were to happen, I just head off to ER and explain I got hit on the head while on blood thinners so they can take some preemptive action if needed. The bigger danger is waiting until you show some symptoms before going in because that would be too late. No bueno. Guess I’ll have to give up my lifelong dream of becoming a stunt man.

Alright, you’ve been patient long enough. I have to admit I almost started writing this portion of the blog a couple days ago because I cheated and got a sneak preview of my scan results since they had to do a CT scan last Monday to check for emboli in my lung. While they were looking for clots, they also had some favorable comments regarding the tumors and their current state of affair. (oops, gotta go hunt for Orion’s Belt…). OK, I’m back. Friday I went in for the CT scan that was used to compare to the one taken just before the trial started.

So today I had my meeting with the lung-onc-doc at UCSD today to go over progress after 6 weeks on the A-Team (AZD9291). When she walked into the room she started with the phrase “incredible results.” Followed with “better than I could have ever hoped for.” She had me at “incredible.” OK, our day was made. Let’s make that our week. Nah, our month. Actually it was the beginning of May when I got the bad news that Tarceva had stopped working its magic so this is the best news since. The A-Team Scan comparisonRoller coaster up2has a similar longevity meter (6-12 months or so) but the drug has not been out there long enough to get really definitive stats, and you all know I ignore those anyway. I’ll take the reprieve, however long it is. So ergo (there’s that word again) the reason for the roller coaster click-clacking its way up the slope for a change.

Today I had to have my blood drawn before my appointment. This was after last Friday when I had an injection for the CT scan contrast. I then went to my regular health care provider for a second draw. The reason why the two can’t share results would fill 3 blogs so I won’t bother. Tomorrow I go in for my scheduled 11-hour procedure with blood draws and EKG’s every two hours. And then Wednesday I have to go back for Pincushionone more follow-up red stuff extraction. If you add it up, since Friday, and by Wednesday, I will have been stuck 17 times (counting my Lovely-nox selfies and assuming all the nurses get it on the first try). Can you say pincushion?

But after Wednesday, things should, read should, settle into more of a rhythm, even though my wife would confirm that I have none. I may get to that philosophical blog yet. Oops, forgot I have my monthly Zometa infusion Friday. OK, make that after Friday

Staying home for this past week has been its own trial. We did get away to visit my brother in Orange County over the weekend however. It was nice to get away even though I was only able to ride as an observer in the cart while the group played golf.

And finally, I have to thank my co-workers for two awesome get-well gift baskets that were delivered recently. Very cool.

As a friend of ours said the other day, EGBOK. I had no idea what that meant but she explained it as Everything is Going to Be OK. Yes indeed. It will.

Business as (a new) usual. Day at a time.

August 18, 2014 (Mon) – …And the Roller Coaster Takes a Big Dip

Just when you thought it was safe. Hey, it was Shark Week after all. So no telling what could happen. You could get caught in a sharknado, for example.  image    

Well, because I really did not have any content for a blog update, I was going to make this a more philosophical one. Sorry Lynn, you’ll have to wait.

Instead, I am typing my blog tonight on my iPad while lying in a hospital bed. Surprise, surprise, surprise! So, as before, don’t expect much of the cutesy graphics because it’s much more complicated using this device.

So how did I arrive at this location you ask? Glad you asked.

Just when I was finishing my last entry blogging about how well I was feeling, the worm began to turn. I was feeling short of breath again (abbreviated S.O.B. of course) and after a couple days got an appointment for what I expected would be my lucky 3rd lung-suck thoracentisis. Yet when I went in last Friday, using the ultrasound, nary a drop of fluid could be found. Hmm. What the hell? So what could be causing my air gulping after two flights of stairs?

My clinical trial CT scan is scheduled now for this Friday. This is the scan that they will use to compare against the one I took just before the trial started and thus see how the A-Team has been doing. I figured I’d wait for that scan to see if they could also figure out what was causing my breath shortfall.

Best laid plans.

The area behind and on the inside of my right knee has been bugging me a bit over the last week but I brushed it off as probably something I pulled slightly playing softball, a fairly logical conclusion based on my imagehistory. In fact it wasn’t bad enough to keep me from playing in our softball playoff game yesterday. Of course I went 0 for 4 again. Not sure why they let me keep playing on this team. Maybe it was my pitching or the 3, almost 4, double plays I turned at the rover position. Not that I was counting or anything. 🙂 Always looking for a silver lining….

Yet, when I woke up this morning I could hardly move my right leg. Had to basically lay my pants on the imagefloor to put my leg in as I couldn’t bend it. Of course I continued my wishful thinking (and brain challenged) approach to the issue by assuming it was something I did trying to run out one of my ground balls. Nyet.

So I sent my lung-onc an email this morning explaining my symptoms, and I received a fairly quick response. It essentially said, though in not these exact terms, to get my ass into emergency as I possibly had a dangerous blood clot in my leg (deep vein thrombosis – aka DVT). Nothing to fool around with. OK, my scare meter took a big hit.

So in the ER they confirmed via ultrasound that yes, I did indeed have a blood clot in my leg. Scare meter jump. Apparently cancer patients are considerably more susceptible to imageblood clots than the average Joe. Maybe if I change my name to Joe? They then took me in for a CT scan to ensure that no clots had broken off and traveled into my lung arena. Scare meter off the chart when they confirmed a clot in my left lung as well. (aka pulmonary embolism – P. E.). Just love these acronyms. Hey, I thought I was supposed to know well in advance when things were going south. I wasn’t prepared for all of this immediacy crap.

So that brings me to the hospital bed where I will be overnight for observation while they monitor all of my vitals. Late in the afternoon they gave me an injection of Lovenox, a blood thinner that will become my BFF apparently. In fact, once I get out of this place I will be in charge of giving myself two jabbings a day with this stuff into my belly roll for the foreseeable future, likely forever. Lucky I have plenty of slab to grab to give myself the injection. Those of you with diabetes will go eh, no big deal. And I’m sure I will get to that point (intentional pun) soon enough. So tomorrow morning they will observe while I do my own masochistic stabbing to ensure I know how to inject myself properly. Hey, learn something new every day, right?

So since this is a blood thinner that I will be on, perhaps forever, I need to be concerned about any possible injury or cuts. Contact sports are out so I guess my weekly rugby games are history and I won’t be able to defend my UFC championship this year. Bummer.

But there is that same disagreement I had earlier in the year when we debated about whether the softball I play is a potential contact sport. I may have just played my last game if indeed I lose that argument. Perhaps they will let me play if I wear a batting helmet. Stay tuned Steve. Skiing? Problematic most likely. Guess I will just have to get a lot better at golf.

Next update will probably be early next week when I get the results of the scan on Friday. Stay tuned on that as well.

Business as usual, although we have a new business plan. Day at as time.

August 12, 2014 (Tue) – A Potpourri of Prolific Proportions

cornucopiaOr perhaps a cornucopia of considerable content? Maybe a slew of substantial substance?

Maybe I’ve been playing Words With Friends too much. Then again, these words are mostly too long for that Alliterationgame. Basically this means that I could not come up with anything for a title other than some lame-o alliteration of awful abundance.

Essentially lots of things have happened in the last two weeks since my last post, but mostly less than noteworthy notice. Oops. Sorry. So here is a quickie list of items to get you caught up to date on: eye issues, swollen ankles, multiple blood draws, clean brain MRI, upcoming tests…

MRIBeep beep, back up the truck. Did I just say clean MRI? I don’t think that is less than noteworthy. I tried to sneak it by you to see if you are really reading this. But here’s the deal. Apparently because of my original historEmpty brainy of having brain mets back at the beginning of my journey, the trial was supposed to get a baseline scan of my brain at the beginning of the trial. So last week, when this was discovered, they rushed me into the mag-machine for that test. And it wasn’t until yesterday that I finally got the results. To quote: “Stable brain MRI with gadolinium enhancement. No new suspicious mass or enhancement.” In other words they found nothing. Why is that not surprising? I’m sure many of my close friends would corroborate that statement.

Sorry you didn’t get the cutesy calendar reminder as per usual but it caught me off guard and came and went pretty quickly. I’ll be sure to include one on my upcoming CT scan, as soon as I have a date for that. Now that will be the biggie since it will show how well the A-Team (AZD9291) has been doing (or not doing). As good as I am feeling, I would be very surprised if it doesn’t show some positive effect.

ankle swellAs for some of the other mentioned material (oops again) above, I occasionally have had some bouts of ankle swelling. But it comes and goes and happens equally to both ankles at the same time. The lung-onc at Moores did not feel that was a huge concern, that it was not out of the ordinary, but of course, said to keep an eye on it. This is not my ankle but it looked similar.

As for my eye, a week ago this past Sunday, I started experiencing some eye irritation in my right eye. Seemed like something had invaded it like how you would normally feel if something got into it. But typically that works its way out in an hour or two, right? Well, it bugged me until Monday afternoon when it finally started feeling a bit better. Yet, when I got up Tuesday, I could hardly open it due to the pain. The lung-onc I saw that morning was concerned that I had some Bloodshot eyeother more serious issue and indicated I needed to see an ophthalmologist as soon as possible. But now we dive back into competing medical groups. It took until Friday before I was able to see an oph-doc, and that was only after my regular onc-doc called his sister-in-law, the eye doc, who squeezed me in. By then my eye had seemed to return to a more normal dry-eye discomfort. After all sorts of less than pleasant eye tests (I really don’t like anything near my eyeball), it was confirmed that I had no scratches, nor a detached retina or anything else out of the ordinary. But it was recommended that I ramp up the “Refresh” eye drops because my eyes were definitely way too dry.

Of course, there is more to it. What, not surprised? So in standing and leaning back and titling my head back to put the drops in, SternumI experience some reasonable discomfort in my sternum area. What the hell? So is this from scar tissue from my early lung zapping that is being yanked? Or just stretching a part of my anatomy that has not seen any exercise or stretching in the last 18 months? Of course, that would apply to my whole body. Or could it be something, wait for it…more nefarious? Who the heck knows but unless it worsens, I  will wait until my appointment on the 25th to chat about it with my lung-onc. And the CT scan (sometime near the end of this month or early Sept) should confirm or deny anything else going on.

But here’s the bad news: I went 0 for 4 in my softball game Sunday (but we won the game). And my wife killed me in ping-pong the other day. No mercy for this poor C-boy…Hey, business as usual in both regards.

File3000 (6)I would be remiss if I didn’t mention that yesterday my wife and I celebrated our 35th wedding anniversary. A year and a half ago, there was some doubt that we would get to observe that milestone. Now I can’t wait until our 50th.

So nothing unusual going on for the next two weeks at this stage. But I feel a different kind of blog brewing. Stay tuned Lynn.

Business as usual. Day at a time.

July 28, 2014 (Mon) – Just Call Me Uppity

upYeah, I suppose I could get a little attitude going. Easy to get a little cocky right now. But in reality, it should be altitude. I know you’ve been waiting for an update. And the emphasis is on UP-date. So if I’ve been too subtle, I am doing really well. Things are looking up. Everything is on the upswing. I ended the week on an up-note. Appetite is up. Golf score is up. Oops, how did that get in there? Well, you get the jist. So bottoms up!

12 days into my new A-team (AZD9291) treatments, things have turned around significantly from where they were just two weeks ago. I now take the stairs at work without thinking twice. Maybe not two at a time but stairs nonetheless. I Stairscan sleep on my bed (not the recliner) without any issue. I even played 18 holes of golf yesterday on a regulation course. Ergo the slip of tongue above. What, a high golf score is not good? Why didn’t anyone tell me? Got more than my money’s worth then. But no side effects that I can discern, other than perhaps a bit more of a dry-eye that I need to keep lubricated. No big-D; no opposite of big-D. No super dry skin; at least not any more than before. Bottom line: feeling pretty damn good. 🙂

Half full glassNow let’s be real. Even the glass-is-half-full-guy (who prior to dx was a half-empty guy) has to admit that it’s way too early to draw any conclusions. 12 days does not a success make. My next scan will be in about 4 weeks which will tell the tale. But whatever the reason, I am no longer severely short of breath and my appetite has returned. In fact the other night I powered down 4 fat, eatinghomemade tacos, not the cheesy (oops) Taco Bell variety. My wife looked at me like “Who are you and what did you do with my husband?” A week earlier I would have had to force down one taco. And I have no intention of reprising my role as a lung-suckee, thank you very much. So no more gross liter bottle pictures.

Thursday I have my 2nd clinical trial followup appointment to include a blood test, urine test, and EKG. They forgot to tell me about the urine test last week so between an empty bladder and performance anxiety, it was a bit of a challenge. OK, TMI. I get it. I’ll be better prepared this week though.

Appropriately enough, I am watching Rocky III as I work on this blog. I have to have mindless chatter in the background so I can concentrate on my endless witticisms. Yeah right. But since Mr. T is part of the A-team, I am torn between rooting for him (Clubber Lang) and Rocky. Have to go with Mr. T.  Heck,  he wins the first fight anyway. Oops, didn’t mean  to spoil the outcome for anyone…

Google yourselfOK, how many of you have Googled your own name? If you didn’t raise your hand, you’re lying. We’ve all done it, out of curiosity mostly I suppose, to see where we might pop up. Now if your name is John Smith, you might have a bit of a problem. But “Craig Blower?” Not so much. I even set up a Google alert to e-mail me whenever my name pops up on the internet. Want to be sure nothing nefarious (there’s that word again) shows up. Occasionally I’ll get a hit on Craig Blower, the teacher in Michigan, or Craig Blower, the dairy owner somewhere in the Midwest, or even Craig Blower, the convict in an Irish prison. No, we are not related. But this past weekend I got a hit indicating my name was used in someone else’s blog. Of course, I had to check it out.

Pam Hawley is one of my blog readers who, like many, remains in the background but stays on top of my journey by subscribing to my updates. I knew her name from when she, and a lot of you, came out of the closet upon request during my Rocky Horror blog back in January. But I had no idea she wrote her own blog. The Google hit I got was from her recent blog update where I was Blog word.mentioned.  Many of you read my blog but I am not aware of any personal specific connection to it unless a comment is left behind. In this case, Pam’s mother was dealing with her own battle with lung cancer. Unfortunately her mom recently passed but what Pam wrote in her blog had me choked up for the 2nd time in 3 weeks. You can read it here.

As you may know, I originally started my blog to keep people updated so they wouldn’t feel awkward about asking me about my status. I know there are those of you that have a personal connection, either with their own cancer journey or that of a loved one. And especially those I don’t know who have found me via one of the other cancer sites or even Googling various cancer phrases. But I really do not know how many read my blog for that reason. However, after reading Pam’s blog this past weekend, I am honored and touched to know that my writings have played some small part in the journeys of others. Thanks Pam.

Business as usual. Day at a time.

July 17, 2014 (Thurs) – The A-Team has Entered the Building!

ID quoteThose semi-nerds in the audience will recognize those words from the movie Independence Day at the tail end of the President’s speech before the big battle. Heck, who knows if they stole it from some other movie. But it’s the quote that counts and I found it to be eminently appropriate. The fact that I’ve watched this movie almost as many times as Groundhog Day means I could have written this without even looking it up.

Today we celebrate our Independence Day.

OK, that was actually the last line in the speech but not only would it have given away the movie title, but it doesn’t necessarily fit. So I will twist it to make it work. How about: my independence from sitting on my butt doing nothing to fry these fuzzies? Close enough.

Today was Day One where we re-initiated the fight. The A-Team (AZD9291) has taken over the battle where Tarceva left off. On a side note, I’d love to thank the anonymous person who was the first to suggest the new name, but whoever you are, thanks. It was the clear consensus winner. The depth of my IP backtracing internet sleuthing skills tells me you are from Texas.

The short version: I passed all of the necessary plethora of tests and this morning, precisely at 8:47am, I switched back to my former A-Team pillpersona as a pill popper. Thanks to auto-correct on an e-mail I almost sent to a friend, it tried to change pill popper to pill pooper. That would have had a whole different meaning; and result. But here I am getting ready to down that sucka for the very first time. I am officially, officially, officially, in the trial. I have to admit, yesterday after getting word that I passed the tests, when I came home from work (of course I went), I broke down out of sheer relief. I think that is the first time I allowed myself (not that I had any choice) to shed a few since I dropped a few tears for the opposite reason back in December in my Chi-town meltdown.

OK, I broke my own rules. I started off with the highlights without making you wait for the big stuff at the end. But since quite a few things transpired since my last blog on Saturday, I shall return to the chronological version for those of you who like to read the whole book and not just skip to the end.

Over this past weekend, after my 2nd lung-suck last Friday, I not only didn’t feel better like I did after the first one, but actually felt worse and had developed a fever to boot. Toughed it out until Monday morning and after a few calls, was directed to come back in for yet another X-ray to see how it compared to the one Friday after my procedure. Apparently no change, and perhaps even “a little better” according to the Sharp lung-doc. But in case there was an infection causing the fever, my regular onc-doc prescribed an antibiotic. But having learned to be my own advocate and being ever watchful over my own treatment, I sent over Bad_medicinethe name of the antibiotic he prescribed for me to the coordinator running my trial over at Moores. You know where this is going, don’t you? That particular medication was on the no-no list for the trial and had I just said duh and taken it without checking, my entry into the trial could have been delayed another two weeks. Moores prescribed an alternative that was OK to take. Lesson to you all: you gotta ask questions and triple check things, especially if you are working with more than one doctor or medical group.

So no formal definitive answer on why my breathing remained difficult other than 2 theories: one, my lung just had not recovered yet from last Fridays lung-suck or two, it was now the progressing (hate that word) cancer causing the discomfort. The fever had disappeared by Monday in any case.

Tuesday was my all-dayer at Moores Cancer Center. 7:15am arrival, 6:30pm departure. In between I had a total of 7 EKG’s, one ekg stripevery two hours, all required by the clinical trial. Passed with flying colors. Or at least there were lots of squiggles on the printout each time.

Yesterday I went downtown for another EKG and a echocardiogram. Never had one of those. I’d like to say I never want to have another, but I know there are more in my future. For those that are not echocardiogramknucklessure how an echocardiogram works, and I was one of them, picture the sonogram used by OB-docs on a pregnant patient. Sounds calm and innocent enough, right? Only instead of gently rolling the stylus over my belly, it was mashed into my upper ribcage for over 45 minutes. In this case picture a knuckle noogie of grand, and lengthy, proportions. But this was my last test before formally beginning my trial so I sucked it up.

So that led us to this morning and the first of my daily pill popping (not pooping). But today was a bit shorter, having ended at 5pm. However, instead of just another EKG every two hours, added to it were blood draws each time as well. Luckily they set up an IV Blood drawport so they didn’t have to stick me each time. Unfortunately it took two tries. Eh, small stuff and I’ve been poked so much in the past week, no big deal. And they are simply wonderful over there at UCSD Moores Cancer Center. Looking very forward to working with them. So a 2-hour appointment once a week for the next 3 weeks, and then it goes to every 3 weeks. My first scan will be in 6 weeks. I just know it will show fuzzies on the run.

Totally unrelated but part of my business as usual, many of you know that I volunteer weekly doing Get Well Card0001science experiments at a first grade class. I’ve missed a few sessions so when I got back, the teacher had had her students all write me get-well cards. I had to include one to end my blog. Awww….

So today begins a new chapter in my journey. I should say our journey since you are all coming along for the ride, right? I’ll try and make sure to keep the stomach churning roller coaster dips to a minimum.

Business as usual. Day at a time.

July 12, 2014 (Sat) – Barkeep, I’ll Have Me Another Four Bottles

bartender_5No, not whiskey. Or sarsaparilla for that matter. Hey, did you know sarsaparilla was spelled SARS-a-parilla? I’ve always (yes, I use this word all the time – not) pronounced it SASS-parilla. Yeah, you know you do too.

But as usual, I digress.You know what bottles I’m referring to, doncha? Yup. A little over two weeks after my drac-doc sucked out 2 1/2 liters (5 bottles) of fluid from around my lung, I hadn’t had enough punishment and I returned for another 4 bottles. I’ll spare you the pic since I got so much “yuk” grief the last time I included a photo with all of the bottles lined up. He warned me the first time that the fluid could return fairly quickly and he was right. My breathing, chest pressure and bloated feeling had returned big time and they rushed to get me in yesterday for another lung-suck. This time was not quite the slam dunk the first time was as they (he and his 2nd-cutest-person-in-the-room assistant) really had to work it to get things flowing. See, learned my lesson. 🙂

Thus, I am not recovering nearly as well as the last time when I powered down 4 pieces of pizza the night of the procedure. I think my lung is having growing pains trying to re-expand to its mostly regular size. Right now I feel like I have the flu and a couple of broken ribs. Obviously that is not the case but it’s the best description I can muster. I opted to postpone my monthly Zometa infusion yesterday afternoon because it would have just added one more variable into the mix I do not need this week.

OK, enough whining. Now to mostly good stuff. Emphasis on mostly.

Yesterday I finally received formal news that the lab that was testing my tissue sample, did indeed have enough to test, and a-teamconfirmed the T790M mutation. Thus, I do not need a poke in the back for another lung biopsy. Yea! I’ve already begun the battery of tests that will be necessary prior to my first pill popping day with AZD9291, now affectionately called the “A Team” per reader consensus. Thursday I started Glasseswith a vision test at Shiley Eye Center which involved dilating my eye. The picture shows me styling the disposable eye shades they give you because the sun is virtually blinding since your eyes can’t adjust when artificially dilated. Not a big fan of having things poked into my eye. Doubt if I could ever do contacts. Although after the very good results for the test, I may never have to worry about contacts.

After the eye test, I stylishly walked next door in my cool shades for the first of what I assume will be a zillion blood tests. Mr. Magoo 2Again, they need to get a baseline to monitor any potential changes to my chemical makeup from the medication. That was my first poke of the day. I drove home like Mr. Magoo with my regular sunglasses over these temp shades as the sun was very blinding.

Rested up a couple hours and then headed down to Sharp to get, yes, another blood test. This is my regular monthly poke. And of course UCSD (because of the trial) and Sharp cannot share results so it involves getting nailed twice. Of course.

After that I headed over to the Sharp MRI/CT office to get a full body kitty-scan for another trial baseline. This involved my 3rd Pokeypoke(y) of the day since they needed to do a contrast test.  If you remember from a prior post, this meant I was Rt Lung - C. Blower 7-10-14injected with some hot-flash inducing juice. I waited around to get a CD of the test although the written summary would not be available for 24 hours. I would flunk anatomy but the attached picture (prior to my lung-suck) seems to confirm the huge pool of fluid around my right lung. This is what triggered the emergency need for the thoracentisis.

Now some not-so-good news. The CT scans show “innumerable new bilateral pulmonary metastasis” meaning fuzzy has had lots of babies since my last test. Doubt if being off Tarceva for only a few days had much bearing on that. And what’s funny, if there is anything funny about this, is that this increase in cancer is called “progression.” Really? I thought words that began with “pro” should be good things. It should be called “congression.”

But I am on track to begin the trial this coming week pending any totally unforeseen hiccups. Thursday would be my first day popping the A Team. And the test results have been pretty good for those on this drug at other trials. And it works pretty quickly for those that it works for. Hope I am one of the 60-percenters and that these fuzzies get knocked on their ass in short order.

Kim saintI would be remiss if I didn’t acknowledge my wifey (the saint) who has been my rock in this whole journey. Yeah, she gave up her planned-a-month-in-advance golf game yesterday to attend my lung-suck. And anyone would say, of course she should. But that is just a microcosm of what she has sacrificed over the past year and 5 months. Remember “Left in the Lurch” post from a while back? Well, I can’t say I’ve been very good at keeping my word. She has been catering to my every whim without complaint. So if you know her personally, please help me get her out of the house for some Kim-time. She overwhelming deserves it.

So here is my schedule for the upcoming week:

Mon: work as usual
Tue: 10-12 hour day at Moores for a full battery of tests
Wed: Quick ECG
Thu: First day of A-Team popping. 10-12 hour day. They need to monitor me all day to be sure nothing drastic happens.

Somewhere in here they need to squeeze in a echocardiogram. That’s the last piece of the puzzle.

Most likely you will not hear from me until the end of the week after I get through the schedule above. Wish me luck.

Business as usual. Day at a time.

July 7, 2014 (Mon) – Time to Say Goodbye

soundof-farewellconcertSo long, farewell, auf Wiedersehen, goodbye. We all knew this day would come, so it is time to bid adieu.

To Tarceva.

What, you thought I was referring to something else? OK, so I’m a bit inseBye byensitive. But I get a lot of slack these days. As of earlier this morning, at approximately 2:47am, I dropped my last Tarceva pill. I had flirted with the idea of playing off a memorial theme for Tarceva’s last day. But that really would not have been appropriate. And in actuality, Tarceva has been an extremely good friend for over a year; but sometimes you just gotta let go. So this is more like a farewell party to a bud who is leaving town for far away places, never to be seen again. But he (sorry, I know it’s not PC but I just don’t see Tarceva in a feminine role) is not going to leave me high and dry. His cousin, with the cutesy name of AZD9291, will be getting the tag-off from Mr T. before he leaves town.

So wTarceva stophy is the plug getting pulled on my 150mg, $200 per pill buddy? Weeeelll, in order to begin the new trial at UCSD, I have to be “purged” off Tarceva for 8 days. Even though the lab may not have the final results until the end of the week, the lung-onc specialist at UCSD does not want to waste another week on what should be a foregone conclusion. “Should be” being the operative phrase. Assuming the labs has enough tissue and assuming they confirm the T790M mutation by Friday, I should be popping my new buddy come next Wednesday the 16th. Let’s hope “assume” does not make an ass out of you and me. Or really, just me since you had nothing to do with it. Feels a little like diving off the high dive hoping there will be water in the pool by the time I reach it.

Drag race lightsAfter I’ve waited all of this time, UCSD is now “fast-tracking” me so I can get off the dime. Get the show on the road. Put the pedal to the metal. What this means is that sometime in the next week I will be going through a battery of tests, one day of which will require a 10-hour stint spent doing multiple tests, waiting several hours, and testing again. And like it says on the shampoo bottle, lather-rinse-repeat again. I will also be getting a series of CT (kitty-kat) scans this week so they have a baseline to compare to down the road when the AZD9291 starts working its magic. Notice I said when.

Topic switch: look what I got in the mail today. As much as I would like to do my civic duty, I donJury Duty‘t think that I have the time, or the inclination, right now for listening to someone sue someone for cutting an overhanging branch on their property. Anyone think of a good excuse I can use for getting out of it? Oh yeah, I have one. Duh.

Not hungryI know I will get very little sympathy here but lately I find that I have to actually force myself to eat. I know I need to keep up my strength, but I have zero appetite and in many cases I actually have to make myself chow down something that I would ordinarily be powering down multiple helpings of. I mean, free pizza was dangled in front of me this afternoon and I had zero slices. Repeat: zero. A very weird feeling. Lost 10 pounds overall and don’t want to lose many more. Except soon I may be fitting into my 34’s that I haven’t worn in 6 years.

Audience participation time. Since AZD9291 is in clinical trial and not on the market, it does not have a trade, or cute, name. I don’t want to keep referring to it by that number so how about something like “Azzy” or “Azid?” Anyone have any other suggestions? Hey, when I write that book you all keep telling me I should write, you’ll be famous.

I imagine I’ll be blogging again within the week with more specific updates. Stay tuned.

Business as usual. Day at a time.

June 26, 2014 (Thurs) – Dracula’s Got Nothing on my Doc

DraculaYou know by now I’m not going to dive right in and explain the title to my blog. A good author never gives everything away up front – otherwise the reader will not hang on to every choice morsel to see where this all goes, right? I suppose you could call my lung tissue sample a “choice morsel” but that’s not really what I am referring to. But before we go down that path, let’s check in with what has transpired in the past several days.

This past Monday I had an appointment with the lung-onc specialist at UCSD Moores Cancer Center. Of course, that appointment was predicated on UCSD being certified for the AZD9291 trial by then. Otherwise, there would be no reason, necessarily, for my insurance carrier to cover me for an appointment with a doc Moores Cancer Center Moores buildingoutside of my group (Sharp Rees). So, come Monday there still was no word as to whether insurance would cover my visit scheduled at 3pm. If I kept the appointment and was not covered, the visit would probably be $200-300 out of pocket. I could wait a couple days until all the red tape was taken care of but I had grown increasingly short of breath and fatigued.

Now, one of the criteria for getting into the trial was that the patient had to have at least a 90-day life expectancy left. Based on the speed of the progression of my breathing challenges, I was very concerned that I would even make it that far. So without getting a final word, I opted to keep the appointment and take my chances. As soon as I got there the lady in charge of the clinical trial told me that she had just gotten word from the insurance carrier that my visit would be covered after all.  Actually I believe she talked them into it. UCSD has been wonderful. Did I say that already?

The main lung-onc who would oversee my treatment if I got into the trial came in and I explained my physical concerns. She asked me when Pleural effusionthe last CT scan was I had and I told her it was in the ER that Monday of the week of my daughter’s wedding. Remember that top-secret visit a month ago? She asked if I could get the CD of that test and get it to her ASAP. She suspected that I was suffering from pleural effusion, aka, fluid buildup around my lung. But she wanted to see the test before she commented further. So at the end of the appointment, I rushed off to Sharp Hospital Radiology Dept before they closed to try and get that CD. I was well prepared to beg, bribe and otherwise plead near-death in order to get that CD. That’s how bad I was feeling. Yet, when I got there, the guy at the desk asked me what I wanted, I relayed my request without any drama, and he had it ready in 10 minutes. I was again blown away. Kudos to Sharp Radiology.Kudos

The next morning (this past Tuesday) my wife did me the favor of driving the CD over to UCSD first thing in the morning and dropping it off for the lung-onc. More kudos are in order for the doc as I got a call within the hour. She had reviewed the CT scan results and said it appeared I had a “large” pleural effusion, that if drained off, should offer some relief. You might certainly ask why the ER doc hadn’t pointed that out to me a month earlier, but I was so worried about missing my daughter’s wedding at the time, I was only interested in getting a hall pass for the wedding, which I got. Debating the lack of a warning from the ER-doc about possible problems coming up is something that is still on the agenda. Right now, I have bigger fish to fry.

thoracentesisSo hoops were jumped through from doc-to-doc-to-doc and I got scheduled for a thoracentisis (fluid draining) yesterday (Wed) morning at 8:30. Got a quick x-ray first to see where the mass was more exactly, followed by a sonogram to determine the best location for the jab. Yeah, another stick in the back, but this time it was not into the lung, just to the layer outside it. Much less invasive. The lung-doc, who I had never met, came in to explain the procedure and discuss exactly what to expect. More kudos. There were no surprises. Well, almost none. Wink, wink. But he brought in his in-training, cute physician’s assistant to help. Wait, did I just type that out loud? Uh, but she was only the 2nd cutest in the room, my wife, of course, being the cutest.

Good save?

The doc had explained to me that he had sometimes drained off up 2-3 bottles (1/2 liter each) of fluid from prior patients. When I saw the 500ml bottles I thought that hard to believe as I couldn’t imagine that much fluid inside someone. You know where this is going, right? I don’t do anything halfway. So here is what he sucked out of me, and he finally had to stop at 5 bottles for fear Fluid drawmy lung would react adversely to having all that nice, warm comforting fluid surrounding it sucked away. Click on the picture for the full effect. So he left about 1/2 bottle (250ml) in me. Wouldn’t want to drain me completely dry, eh? Not a big issue but something to watch for down the road if I began experiencing that uncomfortable feeling again. The slight red tint is from a miniscule amount of blood that came with it, kinda like how a drop of red food coloring would discolor a big glass of water. If this fluid had been gasoline, and that doesn’t bring to mind a comforting feeling, I’d have enough to get me about 20 miles in my Camry Hybrid. The typical reaction when I showed a  few people this picture, and the same reaction I had: Holy shit! I don’t typically swear in this blog but that is really the only way to describe it. Probably exactly your reaction when you saw this picture, especially if you clicked on it for the XL version.

Dropped about 6 pounds in 10 minutes. But don’t try this at home. Explains why I wasn’t losing weight even though I was not eating very well. Asked my lung-doc if I was OK to go to work and he said it was entirely up to me. But after draining off 2500 ml of fluid, of course I would go home and rest up, right? Of course not; you know me. Off to work I went. Business as usual, right? I could have sworn I heard my wife say under her breath, yeah, stupid as usual. Well, she may have just thought it as she is always looking out for me and feels I push this business as usual agenda a bit too far. She’s right. But I’m not willing to cut back yet. Besides, after having 2/3 of a gallon of juice removed from my chest cavity, I feel a whole lot better. Even recovered my appetite somewhat having powered down 3 (4?) pieces of pizza and two beers last night. OK, I did say somewhat recovered.

As for the trial, certification for UCSD to run the trial is imminent, perhaps tomorrow. Once that happens, I go in to sign my life away with every legal disclaimer known to man, and then they send off my tissue sample to the lab to see if 1) there is enough to do the test and 2) confirm that I am T790M positive. If for some reason there is not enough tissue, there is another possible option to create a tissue block reduced from all of the fluid samples above. I have a feeling they have enough of that. Ya think?

So after the lab confirms everything, I can formally begin the trial. The first day would be a full one with every scan in the books, along with an ophthalmology exam. Not sure the purpose for that but hey, the eyes have it. Overall we are still looking at 2-3 weeks. But now that the severe breathing difficulties are past me (at least for the time being), the sense of urgency isn’t quite what it was. I am now confident I should easily meet that 90 day criteria mentioned earlier. 🙂

So, since this is pretty much a clinical blog today and you have already been grossed out by the bottle-pic above, here is another Arm woundone to chew on. Oh, that was gross. Is this a picture of flesh eating bacteria or some horrible side effect of the medicines I’ve been taking? Nah. This is a result of my last softball game, having taken yet another bad hop off my right arm. Screw the cancer. Based on my last two blogs and bad-hop softball injury stories, softball will kill me. I think my skin must be thinned out from the medication as a big patch was just ripped back by the ball. Or else I’m just getting the old-age, thin-skin syndrome. Say it ain’t so!….And I was 0-for-4 at the plate. But hey, I was carrying around 6 extra pounds of baggage. That’s my excuse and I’m sticking to it.gas-X

Finally, got a stock tip for you: Novartis. Why? Are they developing a new cutting edge cancer fighting drug? Nah, they make Gas-X. I think I am personally responsible for a 10 point rise in their stock price. No further details are forthcoming even if this is a clinical blog. Doesn’t take too much imagination.

OK, time to wrap up. Stay tuned as I get more updates on the trial.

Business as usual. Day at a time.

June 19, 2014 (Thurs) – A Man, a Bear, and an Anteater Walk into a Bar…

Sure sounds like a lead-in into a joke. And it could very well be. Just not in this case. And the bar? After the past few weeks, that is where you might have expected to see me tossing down a few tall ones. If I were a drinking man. Oh yeah. I am. Well, here’s what could driving me down that path:

Up until last Friday, I understood my options to be: 1) A clinical trial at UCLA (if T790M mutation detected in my tissue sample); 2) Clinical trial at UCSD (if C-Met mutation); or 3) chemo therapy if neither came back positive. We already knew that it came back as T790M positive so we were just waiting to see if by any chance it also came back hitting the plus sign on C-Met. I finally got an e-mail from my onc-docconfused sign last Friday morning who told me that the lab came back with a big negatory on the C-Met. So I’m off to UCLA, right? Think again. Remember that Pachinko machine? Ping-Ping-Ping. No, the rest of his e-mail indicated I now had two options: A trial up at UC Irvine (same as the UCLA one apparently) or 2) waiting for a new T790M trial in UCSD (more specifically AZD9291) that was to begin in about 6-8 weeks. And essentially I was asked what I wanted to do.

So I could begin commuting to UCLA or sit on my butt for 8 weeks waiting3 guys for the SD trial, all the while Fuzzy is having his way with me. Oh, but I could begin some chemo-therapy in the meantime to tide me over. Not liking the options presented, I asked my onc-doc to call me so we could chat. So he calls in the afternoon and said after talking with the lung-onc specialist at UCSD, it turns out that they had expedited the application and would be starting the trial in next couple of weeks. OK, that pretty much narrowed down my choices.

Well, despite the bouncing around, after all was said and done, it looked like I was going to end up with the best option.

Looks can be deceiving. Well, that’s not fair because, right now, it appears I will be headed to UCSD. And yet, you know that is not the end of the story, right?

Cancer lungRemember the tissue sample issue? That the idea was to have enough tissue to do both tests? And that is exactly what was done. End of story, right? Positive for one, negative for the other. The fact that it took a month is a whole other tissue-issue. Ah, now we enter the realm of clinical trials. The drug companies are very picky about how their trials are run. They want to keep the variables at a minimum and, before they spend a bunch of money on potential patient candidates, they want to confirm the specific piece of data that would make someone eligible for the trial. In this case, having a positive test for the T790M mutation. I bet you have an idea where this is headed, don’t you?

The clinical trial, and this would apply to any clinical trial, needs to do their own tissue sample test to confirm the evidence of the mutation. In other words, they cannot accept the results of the lab that already provided that test result. So this begs the question as to why we did the test in the first place if it would have to to be repeated for any possible clinical trial. Very good question, or so the lady running the trial at UCSD told me. Unfortunately my question was never really answered to my complete understanding.

Bottom line is, they need to test a new sample of tissue from my lung. Last I heard, there was not enough tissue left to do a tesbeert which would necessitate, yes, wait for it….., another biopsy. And an additional 2+ weeks to schedule and get confirming test results. Ergo my desire to power down a few barrels of suds. Not sure even Rombauer could soothe my frazzled psyche at this stage.

But now the latest word from UCSD, and they have been awesome in staying in constant touch with updates, is that there may be, possibly, perhaps, perchance, enough tissue left to preclude another biopsy. It all comes down to how much the trial people require in terms of a tissue sample. I am supposed to hear back by the end of the day tomorrow, Friday, as to that determination. Stay tuned.

In errorthe meantime, I have to admit that I can feel the effects of the fuzzy encroachment on my lungs. When you get winded leaning over to tie your shoes, you know somethin’ ain’t right. Tried to play softball this past week and I’m guessing my teammates maybe wished I had remained a cheerleader after a missed play and an error resulted in a 7-run inning by the bad guys. But I am paying for it with a large lump on my shin where the afore-mentioned error ricocheted. Hey, I did get a base hit and it only took me 5 minutes to recover from the run down to first. I have to admit I now get very jealous when I see joggers, even though I was never really an exercise-enjoying dude, unless I was playing something. I miss feeling like I was in some semblance of shape. Never an elevator guy at work, I now find myself taking it to go two floors. Pretty sad.

So this trial involves replacing my current daily Tarceva with a new drug AZD9291 (you clinical types can click here for some additional info). And no, placebos are not allowed in a trial of this nature so I will be getting the real deal. It shows promise but that’s why they call it a trial. I’m just anxious to begin fighting back. Then again, the trial requires a certain size lesion that has not been previously biopsied so who knows if I will pass muster or not. Told you the trial types were picky. Should know fairly quickly. Uh huh. I know, you’ve heard that before.

kfcUnfortunately part of the recent fuzzy progression has resulted in a loss of appetite. I’m not shedding tons of weight but I am really having to force myself to eat and have slowed down the weight loss a bit. Tonight when my wife was out at a dinner party, I did something I have not done in at least 3 years. Figuring I need to gain some weight, and being the healthy kind of guy I am, I opted for a rare indulgence: KFC. Heck, what’s it gonna do? Kill me? OK, that was a bit of sick humor. In the old days it was known as Kentucky Fried Chicken, just like Pops cereal used to be called Sugar Pops and Frosted Flakes were Sugar Frosted Flakes. What’s in a name, eh? Back then I could easily have powered down a 5-piece meal deal. Tonight I couldn’t finish a 3-piece version. You know I’m sick when I can’t finish my fried chicken. My sibs will attest to that. Heck, I have lunch for tomorrow I guess.

OK, I’ve run long enough and I’m getting winded typing. All right, it’s not that bad. But I suspect I’ll be posting a new update in the near future in any case. We meet with the lung-onc specialist on Monday to lay out a game plan.

Business as usual. Day at a time.

June 10, 2014 (Tues) – And the answer is…

confused 2Well, not really sure.

If you’ve been following my blog (of course you have), you’re probably not overly surprised at that statement.

I was trying to hold off until I had all of the data and knew where I was headed next but I couldn’t wait any longer.  I was starting to get queries as to my status so I figured I may as well give you the latest update, albeit, incomplete. Love that word, albeit. I keep wanting to pronounce it “all-BAIT” which has garnered some guffaws (another fun word) when I did indeed slip my tongue. Hey, I’m all about generating some laughs at my expense. Why not?

Finally had my appointment with my uncle-doc last Friday, the day he promised me results of my biopsy. Then again, if I wasBiopsy result a wagering man, I would have put money on not getting the update, especially since it was not really in his control, but the lab’s purview tucked away in some corner of the country. Now I might have a discussion with my bookie if either he or I tried to collect on that wager. That is because I got a partial result.

So, way back in ’74, I applied to UCLA for grad school. I was accepted but opted to postpone my advanced degree, instead choosing to enhance my education by driving a Coca Cola delivery truck, moving to Salt Lake City, and rooming with 3 girls in a 4-bedroom apartment. My wife already knows this, and it was 40 years ago, so hopefully I’m not getting into any hotter water than I am. Never did go back for that degree. If you know me personally, feel free to ask me to explain in person. I’ll not digress any further in this venue. Squirrel!

UCLA logoBack to UCLA, I may end up being a Bruin after all, at least an honorary one, in the near future. Yes, apparently I did test positive for the T790M mutation which would align with the clinical trial up at UCLA. I’m still awaiting word on further tests, such as the C-Met mutation, before any there is any action-Jackson. I may be be blogging again tomorrow for all I know with updated info. You never know with my situation, right?

So, a couple of weeks ago, while waiting for my biopsy results, I thought I would be extra romantic as my wife has been such a champ in holding down the Blower family fort. So I impulsively texted her:Love to death

OK, let’s just say I did not think through my choice of words too carefully. I thought I was being really romantic, and she was sure I was making reference to some really bad test results that I didn’t want to tell her about. I’d like to say this was the first time I knuckle-headed an attempt at romanticism, but ask me some day about a Valentine’s Day long ago where I left my wife in a puddle of tears on the floor because I carried a prank way too far. Some people never learn. The fact that she is still married to me sometimes amazes me. OK, always amazes me.

Saw a re-occurrence of my chest discomfort this past weekend which prevented me from sleeping on my bed because it was too difficult to lay flat. Also opted to be cheerleader/scorekeeper at my softball game as I didn’t want to push my luck. “Got” to sleep another few days on my new recliner. I must say, it was a decent night’s sleep. Finally yesterday I was able to return to my bed. And right now I am planning on coming off the DL for our Sunday Father’s Day softball game. But we know how things change, don’t we?

Still coming down off the high of my daughter’s wedding. Can’t wait to get some of the formal pics to post. As many of you know, at least those of you on Facebook, the father-daughter dance was “Happy” from Pharell Williams.  Very fun!

OK, another blog should be coming in the near future with an actual game plan. And I have a bridge to sell you…

Business as usual. Day at a time.

June 2, 2014 (Mon) – The Wheels on the Bus Go …..

…round and round.school-bus

Or flat. Or they come off entirely. Or someone gets thrown under the whole kit and caboodle. I was just waiting for an opportunity to use that phrase which, unless you are at least 50+, probably have no idea what I’m talking about. Then again, I’m not sure I understand its origin. But suffice it to say, all of the above have happened in the past couple of weeks. But when the wheels go round and round, they’ve been mostly spinning in place a la a speed odometer testing track.

stabbed in backSo last you heard from me, I was waiting to get stabbed in the back. Couldn’t find a decent clip art for an actual lung biopsy that wasn’t too graphic for prime-time so you will have to live with the non-pc knifing version to the left. My lung biopsy went without hitch on Friday the 16th. That was after one of the technicians finally found me because the computer apparently had me located in a whole different side of the hospital. But I’m so glad it wasn’t on the 13th again. That date has not worked well for me. And I’m also glad I was not one of the ten-percenters that suffered a lung collapse during the procedure which would have put me in overnight. As it was, it was an all-day ordeal having to wait 3-4 hours afterwards to ensure no lung leakage. hsssss… Originally I was told I should expect about a week before my test results, hopefully indicating which of the two clinical trials I might be eligible for. Remember that time frame.

Because I am working with two separate medical facilities, Sharp, my home club, and UCSD, a possible site if indeed I test positive for the C-Met mutation, it gets a little tricky in terms of insurance, permissions and access to test materials and results. In order for them to have sufficient lung tissue samples that Sharp can send out for one mutation test, and UCSD can get a piece of me to send to their lab, Sharp had to conduct the biopsy. So my onc-doc at Sharp was the one who scheduled the procedure. Otherwise it would have taken a double-stab. And I won’t subject you to that graphic.

On Thursday, the day before the biopsy, I e-mailed my onc-doc at UCSD to let her know that my biopsy was scheduled for the next day. On the following Tuesday, I received a call from her assistant reminding me to let them know when my biopsy got scheduled. Deja vu all over again. I quickly straightened her out and proceeded to enlist my patience in waiting for the test results which I expected to receive by that Friday (the 23rd).

I know you are not going to believe this, but I did not hear by that Friday. Yeah, floored me as well. Not. So I e-mailed my Sharp onc-doc over that weekend as a reminder to let me know about the biopsy test results. I knew that Monday was a holiday and I would probably not hear from him but at least he would have the e-mail when he first got in on Tuesday. And I had my regular monthly appointment with him that Wednesday the 28th.

On Sunday the 25th, my wife left for San Jose (driving) to help out out with my daughter’s wedding preparation. chest_painAnd to take up all of my daughter’s stuff accumulated over the years now that she was officially hitched. The wedding was last Friday. More on that later. But overnight on that Sunday, I began to feel more uncomfortable and short of breath as the evening progressed. When I woke up on Monday (Memorial Day), I added sharp chest pains to that mix. So, what would you expect a lung cancer patient, with increased difficulty breathing, with sharp chest pains, to do, especially with nobody home? Call a neighbor? Call 911? Drive immediately to the ER? Nah. I went to work. Hey, it’s budget season and I had important stuff to do.

head-in-sandI was trying to keep my head in the sand because I did not want to know about anything that might preclude my being at my daughter’s wedding last Friday. It took about 4 hours for smarts to catch up with me. As I was leaving work at noon, I Googled “lung collapse symptoms.” Yup, I had every single one. And I was a bit worried that this is what I was facing, especially after having a partial collapse to begin my whole journey with over a year ago. And I knew waiting another 5 days, if that’s what it was, would not be a good thing. So I stopped by the ER on my way home.

hospital5This time I was flooded with service and attention. Too much attention. They tried to suck my blood 4 separate times, when they actually only had to do it twice. I had to send them away, otherwise I would have I run a pint dry. But two blood tests, an EKG, a chest X-ray, and CAT scan later, I was in and out of there in only two hours with a clean bill of health. OK, we know that is not true but they did indicate that there was no evidence of lung collapse or any other issue that would preclude my travel north. Thus I knew I was not going to tell my wife or daughter about my little ER stopover until at least after the wedding.  That is not something they needed to worry about that week. In fact, this post is probably the first my daughter has even heard about it unless my wife has spoken to her. I did end up sleeping on the recliner in the den that week since lying flat exacerbated (that word just sounds nasty) the problem. Since then I’ve been able to sleep flat and the symptoms have subsided somewhat.

OK, back to that week of my onc-doc visit. I called him the Tuesday morning after my ER visit to remind him about getting the biopsy results and to let him know that I had been in the ER the day before. Of course I had to leave a message as he was with a patient. And of course Tuesday is his half-day so, as you can now imagine, I did not hear from him.

When we finally got together Wednesday for our regular visit, I politely, well maybe not totally politely, unloaded on him about my disappointment in communicating with his patients. He apologized profusely but also indicated that he did not get my voice mail message although I had dictated it to his assistant who I heard typing it. Right or wrong, she is now squashed under that bus up above.

Test resultsAs for the biopsy results, apparently there are only two labs in the US (copyright and profit issues) that do the specific type of test (T790M) and one of them required too much of the tissue sample which would have meant I was in for a double stabbing. Since he guessed that I would not be overly enthused about that option, they went with the other lab that required less tissue and that would leave enough of my bod for the UCSD lab to have. But, these lab tests are being done to determine my eligibility for “experimental” clinical trials, thus insurance coverage was not a slam dunk. Apparently it took quite a few days to get all of the red tape covered to ensure I was not going to get stuck with the $26K cost per lab test. I was appreciative of that, just not the lack in communication in telling me that there was going to be a delay, and why. But I think we are finally clear on my expectations on keeping me informed. We shall see as I am supposed to know something by the end of this week. If I do not get a call by close of business on Friday, I’m gonna be pissed. That will be two weeks since my biopsy, 4 weeks since I got the word about my PET scan results, and 5+ weeks since the PET scan itself. In the meantime the fuzzies are feasting, at least in my eyes.

20140530_173756P1030543But I can’t finish my post on such a less-than-positive note. Last Friday my only daughter got married. Now that was some party. Probably the best wedding (not counting ours, wifey), I’ve ever been to. Classy but tons of fun. Here are a couple shots.

Business as usual. Day at a time.

May 14, 2014 (Wed) – Geezer Mutant Ninja Hurdles

TurtleWow, was that a stretch. I agree.

But once I have an idea in my head I force it to fit. And God knows I ain’t no teenager. So, do I look ready to do battle? I guess that’s the idea. I’ve had it relatively easy for 15 months. Emphasis on relatively.  Phase II coming up, yet still to be determined. But it will be a tougher battle (hurdle) whatever the path I take.

So my wife and I met with the lung-onc specialist Monday to determine the next step in this journey. She confirmed that the first step would be to do another biopsy of fuzzy so that they can get the tissue testedDiagram for whatever mutation has caused it to become resistant to the Tarceva I’ve been taking. And depending on those results, I essentially have 4 directions I could head. Here is a simplified diagram that my doctor drew up that makes it more understandable:

Thus, there is a 50% chance I will test positive for the T790M mutation which would mean I’d be eligible for a UCLA clinical trial. There’s a 30% chance I’ll test for the C-Met mutation which would mean I’d stay in SD for the clinical trial. In 20% of the cases, neither of these would test out and they don’t know why. That would mean I’d begin a regimen of regular chemo-therapy. On the slim chance (4%) that this comes back having mutated to Small Cell Lung Cancer (currently I am Non-Small-Cell), then I would begin a different chemo therapy. And SCLC ain’t a good thing, not that NSCLC is good. But that is the last option I would want to have happen. Ergo the sad face. And yes, for you math nerds (like me) I know the total is 104%. But that is how the diagram was drawn for me.

So I am on pins and needles awaiting my biopsy which will be performed this Friday morning. That was a very poor pun since a hollow needle will be used for the tissue extraction, otherwise known as a core biopsy. Same as the one I had more than a year ago when I began this journey. Sorry if you just finished your dinner…Forgot the TMI warning. I was going to use a picture but that would indeed be over the top. I’m sure you can use your imagination.

finger in dikeMost likely I will remain on Tarceva for the time being because there is no way to know if it is still offering some benefit. No sense pulling the finger out of the dike if it is just leaking. Certainly OK by me. Don’t need to open the flood gates to fuzzy.

All that said, the doc made us feel a a bit more at ease in terms of the urgency level we are looking at. With our daughter’s wedding two weeks from Friday, I didn’t want to have to carry a barf bag with me down the aisle. By the time the tissue sample is read in the lab (about 5 days after the biopsy), it would only be another week before the wedding. She said, very confidently, that there is no concern about waiting until the week after the wedding before beginning whatever treatment is in store. Whew. I feel a whole lot better. Of course I would have had a built-in excuse for my lousy dancing which I will now have no explanation for. Eh, trade-offs.

So I sit here typing this more-clinical-than-usual blog while surrounded by boxes of “stuff” and duffel bags filled with more stuff. San Diego was hit with 8+ fires today that started with the 100 degree weather and high winds. There were two small fires firenearby that were quickly handled. Thank you firefighters! But all of us in this community are a bit skittish after the two fires in 2003 (330 homes in our neighborhood destroyed) and 2007 which caused us to evacuate. So we have our stuff ready to load up in the car. Hopefully the cooler weather predicted for the weekend will knock down the risk a bunch.

So, next news will probably be in a week or so with results of the biopsy. Stay tuned.

Business as usual. Day at a time.

May 10, 2014 (Sat) – Who’s on First?

abbott_costelloAbbott and Costello would have been proud. This past week and a half have been, shall we say, interesting. If you look up “miscommunication” in the dictionary (OK, Google – when was the last time you looked at an encyclopedia, if you even know what one is?), you’d see a picture of two doctor’s offices, along with moi, trying to put something together that should have been very easy. Especially in this day and age of e-mail, voice mail, cell phones, yadda yadda. Shoulda used a carrier pigeon – it might have been quicker and more straight forward.

So in summary format, here, day by day, is how it went down:

Wednesday (April 30): Had my PET scan in the morning. They said my onc-doc should call within 24 hours.
Thursday (May 1st): Per my uncle-docs’s earlier request, I called him to remind him to review my scan. Not sure why that would be up to me but hey, whatever speeds things along. Had to leave a message after being on hold 5 minutes. Later that afternoon, about 5:30 or so, as you know, I got his not-so-happy-news call at that restaurant. He said he would set up a consult with the lung cancer specialist (I shall now call “lung-onc”) at UCSD Moores Cancer Center. The plan was that her office would call me to schedule an appointment. Or so I understood.
Friday (May 2nd): Based on prior experience, I honestly did not expect to hear from them on this day. And my expectations were met.
Saturday (May 3rd): Worry, fret, worry, fret…
Sunday (May 4th): Breath of Hope Walk – awesome support for Team Craig – Get Fuzzyhesaidshesaid
Monday (May 5th): Called the clinical trial lady at the lung-onc’s office at UCSD to check on the status of my appointment. She said that the two docs had spoken and she thought that they had indicated that another biopsy would be in order first, before I met with the lung-onc. She said I should hear from my regular onc-doc’s office to schedule that biopsy. Can you say “ping-pong?”
Tuesday (May 6th): I called my onc-doc’s office late in the morning, and after 10 minutes on hold (somewhat common for that office), the nurse came on the line. Of course my onc-doc was out for the rest of the day. She said she had nothing in her records about scheduling a biopsy. She indicated that she would text my onc-doc to see what was up. She later called and said he texted back indicating that he knew nothing abouWahtdoyouthinkt a biopsy. He said he would get in touch with the lung-onc specialist to work things out.
Wednesday (May 7th): Got a call from the onc-doc’s nurse saying that the two docs still hadn’t spoken, that they were waiting for the lung-onc to call them. She said she’d call me back that afternoon. I did not hear back from her by 4:30 so I called again and she said they still had not heard anything. She’d get right on the phone and call me shortly, or worst case, the next morning. Guess which it turned out to be? Duh.
Thursday (May 8th): Got a call from the onc-doc’s nurse who said they (the two onc’s) had agreed that I should see the lung-onc specialist first and that I should expect a call to set up that appointment. Can you say “deja vu?” That is exactly where I was a week before. So of course I did not hear back on Thursday. Another Gomer Pyle surprise-surprise. Not.
Friday (May 9th): I called the lung-onc’s office to see about the appointment and the person I spoke to initially Hot Potatosaid she didn’t see anything in the file about scheduling an appointment. Why was I not surprised? As she dug deeper, she saw that there was a note about setting up an appointment and yes, she could do that for me. Initially she wanted to schedule it a week and a half away and I told her that was not acceptable, that I had waited over a week and nothing had been done. So she finally got me scheduled for this Wednesday.

However, that was not the end of the story. My wife called me right after I got off the phone to say that there was a message on our answering machine from someone else at UCSD (yes, we still have an answering machine, along with our land-line) that said I was scheduled to see the lung-onc on Monday morning.

Don’t get me wrong. I feel that I have had excellent quality of care over these past 15 months or so. My onc-doc is a great guy, even though there have been a misdiagnosis or two (remember my arthritic hip?). And the lung cancer specialist is the expert in town. But trying to get the two of them on the phone at the same time is next to impossible, apparently. And the support staff are seemingly, OK obviously,  not always in the loop. If I hadn’t taken the initiative (several times), I could virtually guarantee you that I still would not have an appointment. Now, I realize that communication where I work is always 100% accurate and timely. OK, you can quit laughing Kris and Wendy. So I really am not in a position to throw stones. And yet we’re talking a delay in whatever treatment is next on the agenda. And as the patient, knowing the Tarceva has probably run its course, I feel like a sitting duck. And of course, now that I know something is brewing in my chest, I have started to feel some discomfort there. Power of suggestion or ??

In the meantime big fuzzy-wuzzy is having a litter in my chest, and who knows elsewhere. In my head I envision a bunch of pacman-type creatures gobbling their way through my upper reaches, with no ghosts to interfere with their progress. All the while I wait a week for news of an appointment that will only (hopefully) provide the options available to me. But no active treatment yet, other then the Tarceva, which may or may not be doing any good at this stage. Obviously Tarceva is not the super hero it once was. But we knew it would lose its super powers over time and I am not dissing it. Mr. T has allowed me to live a fairly normal life for the past year+; a fact I am eternally grateful for.

So that is where I stand. I am meeting with the lung cancer specialist at Moores late Monday morning. Hopefully after that meeting we will have a game-plan in place so we can begin picking these buggers off. Did I just say pick and buggers in the same sentence? Sorry ’bout that.

Although we will have to wait for the official word, my guess is that there are several possible options. A biopsy may be ordered to see if Mr. Fuzzy has changed (mutated) or still has the same composition that the first biopsy a year ago determined. If it has changed, perhaps there are other drugs that might offer some benefit. Or there may be a clinical trial that I am eligible for. If not, chemotherapy may be next on the menu. Stay tuned.

Team PhotoAnd although many of you are probably sick of seeing yet again, one more Team Craig – Get Fuzzy photo,  for those not on Facebook, I need to add a final chapter to that wonderful event. We by far had the most participants (over 60) of any team and we came in 2nd in the amount of funds raised. Not too shabby. Over $100,000 was raised by all of the teams for the Moores Cancer Center in support of lung cancer research. Fair warning, I’ll be hitting you all up again a year from now. 🙂

Business as usual. Day at a time.

May 2, 2014 (Fri) – Surprise, Surprise, Surprise

No cutesy cartoons of Jim Nabors (Gomer Pyle) to accompany this title. Because, unfortunately, the title is referring to news that is not at all humorous and I did not want to make light of a serious turn of events.

Got that call late yesterday afternoon from my onc-doc that I have been anticipating/fretting over regarding the results of Wednesday’s PET scan. Of course, I was somewhere, as before, where the noise was not very conducive to having a conversation. But this time I was able to move to a quieter area. Not sure I wanted to hear what he had to say as I was concerned that the hip discomfort that has been nagging me was a sign of things not-so-friendly coming back.

So the good news is that my hip is not showing any significant change. The bad news is that fuzzy has returned to, not one, but both lungs now, with multiple metastasis (mets). OK, that was a big surprise. I was thinking that at worst case, it might come back at my hip and we would be able to zap it again. ‘Fraid that is no longer an option and the Tarceva benefit seems to have run its course.

So where to from here? Good question. My onc is getting me an out-of-group referral to the lung cancer specialist at Moores Cancer Center. There may be a clinical trial available to me for some alternative treatment. If not, then most likely I will need to begin chemotherapy fairly soon. Of course, just before my daughter’s wedding at the end of the month. Shoulda taken the wedding photos before. Well, my daughter is a Photoshop guru so maybe she can work some magic if it is needed. Otherwise I just might be styling with that beret I modeled in a much earlier blog.

I will keep this blog short as that is about all of the news I have. Obviously I will update it once I have more of a game-plan in place.

And once more, and finally, thanks again to all of you that have supported this Sunday’s Breath of Hope walk. That support is appreciated today more than ever before, and the fact that it is benefiting Moores Cancer Center is even more apropos at this stage. I’ll see a bunch of you Sunday morning.

Business as usual (well, not really). Day at a time (for sure).