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.

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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.