October 20, 2014 (Mon) – Lovely Blog Award Nomination

lovely-blogI was recently nominated for a “Lovely Blog Award” by a fellow blogger, somekernelsoftruth. Thank you!

I wasn’t quite sure what to make of it as I had never heard of this award. Initially it looked like one of those chain blogs where you feel obligated to forward on to 15 friends and so on. Kinda the Amway methodology. Apologies to any of you selling Amway. It’s sorta like the ice bucket challenge yet with no obligation or pressure to donate dollars to anything or risk pneumonia.

But the more I looked into it, the more I realized that it was more of just a method of acknowledging fellow bloggers who you read and respect and to share those links so others who read your blog can expand their horizons. I feel little risk of losing my readership as I know you will still like my blog best, right? Uh, I said right. This is where you jump in and say RIGHT!

OK, now I heard you.

There are a few simple rules to follow to accept this nomination:

  • Thank the person who nominated you for the award.
  • Add the One Lovely Blog logo to your post.
  • Share 7 facts/or things about yourself.
  • Nominate 15 bloggers you admire and inform nominees by commenting on their blog.

OK, #1 and 2 are done. That was the easy part. As for 7 facts, preferably things you may not know, that is a bit more difficult. Since I have been a very open book for the past 20 months, I’m not sure there is anything you don’t already know, but here goes:

  1. I actually did try my hand at Amway about 20 years ago. I was totally fed up with my job at the time and considered anything that would get me out of that place. However, I stunk and just could not get into the program and bailed pretty quickly. Most do. But I consider everything a memory, good or bad.
  2. Coca Cola truckI drove a Coca Cola delivery truck right after graduating with my BA in Economics from UCSB. Didn’t know what I wanted to do with my life so I decided to just take it easy for a while and just make some money. My mom was not a happy camper though. :(
  3. Those of you that have read my entire blog will recognize this but I moved to Utah about a year after graduating college and lived with three girls in a 4-bedroom apartment. BTW, and perhaps hard to believe, but girls are more lewd and crude than guys. Oh yeah…
  4. Family FeudMy family was on Family Feud back in 1979 and we actually did very well winning over $13K (big bucks back then) and playing for 4 days. You can catch a sample of one of the episodes here.
  5. I carried a picture of my wife around in my pocket a year before we ever met. How can that be you ask? My wife and I are both skiers. At least I used to be. :( But skiing back in 1977 up at Alta, Utah, I, of course, carried a trail map around in my pocket. Well, my wife had lived at that ski resort the year before and had posed for one of the pictures that was used in the ski guide. Imagine someone coming up to me and pointing out her picture in the trail map and saying “you are going to marry that girl.” Would have been very freaky. Cue Twilight Zone music.boy_with_broken_arm
  6. I have 3 brothers and a sister. Back when I was in 8th or 9th grade, there was a time when all 5 of us had something broken or torn in our bodies at the same time. Sometimes hard to believe our parents survived it all. In fact the HS school newspaper did a little story on our multiple-casted family. Not that we were all klutzes or anything, just active. That’s my story and I’m sticking to it.
  7. ElfEvery Christmas, at our holiday Rotary luncheon, I dress up like an elf and help entertain about 400 people, most of which are the movers and shakers in San Diego. Don’t ask me how I have the blanks to do that. I really don’t know. But it has now become tradition and people would be disappointed if I didn’t show up that way.

As for the 15 bloggers I am nominating, that is tough as well since before starting to blog myself, I rarely read blogs. And now most of the ones I read are from, or about, cancer survivors. But each is very inspirational in their own way. So I nominate the following bloggers. Please do not feel obligated to accept the nomination as again, I’m not doing this to put pressure on anyone. But I’m a rule follower by nature so here goes.

  1. http://dannscancerchronicles.blogspot.com/ (you’ll recognize Dann from my recent blogs)
  2. http://makemomentum.com/blog/  (a fellow Rotarian who hits home with every post)
  3. http://lil-lytnin.blogspot.com/
  4. http://celpeggy.wordpress.com/
  5. http://likeadogblog.wordpress.com/
  6. http://livinglydying.com/
  7. http://thrivingwithlungcancer.com/
  8. http://ruthrainwater.wordpress.com/
  9. http://embenkickscancer.wordpress.com/
  10. http://grayconnections.wordpress.com/
  11. http://lisa.ericgoldman.org/
  12. http://aquariusvscancer.com/
  13. http://outlivinglungcancer.com/
  14. http://sometimesthefall.blogspot.com/
  15. http://lunaoblog.blogspot.com/

I have no idea which of these blogs may have already been nominated for this award. Check them out. They won’t bite. But you may just get some nuggets, or perhaps even somekernelsoftruth out of them. :)

Day at a time. Business as usual.


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.