February 13, 2015 (Fri) – Lucky Friday the 13th

friday-the-13th-title-screenshotWe all have our superstitions, right? Mine are more on the order of OCD gotta-do’s. Being sure all of the bathroom cabinets are closed when I leave. When I read the paper (yes, we are still papyrus reading dinosaurs), I always read it front to back, never out of sequence. Making sure my checkbook (yes, I still have one of those too) is balanced to the penny. OK, I actually gave up on that several years ago but I used to spend an hour looking for the 26¢ I was off. But today we are not here to discuss my bookkeeping quirks.

So when did Friday the 13th turn lucky? After all, it was 17 years ago today that I had my spinal fusion surgery, and it just so happened to be on Friday the 13th as well. Totally lost my voice for ten weeks after they nicked one of my vocal cords. Lucky? I’m thinking not.

two-yearBut as you know, today is my two-year anniversary from the date I was given my initial lung cancer diagnosis. As you also know, I try and avoid statistics, but I do know the odds were against me even being here to type this blog two years later. So, the fact that I’m still around to 2-digit finger poke is lucky indeed. But luck mixed with a whole bunch of other stuff.thank-you

So today I give thanks where thanks are due:

Medical Staff (onc, lung-onc, radio-doc, GP etc.)
Yes, I’ve had an occasional issue here and there with a misdiagnosis or forgotten drug interaction. But over all I have had excellentstaff2 treatment. Over at Moores Cancer Center, all the staff in the infusion center know me and my oddball sense of humor. We all joke about the likelihood of getting stabbed more than once to draw blood. OK, I’m sorta joking. And my urine specimen is my special “gift” that I provide to whoever drew the short straw and had to deal with me. All of the staff who have assisted in my numerous CT scans, MRI’s, xrays, bloodletting excursions, radiation treatments, EKG’s, echocardiograms, Zometa infusions, and yes, even my lung-suck thoracentesisessessesses (thoracentesi?), have been very pleasant, and in many cases, downright friendly. Well, maybe that first knuckle-noogie echo-tech is not on this list. But how many docs do you know will high-five you on a good scan result?

Even though I won’t give it its own paragraph, I also want to thank my wife’s insurance company. We are very fortunate to have a wonderful plan through my wife’s job as a teacher. After two years, I’d venture to guess that my medical bills would have approached the $1/2 mil threshold. All in all, I doubt seriously if I’ve been out of pocket $1000. Definitely feel lucky in that regard.

biotech-pipetteBio-Technology
Even if I was diagnosed only 5 years earlier, I’d be singing a different tune. If I was even alive to sing. Even if you wanted me to sing. Which you don’t. Biotech advances, especially genomics research, have grown exponentially and are bringing new drugs and treatment options to bear quickly. Two years ago I had never heard of EGFR or T790, but those two acronyms or abbreviations, along with the designer drugs associated with each, Tarceva and AZD9291, have played an extremely important role in my survivorship to this day. Nobody knows what tomorrow will bring but I raise a toast to the pharma companies out there working on the next new thing. After last week’s news, I encourage you to work even a little faster…

Fellow Bloggers, Tweeters and Support SitesBlog word.
I met some of you through your own blog or through websites that deal specifically with the type of cancer I have. Unless you’ve been there, doing that, it’s hard to relate exactly to what is going on in my life and my not-always-there mind. Having other survivors to chat with that are going through what I have, or have already gone through a particular treatment, is a blessing. Nobody likes surprises and I’ve been able to avoid most of them with your help. Of course there is still a lot of unpredictability in my life, but at least I know, for the most part, what my options are because there is a village out there lending advice and support.

kidsFriends
That would be you. You have no idea how much your support, good wishes, prayers, bottles of Rombauer, Facebook and blog comments and get well cards have meant to me.  I have only been able to maintain a semblance of sanity and keep a semi-positive outlook because of you all and my family. I may not respond to each comment on my blog, but trust me on this, I read every single one. And I’ve even shed a tear over a few that really hit home to me at the time.

Familyfamily-clip-art
Of course my family is my rock. They have had to ride this roller coaster right along beside me, and try and not scream during the scary twists and turns through tunnels etc. None of us bought a ticket for this journey but there they are, in lock-step with me every day, ensuring that I keep placing that next step right in line with the last one. Business as usual? It would absolutely not be possible without them.

So Friday the 13th is lucky? Damn straight, even with last week’s less-than-stellar scan results. I am still here, I feel great, you all say I look great, I have an incredible support network to tap into, and I still have a few bottles of Rombauer left. Lucky indeed.

Rombauer toastOK, don’t forget, if you are available this evening (Friday the 13th) at 7pm PST, join us on the Cancerversary page and drop in comments, pictures holding wine glasses, anything you want. I’ll be on the site from about 7-8pm or so responding to comments, pictures, or even any questions you might have. Never could figure out how to do a really techie virtual celebration so we will have to use this somewhat lame-o method. But hey, the bottom line is I get to celebrate. And here Kim and I are getting ready. I’m modeling the “Life is Good” sweatshirt she bought me. You can click on the picture for a better look. Check out the wine glasses as well.

Business as usual. Day at a time.

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February 9, 2015 (Mon) – Life’s a Beach

beachIt’s certainly not difficult to find beaches here in San Diego. From my house, sand is only 20 minutes away. The operative word here is sand. In many cases, life described as a “beach” is a good thing. It certainly is when describing our annual visits to Hawaii. Not so much when your T-shot lands in the granular stuff on the golf course. 3 times in a row. Like this past weekend.

But I am alluding to a more metaphorical use of beach. Or sand.

Since last July when I began the A-team (AZD9291) treatments, I saw huge benefits right out of the chute. Other than the brief detouClicking heelsr with blood clots, I have felt very healthy and recently have rejoined my softball team in an active role. Yes, I had a questionable brain MRI pop up, but since then it has remained stable and I had/have no reason to believe that will change. So my wife and I have been in, what she calls, La-La-Land. Definitely business as usual, virtually as normal as can be. This is where the beach, or sand, comes into play.

Head-in-sand-1-600x398Today I had my head very abruptly yanked from where I had firmly placed it into the sand. Although my recent brain MRI came back unchanged, and stable (now for the past 5 months), the CT scan did not play so nicey-nicey. To quote: “Enlarging bilateral pulmonary nodules, measuring up to 12 mm in diameter, suspicious for malignancy.” Glad I did not get these results before this past birthday weekend where my wife and I enjoyed two days of golf with my brother and his wife. This news would definitely have had a dampening effect on the weekend. My daughter put it in perspective, however. She mentioned the old joke: “What do you call a doctor that got ‘C’s’ in biology? …Doctor.” So she says I ended up with a B- since I had an A on the MRI and a D on the CT scan. Heck, it’s a pass/fail course anyway so all I have to do is pass, right?

My lung-onc was not overly concerned, yet, and for now these results pose no risk of getting me kicked out of the trial. For now. So the next scan in 6 weeks will be very interesting, and majorly scanxiety inducing. And this next set of scans would be about 5 days before we leave for Hawaii. Hmmm.

Per my lung-onc, when I asked her if there were any magic designer drugs following on the heals of AZD9291, she said no. There might be a new EGFR specific drug trial in 3-4 months, but she didn’t have a lot of info and indicated it could be fairly dangerous. So it is another wait and see game, a game I’m not overly enthused about playing.

Rombauer magnumOK, that was the update. But this week it’s all about celebration. Friday, as you know, will be my two-year anniversary fromRombauer Magnum signature my initial diagnosis. Alluded to above, my wife and I started the celebration early with a 2-day trip to a local golf course resort with my brother and his wife. And for my birthday, my brother bought a magnum of Rombauer chardonnay directly from the winery and convinced the owner of the winery (Mr. Rombauer doncha know) to sign it and ship it down for the celebration. How cool was that?

If you care to tag along on Friday, at 7pm PST, for the virtual party, I will be monitoring this celebration site.

Feel free join us if you can, post pictures in celebration or just make comments. I will be monitoring that site and responding accordingly. I’ll be sending out one more short blog on Friday morning as a reminder. If not, anything you want to add before then would be great.

See you then.

Business as usual. Day at a time.

February 3, 2015 (Tues) – You’ll Never Believe What Happens Next…

How many of you are absolutely sick of this lead-in teaser, or some similar variation, that has totally infiltrated Facebook? And how many of you often click anyway? How can you not, right? Some of them are just too good to pass up, whether it is some cutesy dog video or an impossible science experiment. Plus I often look to see who has posted it to determine if I respect their judgement in posting.

100But what does this have to do with this, my 100th blog posting, you ask? Well, this phrase could have been said to me on the day of my diagnosis almost two years ago. No, I had no idea what I, and my family and friends, were in for. So if I could go back in time and prep myself for this journey, kinda like one of the Terminator movies, here is what I would tell me. Minus the “I’ll be Baack” Arnold impressions.supermanescapefromkripton5066

  1. Be ready for the roller coaster ride of your life. Magic Mountain (a Six Flags amusement park) has nothing on this journey. OK, the Superman Escape from Krypton ride might come close.
  2. Plan on becoming a pincushion extraordinaire. Getting poked, re-poked, and poked again will become second nature. And third, and fourth. Good thing your body replenishes your blood. Otherwise I would have turned into a prune long ago.
  3. grow some ballsDon’t assume your docs know everything. Whether it is your onc-doc, lung-onc-doc, pulmon-doc, or a radio-doc, they cannot stay on top of everything. Be your own advocate and grow some big ones. Do not hesitate to call your doc out if you disagree with a treatment plan. You gotta stand up. Nobody knows you better than you. In more than one instance I was prescribed treatments that would have conflicted with other treatments I was undergoing. If I hadn’t said something, well, let’s not go there.mutations
  4. Insist on having them test for mutations in your tumor(s). I had no idea what that meant. When my pulmon-doc called to give me the bad news about my diagnosis, I failed to understand how important the news was that I was EGFR positive. And later on my T790 positive test.
  5. Stay ahead of the curve. This means immediately bringing Google to its knees with your research. Find some good lung cancer survivor groups in a place like Inspire.com and chat away. You will learn a ton in a short period of time. Just avoid statistics. I know that will be impossible at first but they are always several years out of date and are essentially meaningless. With the exponential growth in genomic testing and specialized treatments, nobody can predict where you will be in one, two or even ten years from now.
  6. going publicGo public immediately. Or as soon as you have recovered from the initial beat down. The more people know what is going on with you, the sooner the positive thoughts and prayers can help you with your mental outlook. And I’m a firm believer in a positive frame of mind helping the physical healing process. Getting the word out quickly will also help prevent those awkward moments where you run into someone at the store and they ask how you are doing. Do they know you have cancer or are they just being polite? Yes, you will get some off-the-wall treatment recommendations from some well meaning friends, but you will also get articles and links to publications about upcoming treatment options you did not know about. Just be bold.Blog word.
  7. Start a blog. It’s a great way to get out what is going on with you and keeping family and friends informed. They are anxious to know what’s happening but feel like they’d be bugging you by calling. And you’ll never know when someone else gets some side benefits of your personal experience in their own journey.
  8. caregiverBe sure your caregivers get some attention. I have not been very good at that aspect. They are often having just as tough of a time as you, maybe even more so since they do not feel they can let down their guard. If you go into a momentary hole, it’s easily forgiven. If they do, they feel like they are letting you down.sideeffects
  9. Be ready for side effects up the wazoo. Or maybe out the wazoo. Oops, TMI. Sorry. Yes, it’s mostly all small stuff in the ultimate scheme of things, at least in my case to date, but stay in touch with others that have gone through that treatment to get an idea of what you are in for.
  10. Be wary of leg pain/swelling. I was never told, or at least I did not remember, that lung cancer patients have a much higher risk of developing deep vein thrombosis (DVT’s) in their legs. These blood clots can then break off and travel north into your lung and cause some very serious issues. Had I been aware (or remembered) this was a possibility, I might have gotten in sooner when I began experiencing leg pain and might have avoided the pulmonary embolisms (PE’s) I suffered as a result. Be always listening to your body.
  11. Don’t cut back on normal activities if you can avoid it. I found the more I maintained my regular day-to-day activities, the more I was able to handle what got thrown at me.
  12. NewLifeOldLifeGet ready for a new normal. And a normal that gets redefined continuously throughout your journey. It is what it is. Do not look back or try and zip directly to “go” and collect $200. Day at a time as you all know.

OK, that’s a quick dozen of things I wish I had known earlier on. Some of which I jumped on right away such as going public and starting a blog. But other stuff I learned as I went. And that’s a bit tougher road to travel.

As you know, I am approaching my two-year anniversary of my diagnosis. I will be celebrating on lucky Friday the 13th. In honor of that 2-year-anniversary-flyer-1024x1007momentous occasion, I am throwing a virtual party and would like all of you to join me. And your friends. And your friends’ friends. Really all it means that you are “attending” my party by electronic proxy. Some of you have already signed up via my earlier Facebook post. So click here to join the fun. Click on “going” and then invite all of your friends. All it means is that you are supporting me at my two-year mark. Nothing to do other than that. You don’t have to be anywhere at a set time or anything. I’d love to see this number get up to 500 but it will take a lot of inviting/sharing to make that happen.

But I am going to offer an additional option for those of you that are looking for perhaps an even deeper involvement. I will be on that web Rombauer glasspage at 7pm (PST) on Friday the 13th monitoring and responding to any comments. I think it would also be very cool to post pictures of you toasting to the celebration. I will start it off with my own picture that morning. Whatdaya think? Here is a picture of a glass (one of two) that some good friends gave me. They made a special trip to the Rombauer winery to pick these up. How cool is that?twitter

I just started my own Twitter account. I could use some lessons from those of you that have been tweeting a while. But if you want quicker updates on where I stand, you can follow me @Getfuzzies. 

Last but not least, I go in this Thursday morning for my six-week double-your-trouble twin scans (brain MRI and CT scan). If you follow me on Twitter, I may have the results out by Friday, even tho I am taking the day off. My wife and I are joining my brother and his wife at Rancho Bernardo Inn. So probably the most I would be able to get out would be less than 140 characters anyway. Probably similar to what my golf score will be. Hopefully I’ll be getting a nice birthday present.

Business as usual. Day at a time.