March 29, 2015 (Sun) – A Chameleon by any Other Color

Blue bellyWhen I was a kid, way too many years ago, my friends (and brother) and I spent many a day hunting lizards up in the hills above our homes. Our favorite spots were called “the car” and “Kim’s Canyon,” named respectively for an old car someone had dumped in the hills and for the canyon behind Kim’s (one of our friends) house. We loved snagging one of the rare alligator lizards we encountered because they were relatively slow and easy to catch. But you had to watch out for their bite as they had a nasty one. Just ask my thumb. Lately I’ve been reminiscing a bit remembering my childhood and some of the things we used to do. This was one experience I recall fondly.

Bluebelly! There’s one!

OK, maybe only my brother will get that one but that was our call-out when one of us discovered a stash of lizards that included a common blue-bellied one. Great times.

But chameleons? Nah, never on our radar. In fact I have no idea if they are even common in Southern California. But Chameleonit’s a moot point since this blog is not about lizards, believe it or not. Or even lizards with cancer. It’s about dealing with lung cancer on a day-to-day basis.

So where do chameleons come in? I’m concerned that as I travel down this road and encounter tougher times that my attitude may match my surroundings. This may not be a new revelation blog-wise but it is constantly hovering over my shoulder whispering to me. For the past two years I have felt that I have had a relatively easy time with my journey. Emphasis on relatively. Thus you have rarely seen downer blogs like my Chi-Town meltdown or my more recent skirt-laced post.

So what happens if/when the ruRubber meeting roadbber meets the road and I am having a much tougher time physically? On the days that I don’t feel well, I can’t say my attitude is stellar, although unless you are a close friend or family, you would not see it because I rarely write a blog when I’m feeling crappy. Will I be able to rise to the occasion and still maintain my positive approach to this journey? I’m still learning a lot about myself and I may not know the true answer to that question until I’m in the middle of it.

**********************

Medical update:

Brain MRI Nov 2014Based on the high-def scans my radio-doc showed me last Monday, it does appear my little brain fart, er, fuzzy, is indeed expanding his horizons. Although still only in the 7-9mm range, getting bigger, no matter how slight, is not a good thing, unless of course I’m referring to, well, never-mind. The picture is an old one but essentially shows the same fuzzy on his return engagement. The doc definitely feels we should zap the sucker (again) now as there is really no reason to wait while it gobbles up additional brain-cell landscape. However, this image was shown to me two days before we left for Hawaii (where we are currently as I peck this out). So nothing will happen until I get back. In the meantime, I have some soul searching to do. Gotta figure out the timing so it doesn’t interfere with any out of town trips. Or fun for that matter. There are priorities ya know.

My lung-onc specialist at Moores will be contacting the drug trial company to hopefully get permission for me to receive the radiation treatment without it kicking me out of the trial. By the way, I guess I left you all hanging from the last blog: I am still in the trial. Apparently not enough progression yet, plus it is still the best course of action right now as there is not a better treatment option at the moment.

However, assuming I get the permission to have the radiation, and stay in the trial, it means I have Hannibal Craig comboto go off the AZD9291 (A-Team) drug for the duration of the radiation treatments. That would be about 3 weeks since my doc would be prescribing 15 straight (weekday) days whereupon I reprise my role as Hannibal Lecter. Stopping the drug for that length of time is very concerning. Very concerning?  Who am I kiddinParty on garthg? It scares the crap out of me as I am already seeing some new fuzzies in/around my lung. Taking away their poison pill, in my mind, could result in a “party on, Garth!” scenario. Not the kind of party I would be looking for.

Moores Cancer CenterSpeaking of Moores Cancer Center, I was in the waiting room a week ago awaiting my appointment with my lung-onc specialist. To while away the time I was trying to get a 50 point word against my wife in a rousing game of Words with Friends on my smart phone. Like too staring-at-phonemany people these days, I was oblivious to my surroundings while attached to my electronic device. Finally I noticed a presence standing next to me and I could hear (through my limited hearing) a very soft, polite voice ask me “are you Craig Blower?” After responding affirmatively to this lady, she explained that she was there with her husband who was suffering from lung cancer after being diagnosed only a month or two after me. She recognized my face from some of my various blogs where I posted a picture of my mug. She was referred to my postings by a common friend, Michele Hall, a world renowned underwater film producer I know from the IMAX biz. Unfortunately this woman’s husband was at the stage he was now receiving palliative care. But she told me she has been following my blog and got some good out of it. It helped start my day off on a positive note.

Hawaii 2015But you know what? Right now nothing above this line has any hold on me. Why? Because I am in Oahu having the time of my life. Just look at the view (left) from our back porch. I read a whole book in the first two days. And better yet, I did not feel an ounce of guilt in taking the time to do so. Two days ago I played a round of golf at a course we affectionately called Jurassic Park, as you can see Jurassic Parkwhy. Between the four of us we lost 31 balls. Zoom into the par 3 picture on the right and you will understand. And yesterday my bro and I went on a 3-mile walk chasing a couple local geo-caches. Saw nary a blue-belly however. Felt a tad guilty walking down the Hawaiian shoreline staring at my smart phone for the geo-location of the stash. But hey, we were outside getting exercise, still in touch with our natural surroundings, and having a blast. Neighbor Richard, are you reading this?

Craig with gunToday we did the touristy thing: Pearl Harbor, the Arizona Memorial, a drive around Honolulu and Waikiki. Here’s a picture of me getting ready to blast away at my fuzzies. Then more golf tomorrow, yadda yadda. And of course some Rombauer thrown in for good measure. Doesn’t get much better than this.

Speaking of trips, I can’t wait to head off to my first Lungevity Hope Summit in DC at the beginning of May. Lots of fellow lung cancer bloggers and other survivors there. It will be the first time, other than with my buddy Dann, that I meet other similar journey-takers in person. Very cool.

Team Craig Logo - final (Small)And, of course, I could not let you leave without another shilling of the upcoming Breathe of Hope Lung Cancer Walk on Sunday the 19th. I am still looking for additional walkers/doners to fill/support our team. Click here to join us or to help our (Moores Cancer Center) cause. Be sure to select “Team – Craig” in the “additional information” section. Hope you can make it!

Aloha.

Business as usual. Day at a time.

March 20, 2015 (Fri) – Forty Shades of Gray

Fifty  shadesDidn’t want the Internet police to nix my blog title for copyright reasons. Plus I can’t say that this situation rises quite to the level of fifty. No soft-porn scenes being described below. No black and white checkerboard to describe my current state of affairs. And no, I’m not having one. Affair that is.

This morning I had my double-your-pleasure CT and MRI scans back-to-back. The fact that it took the nurse four sticks to get an IV in place should have given me a clue as to the eventual outcome.

This afternoon I had my follow-up regular onc-doc appointment and he already had the scan results. Not one for wasting time, particularly since he was already running more than an hour behind, his first words were something along the lines of “some additional growth is evidenced.”  I have a variety of locations in and around my lungs that show various levels of nastiness but most of them have remained stable. But apparently the ones that popped (not pooped) up recently have been eating some Wheaties or something and have “progressed” somewhat. How big somewhat is remains to be seen. I’ll have to do some line by line comparisons with the last scan write up.

As for the brain MRI, there may possibly, perhaps, maybe, perchance, could, be slight growth in the fuzzy in my brain. But it appears to be Hmmmwithin the realm of measurement error so it’s not something that has me overly concerned at this point. I know my overeager radio-doc will want to zap it anyway and has already set up a meeting on Monday to discuss frying the bugger. I will not go down that path, however, unless fuzzy gains some significant weight.

So things are definitely in somewhat of a gray area. I’m not sure if the progression is enough to get me kicked out of the AZD9291 (A-Team) Kick outdrug trial. I should find out more when I chat up my lung-onc-doc on Monday. And if it is enough to cut me from the team, I’ll find out if I have any options other than chemo.

Later this afternoon, after my onc appointment, I had my monthly Zometa infusion. It took them 3 tries to get it right. I feel like a dartboard. Brings a whole new meaning to the phrase “stick it to me.” Tricky valves is what I Dartboardunderstand to be the challenge.

Eh, small stuff. Heck, I’m still sticking myself once a day with my Lovely-nox injections so what’s a few more?

Well, whatever the next phase is in my treatment, if there is a change, it will have to wait until we return from our Hawaiian vacation. Yup, once again off to hula-hula town. Can’t wait.

Team Craig Logo - final (Small)Several of you have been very generous in joining and/or donating to Team Craig – Get Fuzzy. The Breathe of Hope Walk is on April 19th, only a month away. I would love to have an avalanche of walkers in support of Moores Cancer Center and myself. Please consider joining us. Or if that is not possible, a contribution to support lung cancer research and treatment would be very much appreciated. Click here to either join the walk or make a donation. Be sure to select Team Craig under “additional information.” Thank you for your consideration.

Business as usual. Day at a time. Aloha.

March 3, 2015 (Tues) – To the Dark Side and Back

Darth VaderNo, Darth Vader is not my father. But I will be the first to admit that I dipped my toes into the dark side pool this past week. Normally The Force has worked to keep me away from the temptation of sliding into the choke grip of dismay. Yes, last week was a tough one mentally. Tougher for the families that lost loved ones. Unfortunately that is the world I share right now. Life isn’t fair.Im back

But as Randy Quaid said in Independence Day, Hello, boys! I’m BAAAAAACK! 

Sorry, I know many of you are “girls,” but the quote is the quote. In any case, as a result of my Force, and that would be all of you, I’ve slid very quickly back into the yellow scale of my chart. From personal e-mails (thank you Carol), to blog comments (many of you), to a bottle of Rombauer (thank you Pam), to a phone call from Portland (thanks Dann), to a comfort hug (thanks Mike), my foray into the blue zone was short lived. And once again, my rock, aka Kim, kept me sane. So yes, back to business as usual telling lame jokes and offering up dreadful puns. Hmm, you might have preferred that I stayed a bit right.

Nah. I know better.

So, a short blog. But I did want to let you know that I’ve seen the dark side and never want to return. Something tells me my peeps won’t let that happen. Thank you peeps.

Team Craig Logo - final (Small)Just a quick reminder if you are able to walk and/or support Team Craig – Get Fuzzy in the Breath of Hope Walk, click here to make that happen. There has been some confusion if you just wanted to make a donation. I’ve updated the links to take you directly to the registration page where you make that happen, and/or register to walk. Clicking on “Donate Now” from the original link I provided does not allow you to specify a team to support. You have to be on the registration page. On the 4th row down you can make your donation. Then the section below that allows you to select the team. If any of you have made a donation via the “donate now” link, please let me know and I can get them credited to our team. A couple of you indicated you’ve made donations but they are not showing up so perhaps that is what happened.

Several of you have already signed up and made additional donations. And some very good friends and my brother made large lead donations for the team. Did I tell you I have awesome friends and family?

Business as usual. Day at a time.

March 1, 2015 (Sun) – What Color is my Dress?

DressBy now, everyone has seen the dress picture that has gone viral. Almost as hot as the ice bucket challenge but without the staying power. It’s obviously white and gold. “Yeah, right,” some of you black-and-bluers are saying. But the true color is not all that important.

You’ll notice that I titled this blog using the possessive determiner “my.” Possessive determiner? I hCraig in dressad to grammar-Google that for the benefit of, well, you know who you are. My close friends from work or Camp Ronald McDonald will suspect I’m actually talking about some of my excursions into the less-than-macho skirt world. Yes, the evidence is clear. But these all have really good explanations. That’s my story and I’m sticking to it.

But once again, I am really delving into more of a metaphor instead of any estrogen leanings. As it relates to my journey, I can’t say that a full box of Crayolas would come into play. Instead, a better descriptor would be a range from white to black, with fifty shades of gray in
White-black stripbetween. Boy, I bet those soft-porn Googlers will be surprised when my blog pops up as they search that movie/book title.

So white would be BC (before cancer) and black would be, well, I really would find my name in the obits. I’ve been up and down that scale but staying mostly in the first, leftmost half. As my scans come back clean, I drift left. But news of progression, or blood clots, or other challenges, slides it back to Rush Limbaugh territory. And since I’m a Democrat, I prefer keeping it in blue state territory. At the moment, I’d say I’m an independent around midpoint with some recent scans, as you know, coming back with some new fuzzies apparently. I’ll know more when I have my next set on March 20th.

The white-black scale is more of a how-I’m-doing-physically one. But there is another scale of equal importance (in my opinion). That would be the yellow-blue scale describing my current frame of mind. Heading off to Hawaii after clean scans would put me in Pollyanna yellow Yellow-Blue stripterritory. News of other cancer blogger deaths slides me right into funkdom. And that is where I am at today. Just this past week, we lost two cancer bloggers with a third probably soon to follow. One of them only 9 months after diagnosis. After having my head pulled out of the sand with my last scan results, this was a 2×4 broadside that has funked me out. Still trying to stay ahead of the wave, and so far managing. But news that it has swallowed up a couple blogger brethren and is currently holding one down brings the whole mortality issue right in front of my face where I can no longer ignore it. Scary stuff. It’s pushing me right on that funk meter but you all have done a great job at not letting me venture too far in that direction. Keep it up.

Once again, I will be reprising my role as a marathoner at the upcoming Breath of Hope Walk on Sunday, April 19th. OK, maybe a 5K slow Team Craig Logo - final (Small)walker. This walk is to support Moores Cancer Center where I am currently receiving my treatment as part of the AZD9291 (A-Team) drug trial. Last year we had by far the largest team in number of walkers. This year my goal is 100 of you out there wearing red Team Craig – Get Fuzzy shirts. I know we can do it. Will you join me? We also had the 2nd highest donation level. Not bad for a first-year team, eh? I hope all of you that were able to join me last year will consider digging out your red shirts to help support Moores and me. I will be getting more red shirts so not finding, or having tossed, yours is no excuse. For the newbies, please consider an early morning Sunday stroll. But even if you can’t be there in person, I’d like our team to come out on top in the fundraising category as well. Click here to join the walk or make a donation. Follow the prompts. You can make a donation on that same page without registering to walk. Be sure you are showing Team Craig – Get Fuzzy in your selection. Thanks for everyone’s support.

Business as usual. Day at a time.

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.

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.