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

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

Today we celebrate our Independence Day.

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

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

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

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

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

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

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

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

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

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

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

Business as usual. Day at a time.

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

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

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

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

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

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

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

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

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

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

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

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

So here is my schedule for the upcoming week:

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

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

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

Business as usual. Day at a time.

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

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

To Tarceva.

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

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

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

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

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

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

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

Business as usual. Day at a time.

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

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

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

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

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

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

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

Good save?

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

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

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

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

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

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

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

Business as usual. Day at a time.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Business as usual. Day at a time.

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

confused 2Well, not really sure.

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

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

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

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

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

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

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

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

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

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

Business as usual. Day at a time.

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

…round and round.school-bus

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

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

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

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

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

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

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

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

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

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

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

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

Business as usual. Day at a time.