July 28, 2014 (Mon) – Just Call Me Uppity

upYeah, I suppose I could get a little attitude going. Easy to get a little cocky right now. But in reality, it should be altitude. I know you’ve been waiting for an update. And the emphasis is on UP-date. So if I’ve been too subtle, I am doing really well. Things are looking up. Everything is on the upswing. I ended the week on an up-note. Appetite is up. Golf score is up. Oops, how did that get in there? Well, you get the jist. So bottoms up!

12 days into my new A-team (AZD9291) treatments, things have turned around significantly from where they were just two weeks ago. I now take the stairs at work without thinking twice. Maybe not two at a time but stairs nonetheless. I Stairscan sleep on my bed (not the recliner) without any issue. I even played 18 holes of golf yesterday on a regulation course. Ergo the slip of tongue above. What, a high golf score is not good? Why didn’t anyone tell me? Got more than my money’s worth then. But no side effects that I can discern, other than perhaps a bit more of a dry-eye that I need to keep lubricated. No big-D; no opposite of big-D. No super dry skin; at least not any more than before. Bottom line: feeling pretty damn good. 🙂

Half full glassNow let’s be real. Even the glass-is-half-full-guy (who prior to dx was a half-empty guy) has to admit that it’s way too early to draw any conclusions. 12 days does not a success make. My next scan will be in about 4 weeks which will tell the tale. But whatever the reason, I am no longer severely short of breath and my appetite has returned. In fact the other night I powered down 4 fat, eatinghomemade tacos, not the cheesy (oops) Taco Bell variety. My wife looked at me like “Who are you and what did you do with my husband?” A week earlier I would have had to force down one taco. And I have no intention of reprising my role as a lung-suckee, thank you very much. So no more gross liter bottle pictures.

Thursday I have my 2nd clinical trial followup appointment to include a blood test, urine test, and EKG. They forgot to tell me about the urine test last week so between an empty bladder and performance anxiety, it was a bit of a challenge. OK, TMI. I get it. I’ll be better prepared this week though.

Appropriately enough, I am watching Rocky III as I work on this blog. I have to have mindless chatter in the background so I can concentrate on my endless witticisms. Yeah right. But since Mr. T is part of the A-team, I am torn between rooting for him (Clubber Lang) and Rocky. Have to go with Mr. T.  Heck,  he wins the first fight anyway. Oops, didn’t mean  to spoil the outcome for anyone…

Google yourselfOK, how many of you have Googled your own name? If you didn’t raise your hand, you’re lying. We’ve all done it, out of curiosity mostly I suppose, to see where we might pop up. Now if your name is John Smith, you might have a bit of a problem. But “Craig Blower?” Not so much. I even set up a Google alert to e-mail me whenever my name pops up on the internet. Want to be sure nothing nefarious (there’s that word again) shows up. Occasionally I’ll get a hit on Craig Blower, the teacher in Michigan, or Craig Blower, the dairy owner somewhere in the Midwest, or even Craig Blower, the convict in an Irish prison. No, we are not related. But this past weekend I got a hit indicating my name was used in someone else’s blog. Of course, I had to check it out.

Pam Hawley is one of my blog readers who, like many, remains in the background but stays on top of my journey by subscribing to my updates. I knew her name from when she, and a lot of you, came out of the closet upon request during my Rocky Horror blog back in January. But I had no idea she wrote her own blog. The Google hit I got was from her recent blog update where I was Blog word.mentioned.  Many of you read my blog but I am not aware of any personal specific connection to it unless a comment is left behind. In this case, Pam’s mother was dealing with her own battle with lung cancer. Unfortunately her mom recently passed but what Pam wrote in her blog had me choked up for the 2nd time in 3 weeks. You can read it here.

As you may know, I originally started my blog to keep people updated so they wouldn’t feel awkward about asking me about my status. I know there are those of you that have a personal connection, either with their own cancer journey or that of a loved one. And especially those I don’t know who have found me via one of the other cancer sites or even Googling various cancer phrases. But I really do not know how many read my blog for that reason. However, after reading Pam’s blog this past weekend, I am honored and touched to know that my writings have played some small part in the journeys of others. Thanks Pam.

Business as usual. Day at a time.

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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.