September 11, 2014 (Thur) – Phil it to the Brim

groundhogNo, I have not suddenly become challenged in the spelling arena. And I am not referring to philling up any more lung-suck bottles. Nor am I referencing my buddy Punxsutawney Phil, the star of one of my favorite movies, Groundhog Day. I definitely had to Google the spelling on that Pennsylvania town.

A good friend of ours challenged me to explain my switch in philosophy as it relates to the “glass-half-full” attitude change. But before I go all Dr. Phil on you, I owe you an update on the last couple of weeks.

So, where have I been? Like one of my blog posts of yesteryear (whatever that means), life just got in the Hang fanway. And that is a good thing. Business as usual, remember? Work, plumbing repairs, softball games (as a cheerleader), volunteering, hanging a new ceiling fan, stabbing myself twice a day, Rotary meetings, yadda yadda. Especially yadda yadda. Most of this was much to my wife’s chagrin. And she was not grinning, trust me on that. So sitting down for 20 hours to write this blog just didn’t make the cut. What? You think I whipped out these gems in an hour or two? OK, yeah. Maybe 3 hours. But 20 sounds a lot better. Bottom line though is that other than a fat leg and foot from the blood clots, I am doing very well. The A-Team appears to be kicking butt.

plumber_pipeHad one more tiny glitch however. Since I am the first one in this trial here, they are learning as bit as they go as to the idiosyncrasies that Astra Zeneca (the A-team maker) require. Since I originally had some brain mets in the early going, they apparently need a brain MRI every time I do a follow-up CT scan. So I had to interrupt my incredibly enjoyable pipe repair work outside in the mud on a Saturday to go in for that MRI. Probably a toss up as to what was more enjoyable. But now they have all of the tests they need and I know exactly what will be required every 6 weeks from here on out. Considering I had the other MRI (that they didn’t know I needed) only a month or so ago, and it came back clean, I am not even calling to get the results of this one. How’s that for glass-half-full, eh?

Although my business trip to Toronto this month was nixed, I am green-lit for our planned trip to our friend’s lake-view home in October, just outside of Boston. Because of my leg clots, I gotta score me a bulkhead seat though to give my legs some room and then be sure I walk the aisles a lot. I understand Southwest has a “blue sleeve” pre-boarding pass you can get for situations like this. The problem is that I look perfectly normal and people have taken advantage of this policy so I’m bound to piss some people Compression stockingsoff as I walk past them. Them’s the breaks. Still awaiting approval, believe it or not, for insurance to agree to cover the cost of some very stylish custom compression stockings. Somehow they are considered “durable medical supplies” so it has to go through the process. Just a glitch.

gooeyOK, on to the more ooey gooey stuff.

Before my diagnosis a year and a half ago, I really was a glass-half-empty guy. Always looking at what could go wrong in a given situation. Allowing the negative side of any circumstance outweigh the positive. I’m honestly not sure pollyanna2where that perspective originated but I do know it has been part of my makeup as far back as I can remember. I was the pessimist and my wife the Pollyanna optimist. Not sure how my wife saw around that and agreed to marry me unless she thought she could change my outlook.

So what’s different now? Well, for one thing, I have cancer. Duh. So things are lot more black and white than before. Previously I could have reacted to different situations in a lot of different ways. But suddenly, as I’ve said before, I now see only two options. I can crawl into a ball, withdraw, and let things take their course. While I wpathsould still have been on the same treatment regimen I am now, I would not have had the healing power of the positive thoughts and prayers that I have received from everyone because I would have tuned everyone out. Or I can take the other road (previously less traveled by me) and head down the path that I have chosen to take for the past 19 months. But who’s counting? As Lincoln said, and a friend reminded me, “folks are usually about as happy as they make their minds up to be.” So while I may not be jumping up and down with enthusiasm about having to give myself a stomach injection twice a day, it’s just something I do now, like brushing my teeth and flossing. Yes, I floss. I plan on outliving my teeth so I want them to last at least another 25 years. It’s just a new normal.

But what’s funny, if you can call it that, is that I don’t think I’m a glass-half-full guy now. That may seem a weird conclusion considering the relatively positive tone of most of my blogs. I just know that this is the path I’ve opted to take and I do not plan on diverging from that course.

bad luckI never have pulled the “why me” attitude, although I suppose I could have. Heck, I’m a good guy overall. I have never smoked (not counting those funny things back in college mumble mumble years ago). So I consider this whole episode just (bad) luck of the draw. And while I continue to ignore statistics, I do know the facts. I have cancer and there is no way around that.

Am I scared? Hell yes. Does this feel like a nightmare that I hope to wake up from? At the beginning it did, but I quickly accepted my situation and I do not dwell on that. A fellow cancer blogger (Ruth Rainwater) recently addressed the opinionCourages and comments from people about how we can be considered heroic or courageous with the attitudes we portray in our blogs. As she said, we are people with cancer, going about our daily lives as normally as possible. Is that courageous? Nah. Is it heroic? Double nah. Save those descriptors for those that lost their lives 13 years ago today. I will grudgingly accept inspirational, although even that adjective can be hard to swallow, since I’m just a guy with cancer who chats about it. I am very pleased, however, that some people are entertained and informed by my blog. I know how hard it was for me initially and reading the blogs others in my (currently fat) shoes really helped understand the journey.

Speaking of people reading my blog, a fellow C-traveler from Portland who I met because of my blog, is trying to get into the same trial I’m in at UCSD. Dann Wonser found out about the trial here through me and so I am very glad about how this blog is helping in situations like that. He is coming in at the tail end of the trial opening and still needs to qualify but we are all hopeful he gets in. So, since I’m in a pretty stable situation right now, please send your positive thoughts and prayers his way. Click on his name and leave him a comment on his blog. He is on a real roller coaster ride right now and could use everyone’s positive vibes.

Monday is my regular follow-up with my lung-onc at Moores. I’ll be getting a new batch of A-Team poppers and, of course, an EKG and blood draw. And then another blood draw that day at my regular medical provider, of course. :) Small stuff.

Business as usual. Day at a time.

August 25, 2014 (Mon) – Clickety Clack…Clickety Clack…

Those of you following along (that would be all of you, right?), should probably get the reference in the title. But we will come back to that later in this blog. Sorry to disappoint. But you won’t be disappointed. :)

The last blog entry was made lying flat (OK, I was sitting up) on my back in a hospital bed a week ago. As you know, although I Curveballobviously can’t hit a slow, underhand pitch to save my life, I was pitched a curve ball a week ago. Honestly I’ve probably handled that pitch better than the one in my regular league. But things have certainly taken a few unexpected turns. Looking back on my blog of August 12th, I closed with “So nothing unusual going on for the next two weeks at this stage.” Oh, how much more wrong could I have been?

I was discharged as expected last Tuesday after overnight observation. And only after I demonstrated my stomach injection technique (with the Lovenox blood thinner) at 6am so they were comfortable with turning me loose to do my own stabbings. Piece of cake. If you like that kind of cake. Not my favorite.

But I was hit with another bit of surprise when the doc actually read the results of the ultrasound and CT scan that confirmed both clots in my leg and lung. I had assumed (and you know the danger with that) that I had a clot in the leg and one in my lung. Oh I wish. Turns out I had 4 fully blocked veins in the leg and multiple clots (emboli) in my lung. Here’s the official report: (click to enlarge)Vein sonogramEmboli report

So the old freakout-ometer took a monstrous jump upon that news.  I had done a bunch of research on lung cancer (of course) but Anklesreally nothing on DVT’s or PE’s. I’m really starting to dislike acronyms.  So 4 blocked veins just might explain the swelling in my leg and ankle. Jathink? Here’s an ankle shot comparison, this time using my very own props: (click for full effect)

So a week later I have picked up an incredibly useful skill at the art of needle insertion 2x a day. I could give some of those nurses a class. You know, that ones that had do-overs when they tried to locate a vein. In their defense, I don’t have to aim for anything in particular other than a slab of flab on either side of my belly button (but at least 1-2 inches away, per instructions). Knew there was a good reason to add that layer of fat over the years. But since I have to jab both sides every day, I try and avoid hitting the same spot that was recently used. I found a new technique in using the freckles on my stomach as guideposts. Hey, I never knew I had the big dipper framed in freckles on my Constellationsstomach. Tonight I aim for Orion’s Belt. Gotta keep a tight schedule since Lovenox has a short lifespan in your body so for now I’m on a 7am & 7pm schedule. Oops, 15 minutes from now I’ll have to take a short break.

So I now have some new risks to be aware of. The blood clots should dissolve over time but it could take 6 months to completely resolve. Regular daily activity (that doesn’t involve jumping up and down) poses no particular risk for additional leg clots breaking off and heading north, but there is always a risk. And my doc nixed my upcoming business trip to Toronto as she didn’t feel it would be a great idea for a patient with active leg clots to sit in a plane for so many hours and travel to a foreign country.

As for the blood thinner, that presents its own set of risks. Obviously I want to stay away from any unintentional bloodletting. I tried to explain to my wife that I could get cut while washing dishes but she wasn’t buying it. But I might, read might, get green-lighted (lit? – help me out here Wendy) for softball down the road if I’m careful and not dive headfirst into a base. Head slideCuts would take a bit longer to stop bleeding and bruises would probably be bigger. But the real risk is for head trauma that could cause bleeding on the brain. So if I play, I would probably wear a helmet for that run down first. Most infielders are pretty good but but a few errant throws are known to occur and it would not be good to get hit in the head with the softball, which really ain’t soft. If that were to happen, I just head off to ER and explain I got hit on the head while on blood thinners so they can take some preemptive action if needed. The bigger danger is waiting until you show some symptoms before going in because that would be too late. No bueno. Guess I’ll have to give up my lifelong dream of becoming a stunt man.

Alright, you’ve been patient long enough. I have to admit I almost started writing this portion of the blog a couple days ago because I cheated and got a sneak preview of my scan results since they had to do a CT scan last Monday to check for emboli in my lung. While they were looking for clots, they also had some favorable comments regarding the tumors and their current state of affair. (oops, gotta go hunt for Orion’s Belt…). OK, I’m back. Friday I went in for the CT scan that was used to compare to the one taken just before the trial started.

So today I had my meeting with the lung-onc-doc at UCSD today to go over progress after 6 weeks on the A-Team (AZD9291). When she walked into the room she started with the phrase “incredible results.” Followed with “better than I could have ever hoped for.” She had me at “incredible.” OK, our day was made. Let’s make that our week. Nah, our month. Actually it was the beginning of May when I got the bad news that Tarceva had stopped working its magic so this is the best news since. The A-Team Scan comparisonRoller coaster up2has a similar longevity meter (6-12 months or so) but the drug has not been out there long enough to get really definitive stats, and you all know I ignore those anyway. I’ll take the reprieve, however long it is. So ergo (there’s that word again) the reason for the roller coaster click-clacking its way up the slope for a change.

Today I had to have my blood drawn before my appointment. This was after last Friday when I had an injection for the CT scan contrast. I then went to my regular health care provider for a second draw. The reason why the two can’t share results would fill 3 blogs so I won’t bother. Tomorrow I go in for my scheduled 11-hour procedure with blood draws and EKG’s every two hours. And then Wednesday I have to go back for Pincushionone more follow-up red stuff extraction. If you add it up, since Friday, and by Wednesday, I will have been stuck 17 times (counting my Lovely-nox selfies and assuming all the nurses get it on the first try). Can you say pincushion?

But after Wednesday, things should, read should, settle into more of a rhythm, even though my wife would confirm that I have none. I may get to that philosophical blog yet. Oops, forgot I have my monthly Zometa infusion Friday. OK, make that after Friday

Staying home for this past week has been its own trial. We did get away to visit my brother in Orange County over the weekend however. It was nice to get away even though I was only able to ride as an observer in the cart while the group played golf.

And finally, I have to thank my co-workers for two awesome get-well gift baskets that were delivered recently. Very cool.

As a friend of ours said the other day, EGBOK. I had no idea what that meant but she explained it as Everything is Going to Be OK. Yes indeed. It will.

Business as (a new) usual. Day at a time.

August 18, 2014 (Mon) – …And the Roller Coaster Takes a Big Dip

Just when you thought it was safe. Hey, it was Shark Week after all. So no telling what could happen. You could get caught in a sharknado, for example.  image    

Well, because I really did not have any content for a blog update, I was going to make this a more philosophical one. Sorry Lynn, you’ll have to wait.

Instead, I am typing my blog tonight on my iPad while lying in a hospital bed. Surprise, surprise, surprise! So, as before, don’t expect much of the cutesy graphics because it’s much more complicated using this device.

So how did I arrive at this location you ask? Glad you asked.

Just when I was finishing my last entry blogging about how well I was feeling, the worm began to turn. I was feeling short of breath again (abbreviated S.O.B. of course) and after a couple days got an appointment for what I expected would be my lucky 3rd lung-suck thoracentisis. Yet when I went in last Friday, using the ultrasound, nary a drop of fluid could be found. Hmm. What the hell? So what could be causing my air gulping after two flights of stairs?

My clinical trial CT scan is scheduled now for this Friday. This is the scan that they will use to compare against the one I took just before the trial started and thus see how the A-Team has been doing. I figured I’d wait for that scan to see if they could also figure out what was causing my breath shortfall.

Best laid plans.

The area behind and on the inside of my right knee has been bugging me a bit over the last week but I brushed it off as probably something I pulled slightly playing softball, a fairly logical conclusion based on my imagehistory. In fact it wasn’t bad enough to keep me from playing in our softball playoff game yesterday. Of course I went 0 for 4 again. Not sure why they let me keep playing on this team. Maybe it was my pitching or the 3, almost 4, double plays I turned at the rover position. Not that I was counting or anything. :) Always looking for a silver lining….

Yet, when I woke up this morning I could hardly move my right leg. Had to basically lay my pants on the imagefloor to put my leg in as I couldn’t bend it. Of course I continued my wishful thinking (and brain challenged) approach to the issue by assuming it was something I did trying to run out one of my ground balls. Nyet.

So I sent my lung-onc an email this morning explaining my symptoms, and I received a fairly quick response. It essentially said, though in not these exact terms, to get my ass into emergency as I possibly had a dangerous blood clot in my leg (deep vein thrombosis – aka DVT). Nothing to fool around with. OK, my scare meter took a big hit.

So in the ER they confirmed via ultrasound that yes, I did indeed have a blood clot in my leg. Scare meter jump. Apparently cancer patients are considerably more susceptible to imageblood clots than the average Joe. Maybe if I change my name to Joe? They then took me in for a CT scan to ensure that no clots had broken off and traveled into my lung arena. Scare meter off the chart when they confirmed a clot in my left lung as well. (aka pulmonary embolism – P. E.). Just love these acronyms. Hey, I thought I was supposed to know well in advance when things were going south. I wasn’t prepared for all of this immediacy crap.

So that brings me to the hospital bed where I will be overnight for observation while they monitor all of my vitals. Late in the afternoon they gave me an injection of Lovenox, a blood thinner that will become my BFF apparently. In fact, once I get out of this place I will be in charge of giving myself two jabbings a day with this stuff into my belly roll for the foreseeable future, likely forever. Lucky I have plenty of slab to grab to give myself the injection. Those of you with diabetes will go eh, no big deal. And I’m sure I will get to that point (intentional pun) soon enough. So tomorrow morning they will observe while I do my own masochistic stabbing to ensure I know how to inject myself properly. Hey, learn something new every day, right?

So since this is a blood thinner that I will be on, perhaps forever, I need to be concerned about any possible injury or cuts. Contact sports are out so I guess my weekly rugby games are history and I won’t be able to defend my UFC championship this year. Bummer.

But there is that same disagreement I had earlier in the year when we debated about whether the softball I play is a potential contact sport. I may have just played my last game if indeed I lose that argument. Perhaps they will let me play if I wear a batting helmet. Stay tuned Steve. Skiing? Problematic most likely. Guess I will just have to get a lot better at golf.

Next update will probably be early next week when I get the results of the scan on Friday. Stay tuned on that as well.

Business as usual, although we have a new business plan. Day at as time.

August 12, 2014 (Tue) – A Potpourri of Prolific Proportions

cornucopiaOr perhaps a cornucopia of considerable content? Maybe a slew of substantial substance?

Maybe I’ve been playing Words With Friends too much. Then again, these words are mostly too long for that Alliterationgame. Basically this means that I could not come up with anything for a title other than some lame-o alliteration of awful abundance.

Essentially lots of things have happened in the last two weeks since my last post, but mostly less than noteworthy notice. Oops. Sorry. So here is a quickie list of items to get you caught up to date on: eye issues, swollen ankles, multiple blood draws, clean brain MRI, upcoming tests…

MRIBeep beep, back up the truck. Did I just say clean MRI? I don’t think that is less than noteworthy. I tried to sneak it by you to see if you are really reading this. But here’s the deal. Apparently because of my original historEmpty brainy of having brain mets back at the beginning of my journey, the trial was supposed to get a baseline scan of my brain at the beginning of the trial. So last week, when this was discovered, they rushed me into the mag-machine for that test. And it wasn’t until yesterday that I finally got the results. To quote: “Stable brain MRI with gadolinium enhancement. No new suspicious mass or enhancement.” In other words they found nothing. Why is that not surprising? I’m sure many of my close friends would corroborate that statement.

Sorry you didn’t get the cutesy calendar reminder as per usual but it caught me off guard and came and went pretty quickly. I’ll be sure to include one on my upcoming CT scan, as soon as I have a date for that. Now that will be the biggie since it will show how well the A-Team (AZD9291) has been doing (or not doing). As good as I am feeling, I would be very surprised if it doesn’t show some positive effect.

ankle swellAs for some of the other mentioned material (oops again) above, I occasionally have had some bouts of ankle swelling. But it comes and goes and happens equally to both ankles at the same time. The lung-onc at Moores did not feel that was a huge concern, that it was not out of the ordinary, but of course, said to keep an eye on it. This is not my ankle but it looked similar.

As for my eye, a week ago this past Sunday, I started experiencing some eye irritation in my right eye. Seemed like something had invaded it like how you would normally feel if something got into it. But typically that works its way out in an hour or two, right? Well, it bugged me until Monday afternoon when it finally started feeling a bit better. Yet, when I got up Tuesday, I could hardly open it due to the pain. The lung-onc I saw that morning was concerned that I had some Bloodshot eyeother more serious issue and indicated I needed to see an ophthalmologist as soon as possible. But now we dive back into competing medical groups. It took until Friday before I was able to see an oph-doc, and that was only after my regular onc-doc called his sister-in-law, the eye doc, who squeezed me in. By then my eye had seemed to return to a more normal dry-eye discomfort. After all sorts of less than pleasant eye tests (I really don’t like anything near my eyeball), it was confirmed that I had no scratches, nor a detached retina or anything else out of the ordinary. But it was recommended that I ramp up the “Refresh” eye drops because my eyes were definitely way too dry.

Of course, there is more to it. What, not surprised? So in standing and leaning back and titling my head back to put the drops in, SternumI experience some reasonable discomfort in my sternum area. What the hell? So is this from scar tissue from my early lung zapping that is being yanked? Or just stretching a part of my anatomy that has not seen any exercise or stretching in the last 18 months? Of course, that would apply to my whole body. Or could it be something, wait for it…more nefarious? Who the heck knows but unless it worsens, I  will wait until my appointment on the 25th to chat about it with my lung-onc. And the CT scan (sometime near the end of this month or early Sept) should confirm or deny anything else going on.

But here’s the bad news: I went 0 for 4 in my softball game Sunday (but we won the game). And my wife killed me in ping-pong the other day. No mercy for this poor C-boy…Hey, business as usual in both regards.

File3000 (6)I would be remiss if I didn’t mention that yesterday my wife and I celebrated our 35th wedding anniversary. A year and a half ago, there was some doubt that we would get to observe that milestone. Now I can’t wait until our 50th.

So nothing unusual going on for the next two weeks at this stage. But I feel a different kind of blog brewing. Stay tuned Lynn.

Business as usual. Day at a time.

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.

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.