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.