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.

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16 thoughts on “August 25, 2014 (Mon) – Clickety Clack…Clickety Clack…

  1. Hello Craig, I have begun to follow your blog and pass my hopes and prayers from Ron to you. It is my deepest wish that you reach even greater success than my husband did and to show the world that it can be done. As for the Lovenox injections, one thing we found was to hold a small lunch bag of ice on the injection site for about 3 to 4 minutes afterwards and it kept the bruising down to a minimum, otherwise Ron ended up with what they called a heparin stomach which meant black and blue. Even though Ron lost his battle almost an exact year ago, he still always considered himself a survivor and one of the luckier ones to boot. Best Wishes, and keep up the good attitude.

    Reply
  2. What great news on the tumor retreat! Now you just have to dissolve the DVT and PE – acronyms don’t scare me, I was a nurse for 20 years. And stay off that skateboard, too! But seriously, happy, happy, happy, days.

    Reply
  3. That’s awesome Craig! Here’s to the A Team and your amazing constitution! As for your blood thinner, I will completely understand if you start walking around in a football helmet and pads.

    Nikos

    Sent from my VetPhone

    >

    Reply
    • Hi Craig,
      Fight on! Just in the neighborhood pool with a girlfriend who is a Stage 3/4 lung cancer survivor and we know it can be done! Hang in there, QB. (Football quips as USC puts an amazing one on the scoreboard.) Sorry, if you’re not a Trojan-ite.
      Lee Ann called me today, and we are committing to pray for you daily (she’s been at it every day — praying for me to walk again and for your recovery) and now I’m joining her and others to tackle your situation. No worries about Montreal — another time. We’re on your team, so go to it! Here’s a good play: “I can do all things through Christ who strengthens me.” Phillipians 4:13 ~ Looking forward to more blogs!
      Blessings,
      Sheri
      (Schneekluth)

      Reply
  4. EGBOK – yes, indeed! What a great report. As for the challenges of twice-daily stabs…AFOG.
    Another f#@*#ing opportunity for growth!

    Reply
  5. Wow, the clot issues have been scary, and it’s disappointing how they and the blood thinners will limit some of your activities. But as you an your friend say, EGBOK — the incredible news from the oncologist is a perfect sign of that, as is your resilience and ongoing sense of humor throughout it all. I so love reading about how you’re doing and will continue keeping you in my prayers — I also wish you luck with avoiding the dishes. 🙂

    Reply
  6. Great news Craig. We just got another grandaughter. 4 grands now. Lots of good stuff to look forward to. Keep up the good work. Your in our thoughts and prayers.
    Martha in iowa

    Reply

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