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.

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

  1. Such stress added on to all the other stress when every second you wait for results feels like an eternity. I hope your Doc and Staff sharpen up……very best of news when it does come…..so glad you enjoyed the gorgeous wedding of your daughter..what a celebration!

    Reply
  2. Congratulations on Bradyn & Monte’s marriage! What a joyous & fun wedding weekend! Will continue to think healthy thoughts; sending lots of love & positive energy your way. Keeping you in our prayers for good news on Friday re: moving forward with a treatment of choice. Hugs to you & Kim.

    Reply
  3. Wow Craig. I have been looking everyday for your results. I’m getting impatient myself so I can imagine how y’all are feeling.
    My husband has a good report a week ago. Good bit of shrinkage. But now his appetite is out of whack. Everything tastes bad. Having fun time emailing nurse. She just tells us to go to er. We are 1.5 hours from univ of iowa.
    Looks like a nice wedding. Hopefully things will turn around quickly for you.
    Martha

    Reply
  4. Congratulations on your daughter’s wedding! The patience you are showing regarding our health care system is remarkable! I certainly would have had some chosen words to share with your physician and staff, as well. No excuse for poor health professional to patient communication !! Hang in there Craig…good thoughts and prayers abound.

    Reply
  5. Hoping treatment gets back on track soon. I assume clinical trial treatment would have protocol that protects a patient from neglectful oversight by the doctors administering it??? So sorry this is adding to the stress of your diagnosis.
    Kit and Caboodle is a phrase I use often with family young ones so it doesn’t fade away–they like it.
    Congrats in having a another son in the family–lovely couple!

    Reply
  6. Congratulations on Bradyn’s and Monte’s wedding. I’m sure the day was perfect, and full of wonderful memories. I certainly hope the labs get the “show on the road” and your treatments to conquer this beast can continue. Thanks for your sense of humor, you all are in my thoughts and prayers.

    Reply
  7. I’m glad you were able to go to your daughter’s wedding. And what a mess with your medical teams!! I’m fortunate that has only happened to me twice in the 8 months I’ve been dealing with my oncologist’s office. Good luck getting the results and getting into the trial.

    Reply
  8. Craig,

    It was great to see you at the softball field a couple of weekends ago! You look great! I’m also proud of you for using the word exacerbate in a sentence. Keep up the fight and communication level with your doctors!

    Reply
  9. Thinking of you. So happy the wedding went well. I’ll be looking for more photos! And for your next blog with positive news!

    Reply

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