September 19, 2015 (Sat) – The Drought is Over

DroughtIf you are living in Southern California as I am, you are probably saying to yourself, he’s full of cr*p. Well, apparently I am. But we will get to that in a minute. No, the recent downpour we received helped, but in no way way made much of a dent, in our water shortage. However, the ending of the drought I am referring to is a different breed and falls in line with other negative but positive sounding things we cancer patients can’t get used to like “progression” and “enhanced.” Or if you’re a guy, a word like “enlarged.”

Beep, beep, back up the truck.

Last you heard from me, I left you hanging with all of my scan tests the day following my last blog posting. Well, as luck(?) would have it, I dont-leave-me-hangingwas able to get my brain MRI done but as I was getting ready to head out for my PET scan, I received a call. The PET machine was down and they would have to reschedule. And this after I sacrificed all day the day before in not eating any carbs. And that is a big sacrifice for moi. Unfortunately I was leaving for the Bay area for a week the next day and had to reschedule the scan for this past Tuesday after I returned. Carb-free again all day Monday and no eating at all Tuesday until my scan at 1pm.

stability-in-lifeFirst the (mostly) good news. The brain MRI that I had back on the 4th showed that “the 8-9 mm ring-enhancing metastases in the superior cerebellar vermis is stable.” Yea! We cancer-types love the word “stable.” But of course it was tempered later in the write-up by something new: “a questionable focus of enhancement involving the subcortical anterior right temporal lobe.” Couldn’t leave well enough alone, could they? So this will be something they watch for on my next scan in October. Small stuff.

Green checkAs for the radioactive sugar-juice PET scan, my shoulder showed no seismic, er, metabolic activity indicating that my frozen shoulder is just that – a frozen shoulder. No fuzzy hiding in the tundra. So maybe with enough rehab, I can return to the softball diamond. Sorry guys, you may get me back after all one of these days.

As for the remainder of the PET results, this is where the drought ends and me being full of cr*p begins. This itsy bitsy spider got thoroughly soaked by an Full of crapearly El Nino. In addition to the eight known problem areas in and around my lungs, four newbies popped up. My pancreas, my left hip wing, my pelvis area and my right upper thigh/femur area all lit up like those Christmas LED’s I was hoping to avoid. Overall the term “intense metabolic activity” was used no less than 6 times in the write-up covering about 12 total identified locations. Although this may not be PC, I’m beginning to feel a bit like General Custer. Yet, I still have a lot more weapons in my arsenal than he did.Body spots

As it stands now, I have yet to discuss these results with my lung-onc specialist at Moores Cancer Center as she was out of town at the end of this week. I’ve been putting together a list of treatment options and other drugs/drug trials to quiz her about that might come into play. Yet from prior conversations with her, I suspect she will recommend chemotherapy. However, I may have some directed radiation treatments in my hip and upper thigh areas first. The latter area has been bothering me for a few weeks, but true to form, I thought it was from an injury from trying to leg out an infield grounder. Nyet. So I am hoping a quick zapping of that area will address that one spot as it did when I last had hip radiation. But this is all supposition at this point because I need to have that conversation first.

To add insult to injury, I picked up a nasty cold while traveling and this past week has been a challenge feeling crappy and at the same time finding out that I am full of it. Had to forego my long anticipated and planned volunteer stint this weekend at Camp Ronald McDonald for Good Times as I knew I should not be around kids with compromised immune systems while I had a bad cold. One of these days I will make it back there.

I also, over the past several weeks, had noticed what appeared to be an edge of a tooth poking out through my gum sideways near where my wisdom tooth would have been if I had any, which I don’t. When I mentioned this to my lung-onc-doc, she became very concerned since being on Zometa increases the chance of developing osteonecrosis of the jaw (ONJ). Although I went off Zometa a few months back, apparently the half life of that drug in your jaw means that there will be residue for a long time. As for what ONJ is, you really don’t want to know. And you really do not want to Google-image it since you will ruin whatever meal is next on your agenda. And there is no cure. Lovely. Keeping my fingers crossed that there is no correlation to my alien tooth and this nasty affliction.

I saw an ortho surgeon who removed the edge of the exposed tooth so it won’t bug me any longer and I will be seeing him in a couple weeks to keep a close eye on it to be sure no infection sets in.

Netx PhaseSo we now enter a new phase in my journey, whatever it is. This is certainly the biggest challenge I have faced in the last 2 1/2 years of treatment. But even if I jump into chemo, the hoped-for result would be that it keeps the fuzzies at bay long enough until there is another new drug or treatment available to switch to. Just staying ahead of the tsunami is what I aim for.

On another note, assuming whatever treatment options are put into place allow it, I will traveling to Chicago in two weeks for training as a LVNG With Ambassador. I know a couple of my brethren that are in their own journeys will be in attendance as well. Essentially we will be offered training on how best to tell our stories and then participate in regional programs as a speaker. Should be very interesting.

So, I wish I had better news overall but this is yet again just another speed bump in my very zig-zag journey. A big speed bump, yes. But just an obstacleFrankenstein none-the-less.

But do me a favor. If you are non-local follower of my blog, please stand up. Now put your arms out like the old stereotyped picture of Frankenstein’s monster. Now wrap them around me for a virtual hug. For those that see me in person, I expect a real one. 🙂

Business as usual. Day at a time.

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24 thoughts on “September 19, 2015 (Sat) – The Drought is Over

  1. Feel my hug!!! I want one back! Good weeks and bad weeks, huh! How is Kim doing? I know it takes me some time to process this type of news.

    So feel the HUG!

    >

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  2. Well, that was a big let down! Can’t begin to fathom what you are going through. It’s great that you’ve created this blog to communicate what’s happening, so we are all with you on this jouney. Big hug!

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  3. I’m from the Deep South. I’ve followed you since the beginning. You just received a huge hug and for extra help, a prayer. Jean

    >

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  4. Our arms are wrapped around you, Craig. Keep up that amazing spirit of yours. It’s your best weapon. Hugs for you and Kim.

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  5. More Big Hugs for you and Kim from me. You are the very model of and engaged patient and I have no doubt you and your onc will come up with a plan.

    Are you still in the trial? If not, I wonder if CO-1686 is a possibility. Some people are successfully using AZD9291 after running their course on CO-1686, and I wonder if the reverse has any promise of helping folks who have run their course on AZD9291. Options will be suddenly wider when these 2 drugs are approved and can actually be prescribed. Soon we hope!

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  6. Craig, so sorry to hear of this change in the lung scan and the other isolated problems.i am anxious to hear of your next step after you meet with the oncologist.
    Hugs to you do as always you remain in my prayers.
    So like you to be upset that you are unable to do your volunteer activities. As always you are an inspiration to us al!

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  7. Definitely a huge hug from me in St. George, UT! Sorry the news isn’t so great for you this time…praying that you can truly stay ahead of the tsunami😎. Just want you to know I’m thinking about you!

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  8. Craig, David and I both give you and Kim big hugs! Hate to see you going through all this but will keep you in our prayers. xoooooooooo

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  9. Hi Craig! I’m a dear friend of Dann’s. He has spoken fondly of you so I want to send you that virtual hug to let you know I’m holding you in my thoughts and prayers as you move through this challenging journey. I know you’ve been a real inspiration to Dann and thank you for that. As you both journey to be ambassadors, know you are surrounded by loving friends💗

    Rebbecca M

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  10. Craig, I am work colleague of Dann Wonser and you have been a huge inspiration for him and all that follow. I am thinking of you and please consider me part of your team! If hugs are the RX of the moment I am all in. Todd C.

    Reply
  11. We both just gave you more hugs. You are in our hearts and prayers, Craig. Give our sweet little cousin a hug for us, too.

    Reply

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