February 18, 2016 (Thurs) – When it Starts to Go….

image…it really goes fast.

I wish I was referring to my bladder or bowel functionality as that would be a good thing to go fast.

So obviously I’ve set the tone, and probably weeded some of you out with TMI, but trust me – it will get worse, so be forewarned.

Let’s start with the results of my PET scan from the 5th. I’d prefer to skip the report entirely but I gotta step up to the plate. Bottom line, the results stunk. I was not surprised in the least based on how I had been feeling. Essentially it shows the chemo treatment I’ve been on since early December has done little to nothing to help. Prior areas have progressed (still hate that term) and lots of new locations have popped up. So we have stopped chemo for now.

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Before we go any further, my 3-year Cancerversary just slipped by (on lucky February the 13th) so Happy Anniversary to  me. The odds were quite a bit against me reaching this far so the fact that I am typing this blog is a testament to science and to the incredible support I’ve had from family and friends. Thank you!

imageLast week I realized that I had not been staying hydrated so on Friday afternoon I started loading up on liquids and continued this through Saturday. I started really getting bloated and on Sunday we realized that I had not urinated in two days (warned you about TMI. Bail now if that bothered you because it’s about to get worse).

imageSo we went to the ER (4th time in two months and on Valentine’s Day – of course) and were greeted with hugs and kisses because they had missed me. Not really but I’m sure I was recognized. Turns out I definitely had some kidney failure happening. So of course, how do they empty a full bladder when the patient can’t do it on his own? You get catheterized. I keep thinking of of the word cauterized but that would have been a whole lot worse, especially if we are talking the same body part.

If you don’t know what a catheter is or how it works, click here, otherwise this won’t make sense, but even I have too much modesty to describe the procedure.

imageYou all know how much luck I have with with needlesticks, and multiple attempts are often required. Drum roll please. You guessed it. However, multiple catheter insertions is not want what you want, especially if you are a guy, so when during the first attempt, being done by a female nurse of course, I hear an uh-oh, my heart sank and my pulse raced. Knowing I was going to have to repeat the procedure sent shivers down my spine. Apparently they did not have a catheter long enough or wide enough to accommodate me. That’s my story and I’m sticking to it.

So, it is now Thursday and I am still in the hospital, leaving tomorrow as it stands now. So that will explain why this post is mainly text. It’s so much harder doing this on an iPad. And what is the worst part that I have had to deal with, all things considered?

These damn hiccups.

I’ve had them on and off for a couple months now and they were mainly an annoyance. But about a week ago they came on full steam and have been mostly full time. Not fun. They’ve tried two different drugs to knock them down but no such luck. Another thing I have to live with I guess.

Unfortunately, when I leave the hospital, I will need to take my cath buddy home with me. They want all my functions to kinda settle in a bit before they remove it, otherwise we run the risk of having a 3rd attempt. No-thank-you-very-much. I have also been on oxygen most of the time I’ve been here. We will see if I need to continue that at home. I was also on heroine, er, morphine, because of the pain for the past few days but they are weaning me off that onto something not at all potentially addictive (yeah, right) – hydrocodone (Vicodin).

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Where does that put me? I was supposed to leave this coming Monday for my visit to Boston to look into that drug trial. Right now I do not see that happening under my current status. So I will be contacting them today to get more information on my options. The other (last?) option if Boston does not pan out for one reason or another, is switching to a different chemo cocktail that includes the immunotherapy drug, Keytruda. None of my onc-docs are very optimistic about its potential benefits, plus it will eliminate my eligibility for the trial, so I need to be sure that is what I want to do. But I also don’t want to go too long before I do anything because we know what’s going on in there, so doing nothing is essentially signing me up for hospice care. Hopefully I can emulate my wife’s uncle who was in and out of hospice multiple times over 10 years. While I’m sure that is in my future, I don’t just want to throw in the towel yet either.

I should know better in 7-10 days so keep an eye out for another update. I may have to have my daughter guest-write my next post,  depending on my status at the time. However, you may like her writing style better than mine so I need to be careful.

Returning to work looks even more iffy at the moment, but we will cross that bridge sometime in the near future.

Business no longer usual. But always day at a time.

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January 25, 2016 (Mon) – Groundhog Day, Revisited…

Groundhog DayThose of you that are fans of Groundhog Day, the Bill Murray movie, will get many of the upcoming references. If you are not a fan, or even if you are not familiar with this US-made movie, you’ll probably be scratching your head. But click here if you want a quick synopsis before I totally lose you.

Suffice it say, reliving the same day over and over (in his case for many, many years) is the general theme of the movie. Neverending stairsKinda like the instructions on a shampoo bottle: “lather-rinse-repeat.” Never-ending. This has also been the general theme of my life of late, although in my case for only 6-8 weeks or so. One of the differences is that Phil Conners starts off as an assh…er, jerk, and slowly comes around. Hopefully I Circle loopdidn’t begin that way. Plus, I won’t be buying any whole life insurance policies from Ned Ryerson, or anyone else for that matter. Somehow I don’t think I would qualify at this stage. And no, I am not an expert ice sculpturer, speak French, nor play jazz on the piano. But I do wield a mean remote control that I am gaining additional expertise on every day.

Leather ReclinerNow my recliner definitely has permanent butt cheek marks embedded in the soft leather. This is a result of spending about 95% of my waking hours, day in and day out plopped accordingly. Each day I wake up to the hope that things will have changed and that I will feel incrementally better to where I can begin to get out and around a bit more. And C squaredthen I get up out of the recliner to head back to the bathroom and run out of breath. Unfortunately that is about the extent of my energy level which is being affected by the big C, or the big C plus the other C (chemo). Some days it feels like they are ganging up as C-squared. Hopefully one of these days the 6am “I Got You Babe” alarm will change to “Happy” and things will fall into place as they should.

I have been able to get out on a not-so-regular basis to walk laps around my cul-de-sac. I don’t do so well with hills soWalk cul-de-sac I am sticking to flat terrain. Talk about Groundhog Day, going around the same block lap after lap. However, don’t let it be said that I allow myself to get locked into such a tight regimen. Occasionally, now don’t faint, I shake things up by, ready for this? – turning around and walking in the opposite direction. I know, I’m just a risk taker. Here was my pattern after one day when I really pushed myself for over a mile. Click on the picture for the incredible full effect.

One of the regular daily occurrences is that my buddy Mr. Nausea, seems to want to be my best friend and hang out in the Lurking in the shadowsshadows everywhere I go in the house. Kind of like our dog Bill who follows my wife everywhere. Just when I think I’ve lost him, he taps me on the shoulder and says, “eh, not so fast buddy.” Funny how (OK, maybe not funny) the day of and the day after my chemo treatment seem to be the best days. Mr. N doesn’t seem to join the party until a few days after, and then like any unwelcome guest, never seems to know when to leave the party. I can deal with him but it’s the lack of appetite that seems to follow him around that is more of a challenge. I’m still struggling to at least hold my weight steady, even at 30 lbs less than normal. But forcing myself to eat seems to bring Mr. N out of the shadows and in my face. It’s a delicate balancing act.

DraculaA week ago when I had my regular blood work done just prior to my chemo, the onc-doc was going over the results. He asked me if I had been bleeding a lot somehow. Despite being on Lovenox and susceptible to bleeding, my answer was a negatory. Apparently I was a quart low Blood drawand anemic. I’m guessing Dracula was sneaking into my bedroom in the middle of the night for a little snackie-poo. So, they arranged for me to come back the next day (now two days in a row) for a blood transfusion. Never had one of them puppies. They had to cross match my blood to be sure I wouldn’t reject what they were going to give me. BC (before cancer), I used to donate blood regularly and I was up to about 8 gallons total. I guess it was about time to get some of that paid back. Unfortunately they must have had a donor with regular headaches because that has been added to my daily regimen ever since.

On the good news/bad news and good news but bad news front, I contacted Massachusetts General Hospital in Boston regarding the EGF816 clinical trial they have going on. Initially with my history they feel I might qualify for the trial and have invited me back for a consultation Boston snowwith the onc-doc running the program. This was the same doc I was trying to get my insurance to cover to visit for a second opinion, which they denied. So now, because of the trial, I get my free consult whether or not I end up in the trial. So that is pretty darn good news. The bad Boston flynews is that it is in Boston. In the winter. The other bad news is that I am not quite travel capable right now with my energy level but I am hopeful I’ll be able to at least build up enough energy for the trip and try and time it so they are not getting 2 feet of snow. Possible good news is that I might qualify for the trial. The bad news? You guessed it. It’s in Boston. And if I qualify, it will mean many trips out there for the duration of the trial. Guess I got spoiled with my last clinical trial being only 20 minutes driving distance away. I wonder if the airlines offer discounts for bulk purchases?

GlowbodyNow halfway through my 6-cycle (once every three weeks) chemo treatment regimen. And I have my glow-in-the-dark PET scan scheduled for Feb 5th, the day before my birthday. We’ll see what that shows. And the week following that will be my 3rd Cancerversary Celebration. Lots happening. Oh, and probably with my next blog, I’ll be posting a link for those of you that want to support Team Craig – Get Fuzzy again this year at the Breath of Hope Walk, either by walking and/or donating to support The Moores Cancer Center. Stay tuned.

Definitely business as usual for now and assuredly day at at time.

December 20, 2015 (Sun) – Yippie Ki Yay – What a Ride

Throwing riderThose that know me really well would certainly not classify me as a huge fan of country western. Sorry Courtney. But just not diggin’ the twangy parts. The rest, not so bad.

But as I was trying to come up with a theme for my very overdue blog post, I could not get the image of a rodeo cowboy riding a bronco, especially to describe the last 6-8 weeks or so.

Unfortunately this wild ride has been anything but fun. And you’ll understand reading below why this blog post will be more of just a short health update than any deep philosophical blog endeavor like most of my posts. Yeah, right.

LCAM all whiteBack in early November, yes, that’s how long it’s been since my last personal post, we were in the middle of Lung Cancer Awareness Month. Unbeknownst to me, my wonderful Rotary club conspired to have as many of our members as possible show up for our luncheon all wearing white in honor of the occasion. Here’s an awesome shot of that day. What an amazing group of people.

Back on November 11, I began a 15-day course of radiation to my pancreas. While I had little difficulty handling previous radiation treatments (brain, lung, hip, sacrum etc.), they warned me that this would be different. Boy, they were not kidding. It started ominously as I had to switch to another hospital for the treatment because my regular radiology center could not get me in for two weeks due to “staffing issues.” And three days into treatment Radiation symbolat the other location, I showed up one morning early and waited and waited. Eventually they came out and told me there was a technical issue and they were not sure when the machine would be back up. The technician even went as far as to tell me she wasn’t sure if the problem was a technical problem or just “operator error.” OK, that just instilled an overdose of confidence in the process. I came back later in the day once they got it figured out. Of course deja vu struck the very next day with the exact same scenario. Finally, because of the Thanksgiving holiday, one of my treatments was on a Saturday to make up time and the unfamiliar technician was working solo because of limited staff. No big deal until after the procedure when she asked me if the machine had sounded “normal.” Apparently she wasn’t as familiar with the machine being used and couldn’t remember what it was supposed to sound like. Wow.

Joachim Alcine, of Canada, lies on the canvas after a sixth round knockout by Daniel Santos, of Puerto Rico, during their WBA light middleweight title fight Friday, July 11, 2008, in Montreal. (AP Photo/The Canadian Press, Ryan Remiorz)

Finally I finished my 15 day course and what can I say? It. Knocked. Me. On. My. Butt. I was warned about the side effects, especially nausea and loss of appetite but little did I know what was in store.

My last radiation treatment was on December 2nd and I began my first cycle of chemotherapy a week later on the 8th. Because the after effects of radiation can hang around for several weeks, it was difficult to separate out what symptoms were being caused by what.

ERSo in the last few weeks I’ve been to the ER twice and the main hospital twice. The hospital visits were planned with the lung biopsy one day and a chemo port installation just this past Friday. The ER visits were not on the agenda as you might imagine. The first was near my final radiation treatment when I was experiencing increased shortness of breath. Although I am on Lovenox blood thinner, there was a minor chance I might have developed another pulmonary embolism. However, all tests came back OK and it was just chalked up to everything that my body was being put through. The other ER visit was due to some major plumbing issues. Eventually it all worked out. And for your benefit and mine, that is all I’m going to say about that.

No foodAs for the challenges, I not only didn’t have much of an appetite, I had an anti-appetite where even the thought or sight of food started to make me nauseous. Hmm. Maybe I’m pregnant. There was a span of almost a week where I ate virtually nothing other than a fruit smoothie my wife made up. We even doctored it up with some appetite enhancing ingredients that I may have have partaken of 45 years ago in college. Had some limited success. But overall I’ve lost 30+ pounds in the past 8 weeks. Good thing I saved my “skinny” clothes. My wife is a wee bit jealous.

But now two days after my port placement, I have turned a tiny corner not having barfed for three days. And for the past two, I have actually eaten solid food with my goal of increasing my intake just a little more each day. So far so good. However, I am still extremely weak with most of the day spent on my recliner. I even had to borrow a walker for the hospital visit Friday which entailed about a 150 foot walk. Yesterday I walked to the end of our driveway and back twice. Small steps. Tomorrow it will be an entire loop of our cul-de-sac. At least that is the goal. Small steps turning into bigger ones.

So, right now I am much better than I was just less than a week ago. My next cycle of chemo is on Monday the 28th. At least now I have a port they can use instead of using my arms as dart boards to find a vein. The intent is for the chemo to hold things at least in check until the results of the biopsy come back that might point to some other treatment options whether it be a certain drug combo or another clinical trial.

This will most likely be my last post until after the new year. I hope everyone has a safe and happy holiday season. Here’s to next year.

Business as usual. Well, maybe not at the moment. But definitely – day at a time.

Profiles in Lung Cancer – Day 12: Karen Loss – “I am living with lung cancer, not dying from it.”

As you all know, November is Lung Cancer Awareness Month. A bunch of us bloggers have gotten together and are profiling a cancer survivor, caregiver, advocate, or health care professional each day this month.

Karen Loss - HeadshotToday it is my distinct pleasure to introduce you to Karen Loss, a lung cancer patient and advocate who was diagnosed in late November of 2012 with stage 4 carcinoma NSCLC. Here is her story in her own words.

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What is your connection to lung cancer?
I will celebrate my 3rd anniversary since my lung cancer diagnosis on Thanksgiving this year.  When I was originally diagnosed, I was already a nearly 16-year survivor of concurrent primary cancers of the uterus and ovaries.  In January, I will celebrate my 19th anniversary after those diagnoses.  I am currently undergoing my 3rd treatment regimen.  First, I had a combination chemotherapy comprised of Taxol, Carboplatin and Avastin.  That was followed for about 6 months by Avastin maintenance therapy. When progression began again, I was put on my second tier treatment of Taxotere.  After that shrunk my tumors once more, I went off all cancer treatments and stayed off for about 15 months, though I still received CT scans every three months.  The last three scans showed ongoing slow growth in both tumors, but especially in the one on my hepatic dome.  The trend was undeniable, so my medical team and I felt it was time to resume treatment and with a few different potential alternatives to consider, I chose to try Opdivo/Nivolumab.  I have now had four infusions of this drug and have not yet had my first CT scan since beginning this new therapy.  That will happen in the week following Thanksgiving, and I am already looking forward to seeing what it will tell me.  During these past three years, I have never reached NED status, but the treatments I have been given have shrunk my tumors, keeping things well in hand so far.

Describe a typical day
I work full-time at The MITRE Corporation, a large research and development company in the Global Security Services division. In addition to that, I research Karen Loss Channel 8 newsand review new articles, videos and blog postings coming out each day about lung cancer in order to provide daily updates to my Trekking Through Cancerland Facebook page. I also tweet or re-tweet (Twitter handle: @CancerTrek) information about lung cancer on most days as another way to continue efforts at providing increased education and awareness.

Tell us something we’d be surprised to know about you
I published a book of letters about the first nine months of my lung cancer journey as a way to try and provide a personal perspective and hopefully inspiration to those who choose to read it. So far I have distributed approximately 2,300 copies through Amazon.com and its affiliates. Unrelated to lung cancer, I have been sponsoring children in foreign lands through Compassion International for nearly 16 years and have traveled to meet them and learn about their lives, the things they are receiving through the Compassion program, the culture of their countries (Haiti, Colombia and Ethiopia) and simply to love on my kids.

Karen Loss - w TJWhat do want us to know about lung cancer?
I want people to know that everyone with lungs (thus EVERYONE) is vulnerable to lung cancer, but that no matter what may have caused the disease, every person deserves care and compassion. Plus…the great strides in lung cancer research are providing greater hope for patients with each passing day.

What brings you hope?

Seeing stage 4 lung cancer patients on TV commercials and interviews, in documentaries, in magazine articles and blog postings, at conferences, really anywhere they have the opportunity to share with others that they are living their lives. My motto is that I am living with lung cancer, not dying from it. One day, hopefully in the foreseeable future, may we be able to consider this a chronic disease rather than a terminal one…

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Thank you Karen!

Read yesterday’s profile by blogger Samantha Mixon of Kelly Shannon here. Tomorrow’s profile of Diane Legg by Linnea Olson will be available here.

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.

Business as usual. Day at a time.

November 3, 2015 (Tue) – Time to Get Naked

OK, I know I have your attention right now. Either one of curiosity to see where I take this or one of revulsion wondering what personal picture I might post. Well, getting naked may mean lots of things. But we will address (or undress) these a bit later in the post. That, of course, is assuming the internet and WordPress police did not nix my post because of the title.

LCAMBut first things first. November is Lung Cancer Awareness Month. Oh no, not another cancer awareness month! Well, actually November should be the biggest month because, unbeknownst to most of the public, lung cancer kills more people each year than the other top three cancers (including breast) combined. And each cancer has its own color used in support. White is often used for lung cancer. So anytime you see something white this month, think of the survivors like myself that are battling to stay ahead of that curve. I’m not much of a political activist and luckily we have several other members of our “club” that do a wonderful job at bringing awareness to much larger groups. But please keep this in mind over the course of the month. You only have to have lungs to get lung cancer.

As I mentioned in my last post, we were getting ready to head out for a vacation extraordinaire to Carmel and Pebble Beach about 8 h20151023_094748ours up the coast of California. Extraordinaire does not come close to describing this trip. If I had a bucket list, which I don’t, this would definitely have been on it. Courtesy of my very generous brother and his wife, we stayed in the most amazing place(s) imaginable. Here’s a picture looking up from the backyard from our first stay-over of 5 nights. And a link if you want some more detailed pics and info about this place. Yowza Yowza. Click on it for the full effect.

Oh, bPebble Beachut the trip was not over. Six of us (the “golfers”) moved down to Casa Palmero for the last two nights which made us eligible to play at
Spyglass and Pebble Beach, some of the most awesome courses in the world. Now, I won’t reveal my golf scores because they approximate the thermometer reading in Palm Springs in late summer. But the score did not matter. The courses were what matJacuzzitered. And being with family. Just amazing. As for the accommodations, they were just absolutely top notch. We had a continental breakfast each morning delivered and set up as evidenced here. And we even had our own private backyard (with 9′ wall) with Jacuzzi. Perhaps that Pebble Beachis where on20151027_083434e of the references from this blog title comes in. I’m not telling. Suffice it to say, it was a trip of a lifetime.

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Now, on to more serious biz-wax.

This past Friday I had my double-your-pleasure combo of a brain MRI scan and PET scan. Got the results late in the day. The good news is that my brain MRI seems to indicate a fairly stable situation. Ta da. And the tumors in/around my lung continued to progress at a slow rate. So, that’s sorta OK news. But this is shoe-droppingwhere the other shoe dropped. And dropped like a size 20. The lesion (tumor) on my pancreas skyrocketed to over 7cm. That’s centimeters, not millimeters. The official write-up has it as “dramatic increase in size and metabolic activity of 7 cm pancreatic/peripancreatic mass.” No cancer patient likes to read the words dramatic increase. That equates to about 2.75″ for those of us not on the metric system – not quite the diameter of a baseball but coming close. Plus there is another “new nodal metastases lateral to the left psoas muscle in the upper pelvis, measuring 4-5 cm.” That came out of nowhere since it hadn’t shown up before. Needless to say this report was a bit of a sucker punch in the gut. And it explains the increasing pain I’ve been seeing in my upper gut that is currently only held at bay with increasing doses of Vicodin.

Knowing thospital_gownhat we would have the results in time, I had scheduled a meeting with the lung-onc specialist at Moores yesterday so that we could go over the results and chat about options. Bottom line: I will be leaving the AZD9291 trial shortly. First, they are scheduling a new biopsy to do all of the genetic testing for markers and “expressions.” And immediately followed by, yes, more radiation treatment, this time to my pancreas and left psoas muscle. The day before radiation treatment begins, I will chug my last A-team pill. So “going naked” means, for one, going without any oral cancer medication for the duration of the radiation. It also refers to my
state of dress, or undress, during said radiation treatments. As I’ve indicated before, I lost my modesty long ago.

As for what follows the radiation treatment, that is up in the air a little since there really are several options. There is another clinical trial (EGF816) going on in Boston and NY which we are seeing if I qualify for. There is also a combination of Opdivo (nivolumab) and Tarceva (erlotinib) which may work, but the chances of expressing the PD-1 marker is fairly low in a non-smoker and Opdivo works much better in smokers/former smokers. And choosing one of the drug options will eliminate my possible entry into one or more clinical trials. It gets pretty complicated trying to lay all of this out. Although I am in search of a second opinion, right now I still have confidence in my doc. As she indicated, my first two courses of treatment (Tarceva and AZD9291) were slam dunks as the right option at the time. We are now in somewhat of uncharted territory and there is no absolute right answer. My onc still is leaning towards starting off with chemo (carboplaxin and pemetrexed) which is given once every three weeks in a 2-hour infusion. If that fails to help, we can always come off that and try one of the other options. But things may change over the next 10 days – stay tuned.

So I’ve been on two trips recently. One from a bucket list and the other just about the opposite. Perhaps it rhymes with bucket? 🙂

But I sCraig and Kim at Rotary11032015till have options and new drugs are coming out fast and furiously. Just doing my best to stay ahead of that tsunami.

And, as always, my wife has been right by my side the whole way. I just have to end on this picture.

Business as usual. Day at a time.

October 4, 2015 (Sun) – Road, Meet Firestone

For those loyal readers that have been with me a while, you may recall my blog post last Spring about chameleons. Well, today we diverge from lizards, itsy bitsy spiders, elephants and any other animals/insects I may have used in the past. Yes, I know a spider is not an insect. But technically it is an animal. I do work in a science museum dontcha know.  No today, boys and girls, we learn about rubber. And by rubber, I do not mean that we are having the “talk.”

Burning rubberThe rubber I’m referring to is that the material that covers wheels and comes in contact with pavement. One of the online dictionaries defines rubber meeting the road as “at the point in a process where there are challenges, issues, or problems.” When push comes to shove. When the petal hits the metal. I’m sure there are other metaphors but that should suffice. Unless you are not from the US and don’t understand our crazy idioms.

After meeting with my lung-onc-doc to discuss my glow-in-the-dark PET scan results, here is where we stand. Since my right hip was the only area of my body that was giving me any physical grief, it was decided that I should start a radiation series to take care of the two spots that popped up there. Problem being, one of those spots is the same one that I had zapped almost two years ago. So they need to tread lightly and spread out the treatments over 3 weeks with a lower dose to lessen the risk of permanent damage to the bone in Radiation machinethat area. They opted not to nail my left hip since it was not bothering me at the time and it would increase the risk of anemia. So this past Thursday, I began my first of 15 (actually 14 – more on that later) zappings to fry the fuzzies in that area. I’d include a picture but it would be r-rated. So I’ve included a generic one that is pretty close. I was disappointed that I didn’t get any new tattoos as they were able to use the old ones that were still there. The plan, since I had no other symptoms, is to remain on my A-team (AZD9291) drug until the end of this month when I have another set of PET/MRI scans. Hey, I have an idea. Perhaps I can hire the VW software engineers to tweak the PET software so that my scans come up clean. Whaddaya say?

Backing up (that’s a pun, but you won’t get it for a few sentences), I have never felt well ever since returning from SF with that nasty cold. AmoxicillinThe doc prescribed some Amoxicillin (yes, the pink stuff you gave your kids for ear infections) since I was experiencing symptoms of a sinus infection. This past Wednesday, I had to leave work early because I was feeling so, er, here we go again: crappy. On top of it I was developing some stomach discomfort. Aaah! Could it be cancer that showed up in my pancreas giving me a wake-up call? Could it be an ulcer? Could it be a side effect of the Amoxicillin? Could it be constipation? Could it just be a friggin’ stomach ache?Stomach pain

So, I know several co-workers and even a couple board members read my blog, so if you prefer not to feel awkward the next time you see me, you may want to skip the next paragraph. Fair warning.

I took Thursday and Friday off work as I couldn’t get off my recliner. As the stomach issue seemed to be getting worse, my doc prescribed some laxatives to help, er, eliminate, one of the potential causes listed above. Now you get my pun about “backing up.”  And yet the stomach discomfort never really went away. And of course, now my left hip is giving me some discomfort so I am limping like an old man with two bad hips. I know, I know. I am an old man. But some of the pain could be from just sitting on my rear end now for 4 full days. I’m surprised I don’t have bed sores. I tried getting off my duff to walk around our culdesac but I barely made it one loop and had to quit due to fatigue. Now that is feeling old. I find myself getting jealous of anyone doing anything washing-machineeven slightly athletic.

Oh, and I must have rubbed off on our 19-year-old washing machine as it crapped out over the weekend as well. OK, cue the violins. However, getting you to feel sorry for me was not the intent of this blog. Just keeping you up-to-date. And notice I didn’t say cue the harps. We are a long ways away from even thinking about that.

Unfortunately, (oops one more whine – bear with me), because of the radiation treatments, I will have to forego my trip to Chicago next weekend for the LVNG With Ambassador training. Bummer. Don’t think I’d be up to it in any case. Right now I’m more concerned about being able to make our upcoming vacation to Carmel/Pebble Beach. My radio-doc is cutting down my radiation treatments by one day so I can head out on this road trip the day after my last zapping.

kfcIn the midst of all this, I have totally lost my appetite. In fact I have an anti-appetite where just the sight of food makes me gag. Hey, maybe I’m pregnant. So my wifey, my wonderful wifey, brings home KFC (Kentucky Fried Chicken) figuring that if I will eat anything, I’d eat that. Having her sacrifice to stop by such a verboten place is like asking a vegan to stop by the meat market for some fresh steaks. Of course, I couldn’t even take a bite the night she got home. Me not being tempted to eat fried chicken is like Trump avoiding cameras. Never happens. I was able to force myself to make a decent dent in it the next day but overall I’ve lost 5 lbs in a week. My doc is not going to be happy. But my pants thank me.

I was also asked to tell my story for the CancerCommons website so if you are somewhat new to my blog, here is a decent short summary of my journey up until recently.

Stay tuned as things could be changing in the next few weeks.

Business as usual. Day at a time.

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.