Sunday Reminder

Hi All,

We are so excited to see everyone at the Breath of Hope Walk this Sunday. Fun Fact: Team Craig- Get Fuzzy has raised over $17,000 to fund research at UC San Diego Moores Cancer Center. Amazing!

A reminder to all of those who are joining us Sunday morning: Please wear your red Team Craig – Get Fuzzy t-shirt if you have one already. We will have more t-shirts for those of you who don’t have one yet (first come, first serve!)

Details about the walk and Sunday evening’s service are below:

Breath of Hope Lung Cancer Walk
Sunday, May 1st, 2016 at 9:00am.
Registration begins at 7:30am
Cancer Survivors Park, Harbor Island Park
4100 North Harbor Drive, San Diego

Celebration of the Life of Craig Blower
Sunday, May 1st, 2016 at 5:00pm
Spreckels Organ Pavilion in Balboa Park
Pan American Road E, San Diego
Aloha attire requested by Craig
Reception to follow at the Reuben H. Fleet Science Center

Business as usual, day at a time.

-Bradyn (Blower) Miller

Celebrating Craig Blower

May 1^st will be a special day. We hope to see you at:

Breath of Hope Lung Cancer Walk
Sunday, May 1^st, 2016 at 9:00am.
Registration begins at 7:30am
Cancer Survivors Park, Harbor Island Park
4100 North Harbor Drive, San Diego
Click HERE to sign up; join “Team Craig – Get Fuzzy”

Celebration of the Life of Craig Blower
Sunday, May 1st, 2016 at 5:00pm
Spreckels Organ Pavilion in Balboa Park
Pan American Road E, San Diego
Aloha attire requested by Craig
Reception to follow at the Reuben H. Fleet Science Center

In lieu of flowers, donations (or your time) can be given to the following causes:

• Reuben H. Fleet Science Center
• Breath of Hope Lung Cancer Walk
• Camp Ronald McDonald for Good Times 
• Summerbridge San Diego
• Rady Children’s Hospital
• Rotary Club of San Diego
  • Craig and Doug’s Excellent Science (CADES) Scholarship
    If you would like to donate to this cause, you can send a check to the address below. Be sure to reference CADES on the memo line.
    San Diego Rotary Club Foundation
    2247 San Diego Ave., Suite 233
    San Diego, CA. 92110-2943

If you are interested, Craig’s obituary is below. It is listed in today’s San Diego Union Tribune. Per Dad’s request, I have been (oh-so-rudely) cropped out of my wedding photo to be used for celebration purposes.

-Bradyn (Blower) Miller

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Craig Alan Blower Feb. 6, 1953-March 16, 2016 passed away at the age of 63 in Scripps Ranch, San Diego after battling cancer. He was born to Albert & Sara Blower in Montebello CA, and graduated from Alhambra High School & UCSB.

He is survived by his wife, Kim, children Bradyn Miller (Monte) & Brett Blower, and Bill the dog. He is also survived by his brothers Mike (Sharon), Kirk (Teresa), Brant (Joanne) and sister Janice McCarthy (Kelly) and their families.

Craig served as the COO at the Rueben H. Fleet Science Center in Balboa Park and spent much of his time volunteering in the community. Some of his involvements included Rotary Club 33, Rady’s Children’s Hospital, Summerbridge San Diego, and Camp Ronald McDonald for Good Times.

 

March 16th, 2016 (Wednesday) – Aloha

With great sadness, I announce the departure of Craig Blower.

He passed away peacefully this morning and was very comfortable in his last days.

Thank you for all of your support and kind words. Please raise a glass to Craig tonight to celebrate his inspiring life and to wish him well on his journey.

We will be in touch (via blog and others) regarding future celebrations.

Until then, we will be handling business as usual… one day at a time.

-Bradyn (Blower) Miller

 

March 15th, 2016 (Tuesday) – “No Pity Parties,” he says – From the Daughter

As mentioned in Craig’s last blog post, his daughter (me) has taken over the responsibility of keeping his blog readers updated.

A few days after his previous blog post, Dad went to the Emergency Room with shortness of breath and was admitted to the hospital later that day. Dad’s onc-doc recommended he cease cancer treatment, as any further treatments, like Keytruda, would only make him feel worse, with very little benefit. That includes forgoing the trial in Boston.

When I asked him what he wanted me to mention in his blog, Craig said, “don’t let people think I’m just giving up.” The fact is, he’s already been through all the treatment options, and we are changing gears. As a nurse in the hospital perfectly explained, “we have stopped treating the disease, and have begun treating the person.”

Craig came home to his favorite recliner, under the wing of in-home hospice care and propped up on what I like to call, “Pillow Mountain.” His pain level is fairly low, but the constant sitting caused him to have a sore butt, so we’ve since moved him to a more comfortable bed. He remains surrounded by our family and, of course, Billy Bigdog.

Our friends and family have been incredibly generous with their time and support. Neighbors have run errands for Mom, and we’ve even had a wheelchair and mobile commode loaned to us. Not sure they’ll want the latter one back. (Yes! I got a Dad-approved potty joke into the blog!)

A lot of people have been asking how they can help. We are truly touched, and we are overwhelmed with the generous offerings of hospitality and nourishment.

As a family, we have decided to direct friends and readers to help in different ways:

1. Support “Team Craig – Get Fuzzy” at the Breath of Hope Walk.

You can walk in the 5k event on May 1^st in San Diego, donate to support the Moores Cancer center, or both.

To sign up and/or donate, visit the Breath of Hope Walk website.

Click on ‘Register Now’ and choose “Team Craig – Get Fuzzy” from the drop-down menu as your Team Name.

If you would prefer to donate to the cause, enter your donation amount in the ‘Additional Donation’ box on the registration page.

We hope to see you there.

2. Donate to the Craig and Doug’s Excellent Science (CADES) Scholarship through the Rotary of San Diego.

This Rotary scholarship was formed in honor of my father and his fellow Rotarian, Doug Arbon, who have both done so much to instill the love of science in students. The program is in partnership with Hoover High School.

The mission of the project is to establish an annual, multi distribution scholarship to under-served high school seniors who have shown aptitude and interest in the field of STEM (Science-Technology-Engineering-Math).

If you would like to donate to this cause, you can send a check to the address below. Be sure to reference CADES on the memo line.

San Diego Rotary Club Foundation
2247 San Diego Ave., Suite 233
San Diego, CA. 92110-2943

To learn more about this scholarship, you can read the Project Overview here.

3. Volunteer at (or donate to) some of Craig’s favorite organizations:

Dad has spent countless hours serving others. From leading a pack of elementary school students in science experiments to fixing Nana’s VCR, he has never hesitated to offer his time in order to help someone else.

Below are just a few organizations Dad has volunteered for, if you are interested in filling some really big shoes or donating to their cause.

• Camp Ronald McDonald for Good Times 
• Summerbridge San Diego
• Rady Children’s Hospital
• Rotary Club of San Diego
  • Rotary Readers
  • Roteracts
  • Rotary Camp Enterprise

If Craig has inspired you to serve your community in any way, please share your stories with us. We are so proud of him, and would be thrilled to hear how his legacy is been carried onward.

My family and I personally want to thank each and every one of you for the constant encouragement Dad has gotten through his blog. As a reader myself, the comments have always filled my heart and made my day brighter.

For those of you who are fighting a similar fight, Craig wants you to stay positive. As a family, we remind ourselves that because Dad took part in trial medications, he has been a part of a very special process that will help other survivors in the future. I’m sure Craig would encourage you to do the same.

Business as usual, One Day… we will find a cure.

-Bradyn (Blower) Miller

 

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

…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.

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!

Last 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).

So 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.

You 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).

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.

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

Those 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. Kinda 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 didn’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.

Now 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 then 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 so 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 shadows 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.

A 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 and 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 with 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 news 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?

Now 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

Those 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.

Back 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 at 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.

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.

So 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.

As 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 27: Dave Bjork – “It’s all about relationships.”

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. Today, with my second profile, it is my honor to introduce you to Dave Bjork, a fellow blogger (http://davebjork.blogspot.com/) and lung cancer survivor. Here is his story in his own words.

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Who is Dave?
I am a lung cancer survivor, and I am a passionate advocate for cancer research and education. Professionally I’m the Vice President of Development for the National Foundation for Cancer Research in Bethesda, Maryland.  In my role I advocate for funding important research projects led by scientists at places like Massachusetts General Hospital (MGH), MD Anderson, Dana Farber and so many others.  Among the researchers that I am very vocal about, and that are supported by my organization in the area of lung cancer, are Drs. Daniel Haber and Alice Shaw at MGH, and Dr. Jin Jen at Mayo Clinic.

What is your connection to lung cancer?
In 1998 I was diagnosed with lung cancer. I was 34 years old, married with 3 young boys age 5, 3 and 1, and I had never smoked. I received amazing treatment at Mass. General Hospital by thoracic surgeon Dr. Doug Mathisen among others. I had a lobectomy to remove my lower left lobe, and was fortunate that there was no spread of disease. I have been forever grateful and am committed to advocating for more research for lung cancer.

Describe a typical day
I continually try to educate people that only about 11% of oncology grants are funded by the NIH, and that lung cancer remains one of the most under funded areas of research. There are amazing and committed scientists doing great work that deserve support. I am very active on Twitter and work hard to advocate for the lung cancer community #LCSM.

Tell us something we’d be surprised to know about you
My wife Missi and I recently celebrated our 25 year wedding anniversary, and we are abundantly proud of our 3 boys Chris (age 23), Mike (age 21) and Pat (age 19).

What do want us to know about lung cancer?
I never smoked, and I hope someday we can finally get past the stigma of lung cancer. I always get asked if I smoked, and it bothers me that people ask me that.

What brings you hope?
I get hope from the research that is being done that is leading to more targeted therapies for lung cancer. And there is hope that we will get earlier diagnosis of lung cancer which will give patients a better chance of survival.

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Thank you Dave! You can follow him on Twitter @bjork5.

Read yesterday’s profile of Christian Nataline by blogger Linnea Olson here.

Tomorrow’s profile of Dr. Alice Snow, also by Linnea, 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.

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.

Today 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 3^rd 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 19^th anniversary after those diagnoses.  I am currently undergoing my 3^rd 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 and 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.

What 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.

But 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 hours 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, but 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 mattered. 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 is where one 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 where 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 that 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 still 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.”

The 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 that 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. The 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?

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 even 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.

In 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

If 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 was 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.

First 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.

As 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 early 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.

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.

So 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 obstacle 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.

September 3, 2015 (Thurs) – Christmas in September? Let’s Hope Not.

I may actually beat Target and Costco to the punch in mentioning the “C” word (Christmas, not cancer) this early in the season, and especially before Labor Day. And I’m sure there are people who would appreciate having Christmas come early. I’m just not one of them, for reasons described momentarily.

I just realized that I haven’t posted a blog in over a month. Wow. Been crazy busy at work so I guess that’s a good thing. My wife may beg to differ but hey, I’m still working full time. Plus some. Beats the alternative.

Last I left you, I was powering down a less-than-scrumptious club sandwich. Well, tomorrow we find out if I need to add another layer of Limburger Cheese. And if a fuzzy IS hiding out in the frozen tundra that is my right shoulder. Or anywhere else for that matter. Because of the uncertainty about some anomaly that showed up on my shoulder MRI, they are opting to go the whole nine yards and switch to a kitty-cat + PET scan this time around. It’s been a long time since I had one of those light-me-up radioactive sugar juice injection procedures. And that is where Christmas comes in. I really am not looking forward to a result that may have me mimicking a brightly lit LED covered (I’m nothing if not energy saving) tree. So getting lit, unlike during my college days, is not a positive thing.

Right now I am having a tough time typing this blog since I’ve been required to go on a low-carb diet all day so that false readings are kept to a minimum tomorrow. I guess my blood sugar must be low as I have a bit of the shakes. I never realized how tough it was for a carbivore like me to ignore the mashed potatoes I had to leave on my plate at Rotary today, the slice of birthday cake I had to pass up on in our office, or the handful of Cheez-its I was almost tempted to grab when I got home. Maybe after all of the tests tomorrow I’ll stop at KFC (that’s Kentucky Fried Chicken for you younger folks) to make up for lost time. OK Kim, just kidding…

Of course, prior to the Geiger counter clicking starting up, I have to have my regular brain MRI to check on Mr. Upstairs Fuzzy. And after those two are a wrap, head on over to UCSD for my every-twelve-week echo-echo-echocardiogram. Somewhere in that scheduling fray a regular blood workup needs to happen. And finally wrapping everything up with my regular onc-doc appointment in the late afternoon where I may, or may not get the results of my tests already. Nothing like getting everything out of the way at once. My luck, I will get the news the next day while out of town. Of course. Those of you that have been on board my fuzzy wagon for a while may recall the time I got the news while sitting on the tarmac at O’Hare Airport. That would be my infamous Chi-Town meltdown. But perhaps I’ll get good news instead and celebrate during my vacation/business trip.

As for my shoulder, I was finally able to get approval for the fluoroscope-assisted steroid injection which I had earlier this week. Although “immediate relief” is a phrase that was dropped a lot as it relates to this procedure, I can’t say that I notice much of a difference yet. We shall see. It obviously doesn’t affect my golf swing as I actually had my second lowest round ever the other day. No numbers are being provided, however, as it really is embarrassing to claim what I had was a “good” score. But hey, I’ll take it.

I just realized that this whole blog has been a medical update. Yeech. Somebody slap my hand, will you? Or better yet, slap me upside the head. Maybe you’ll nail my fuzzy.

After all of the junk above, I must say that I am still feeling very good. My hips were giving me a bit of grief but that was self-induced and have mostly resolved themselves. My shoulder is still a question mark but overall I really cannot complain.

Off to see my sister-in-law perform this weekend in Berkeley. It will be a bit of a reunion with several family members meeting up for the event. Plus I will get to spend some quality time with my daughter in San Jose over the Labor Day weekend. Can’t wait.

Last but not least are the results of our third major remodel. Here are some pics (before and after) of our new master bath. My designer wife, who teaches PE, missed her calling.

Business as usual. Day at a time.

July 27, 2015 (Mon) – A Triple Decker of Tasty and Not-So-Tasty Morsels

My wife knows I love club sandwiches. She will invariably guess correctly when we go out to eat at a casual restaurant if a club sandwich is on the menu. What can I say? I like predictability and knowledge that I will enjoy all ingredients included in said sandwich. Call it comfort food. Or call it a boring husband.

Yet, my journey to date has been anything but predicable. Hopeful yes. Predictable? Not usually.

Thus begins my quickie (don’t go there) summary of my most recent triple decker sandwich, aka my set of 3 scans last Friday. Unfortunately not all ingredients were mouth watering. Smacking my lips and gagging at the same time – now that’s a lunch entree that would result in a nasty Yelp review.

Let’s start with the bacon: My brain MRI came back, once you got through all of the medical gobbledygook, as “No significant change right cerebellar metastatic focus when compared with most recent exam...” Obviously not written with proper grammar in mind but I will forgive the transgression this time. Bottom line: upstairs fuzzy is hibernating, hopefully like Rip Van Winkle. Yea!

Now mix some castor oil with pureed Brussels sprouts. I had no idea there was an “s” on the end of Brussel, did you? Squirrel!  In any case, make a nice paste with those two ingredients, perhaps add some Vegemite for texture and spread on your sandwich. That would be my kitty-cat (CT) scan of everything else. Again, skipping over the impossible-to-decipher technical jargon, here is what you get: “Progressive malignancy in the lungs and mediastinum. Suspect enlarging renal metastasis.” That’s where the gagging kicked in. But I was mentally prepared based on recent history and had my virtual barf bag handy. So no cookies were actually lost in the process. Bottom line: same ‘ol, same ‘ol story when compared to the scan results for the last 3-4 scans. Continued growth in the fuzzy boys below my noggin.

Finally, layer some Limburger cheese with anchovies and sprinkle some ground up ghost peppers (those that know, know) for good measure and you have completed my meal. Some of you might actually like this. Yeech. This last set of ingredients comprised my third scan – my shoulder MRI which, when chewed up and digested down to words I could understand, came out like this: “Magnetic resonance imaging of right shoulder demonstrates features (‘features?’ Really?) of an active inflammatory phase of adhesive capsulitis. Nonspecific focus of signal hyperintensity and replacement of fatty marrow within the coracoid process possibly reflecting a metastatic focus given the patient’s history of lung cancer. This focus may be mildly sclerotic on CT. Stress remodeling of the coracoid process is thought to be less likely.” Bottom line: Looks like I have a case of “frozen shoulder” which will probably be treated by an ultrasound guided injection of steroids directly into the achy area. Then most likely continued home PT rehab. Problem being that this may not be allowed under my current AZD9291 (A-team) trial. We shall see.

And if you nuke this sandwich to just charred remains, as I would suggest you do in any case, you may get what is alluded to in the last paragraph as “reflecting a metastatic focus…” So there is a possibility that not only do I have a frozen shoulder, but a fuzzy with a parka is hanging out in the tundra. The plan is to keep an eye on it and perhaps do another MRI on my shoulder after having received the steroid stab. Maybe it’s just an empty igloo. Stay tuned.

Had my regular lung-onc visit today but was seen by a sub since my regular onc was out of town. So, although he was not in a position to prescribe any specific course of action, he was pretty certain that we will be staying on the same route for at least another 6 weeks. He was especially happy that all of the parts he checked out seemed to be in fine operating condition. Obviously he did not check out all of my parts…

Business as usual. Day at a time.

July 18, 2015 (Sat) – Why Me? If Only. And Other Time Wasters

Early in a cancer patient’s diagnosis, the “why me” pops its ugly head. I say ugly because no good comes from asking that question. Some of us quickly get past that futile endeavor while others have a tough time shaking it off. Certainly lung cancer can have some obvious direct causation connections: smoking, long term asbestos exposure, even living in an area with high levels of naturally occurring radon gas. Yet many of us without any obvious causes have to accept the fact that life can be random. Roll of the dice. Luck of the draw. Turn of the wheel. Mutant gene. Who knows? And more importantly, should I care? No. It is what it is and stressing over what might have caused it just takes energy you need to weather the storm.

If only is not any better.

If only I had built a better wall with my cereal boxes when I was a kid sitting at the breakfast table with my smoking parents. I would surround my bowl and duck my head into the enclosure with boxes of Sugar Pops, Sugar Frosted Flakes and Sugar Jets forming a barrier. Now that I think about it, it’s more surprising that I don’t have diabetes with that diet. Yes, those were the actual names of the cereals back then when they weren’t so PC health conscious. I can almost guarantee they have just as much sugar these days but that is a bad word now. But perhaps second-hand smoke from 50 years ago was the culprit.

If only I hadn’t partaken in college. Could that have caused the bad boy fuzzy that sat around for 40+ years and just now decided to rear its ugly head? Would have enjoyed eating the brownie version more anyway.

If only I hadn’t scraped the asbestos-laden popcorn off all of our ceilings in our house. Although I wore a good respirator, maybe something slipped past. Could one of those minuscule fibers that I possibly inhaled been the snowball that got the avalanche started many years later?

But once again, do any of these “if only’s” have any proactive benefit in the healing process? Of course not. So why waste what valuable time I have in doing something so detrimental? Not gonna.

Now “what if,” “if only’s” cousin, can play both sides of the fence. If used looking backwards, it takes the same shape as “if only” since wondering what might have been is wasted breath. And trust me, wasting breath is the last thing you want to do as a lung cancer survivor. But if you use “what if” looking forward, it can have a positive benefit, as long as what follows that phrase are actual steps taken. What if I am able to get into that clinical trial? What if I spend more time Googling new treatment options and bring them to my oncologist? What if I connect with other NSCLC survivors to compare notes and exchange info? What if I win the lottery? OK, maybe that last one is a bit out of my control but hey, hope is a good thing too. And I have to pay for our bathroom remodel somehow.

How’s that for a segue? Yes, we are biting the bullet once again and are currently remodeling our master bathroom. Only a couple months after redoing our guest bath. And only two years after our total kitchen transformation. I figure if I let my wife keep changing things in the house, she might lay off changing her husband. Or changing him out. So far so good. We were what-iffing whether we should do this remodel, just as we asked that same question two years ago before doing the kitchen. But now, like then, we are looking toward the future and I plan on getting many years of magazine reading time on the new throne. OK, these days it would be iPad reading time, but I think you get the picture, even though you may not want to.

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I’m going to cheat and use a “what if” in the past. What if I hadn’t joined Rotary almost 10 years ago? That is not something I want to think about as it was one of the more important, and rewarding, decisions in my life.

Recently I was asked by our incoming Rotary President (Peter) to provide the beginning-of-the-meeting 2-minute inspirational message. It was truly an honor to be asked, especially for Peter’s inaugural meeting. Our club always has the Mayor of San Diego do the swearing-in ceremony so I was sitting next to him at the front table. So how about the Chargers, Mr. Mayor? Nah, we only chit chatted about nothing in particular. But as for my message, the last time I gave one at this club was just after being diagnosed a little over two years ago. It was my coming-out party, so to speak, although I had already started up my blog.

So this time around it was a similar message. If interested in reading the text, you can click on the graphic.

But the major surprise at Rotary was something I never saw coming. My wife had told me she wanted to come to the luncheon and I had assumed it was to hear me give the inspirational message. Yeah, right. Little did I know the true reason.

Here’s the background: many of you know that I have volunteered as a Rotarian “reader” to one of our elementary schools we have partnered with. However, instead of reading, I found I was much better able to keep the 1st grader’s attention by doing simple science experiments. If the students were any older the science would have gotten over my head. There is another Rotarian, Doug, that has been teaching science as a volunteer for many years at another school. So, that sets the stage. Speaking of stage, Doug was sitting next to me at the head table but he did not have a clue as to why. They just asked him to.

The incoming President always has their own agenda for the year and typically has one or two new programs they are introducing. So as Peter was introducing his plan, he mentioned a new science scholarship that they were creating and began discussing what it would be named and in whose honor. So I thought thought “Cool, that’s why Doug is up here. They are going to honor him by naming the scholarship after him. Awesome.” Yet when I turned to see the PowerPoint slide behind me, I saw both my picture and Doug’s. Turned out the scholarship was in honor of both of us, and in a nod to Bill and Ted’s Excellent Adventure movie, it was named “Craig and Doug’s Excellent Science (CADES) Scholarship.” It was jump started by a very generous $30K donation by another Rotarian and is intended to be perpetual. I was absolutely humbled and I must say, wiped a drought-breaking drop or two off my face. Very cool. The scholarship(s) will be given to students that are entering the science field in college.

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On the medical front, next Friday I will be enjoying a 3-way. OK, get your minds out of the gutter. I’m talking scans here. Of course there will be the usual CT scan of my chest area and the MRI of my brain to check on fuzzies in those locales. But since I have had an ongoing shoulder issue that has prevented me from playing softball, I asked if they could “throw in” a third MRI of my shoulder to at least determine what is going on there. I have done PT, and then I’ve rested it for months, to no avail. So we shall see what my options are. I may have the results of the scans by the end of the day on Friday. Stay tuned. And yesterday was my one-year anniversary from entering the A-Team (AZD9291) clinical trial. Yes, I’ve been popping that magic pill for 12 months and I will continue to see how long I can milk this puppy. Although I cannot imagine anyone wanting to milk a puppy…

Business as usual. Day at a time.

June 19, 2015 (Fri) – Into Each Life Some Rain Must Fall

If you haven’t read my prior blog, this won’t make much sense.

I’ve heard this saying before but never really knew where it came from. It actually originated with Henry Wadsworth Longfellow in his poem “The Rainy Day.” But that is kind of a dark and dreary poem, and thus not appropriate, so I will only steal the one sentence.

About that California drought I was hoping would continue? Well, this spider got a little dose of El Nino this past week. Down the spout I washed. Not all the way to the drain but enough to put a damper (oops) on my climbing ability. Essentially, and honestly no surprise to moi, my scans showed continued growth in the various areas (9 locations to be exact) previously showing progression, typically in the neighborhood of 3-4 mm increases. However, my onc-doc was more positive in indicating this growth is still pretty small.

I have been working on budgets at work for the past couple of months and even a few percentage points change could be huge. So when I look at the growth in my cancer, I calculate a 30-40% increase in size and that seems gargantuan. However, when you really crunch the numbers, it only equates to 1/10 of an inch or so, thus pretty minimal in the scheme of things. But it’s the trend that is of concern. Each of the last three scans essentially showed this similar pattern. Here’s a cut and paste from the official write-up: “appearance of slight-mild interval worsening of pulmonary metastases and mediastinal metastases.” Whatever happened to the terms stable or resolving? I know, I know. That’s life on the spout.

The upstairs brain fuzzy showed “interval slight increase in size of right cerebellar enhancing lesion now measuring up to 11.1 mm.” Thus, it appears that, as Dr. Frankenstein said, “It’s alive!” Still some question because they apparently used the higher res, or stronger magnet, scan that could account for some of the measurement differential. Rumor has it (since I’m still waiting to hear from my radio-doc) that we will wait until the next scan in six weeks where they will be sure to use the same scan settings. That way we can actually compare fuzzies to fuzzies (ie. apples to apples) to make a better judgement on what might or might not be changing. So, it looks like it will be business as usual until the end of July or so.

But you know what? Right now I’m spider-dancing in the rain because I am still doing really well. I have no difficulties doing day to day stuff including my volunteer gigs, working 40 hours per week (quit laughing Kim) and golf. I’m not playing softball because of my current shoulder issues but that is unrelated (I hope).

In terms of what is on the horizon, my lung-onc-doc says there really isn’t another magical pill for me in the near future. Apparently the new whiz-bang immunotherapy treatments are not quite there in terms of matching up with my particular situation. If any of my lung cancer peeps out there have more current info, please let me know. As it stands now my next option would be chemo-therapy. And that has me concerned. I know some of you with chemo experience would say, yup, not something easy to deal with, while others would say, eh, it’s no big deal. Everyone reacts differently and it all depends what cocktail you get. I prefer margaritas myself.

Recently a friend from our Rotary club presented me with a prayer blanket that her church friends had quilted. Now how cool is that? Thanks Diana. You know, the support I have had over these past 2+ years from every facet of my life has been incredibly amazing. I really think, no, I know, that is why I am doing as well as I am today. Thank you.

And speaking of Rotary, yesterday I had the privilege, as Chair of the Day, of introducing our guest speaker, Karen Possemato, the Chief of Staff at Illumina, here in town. Illumina is all about genomics and how that new cutting edge technology is coming into play in so many areas of our life, especially health care. It was a timely and appropriate talk, especially as it relates to my past and future journey. All very interesting, and encouraging, stuff.

Back to my spout climbing.

Business as usual. Day at a time.

 

June 7, 2015 (Sun) – I’m Just an Itsy, Bitsy Spider

I’ll be the first one to admit that I’m not the biggest fan of spiders. Right now my wife is reading this and going “Not a big fan? You hate them!” Well, let’s not exaggerate. Hate them? Nah. Afraid of them? Not as long as they keep their distance. But walking through a spider web would definitely send me into muscle-pulling, swatting gyrations wondering where the little bugger was.

Unfortunately what my father passed down to me and my brothers (let’s call it respect for spiders), my son inherited as well. Yet he had the ultimate scare that sends tingles down my spine. See the picture on the right? That is a brown widow spider, something I did not know existed until that fateful day a few years back. If you tap on the picture to get the bigger version, you will not only get a better view of its hourglass signature, you will also notice the white round edge on the perimeter. And that, my friends, is the edge of a toilet bowl. Getting the picture? My son discovered this 8-legger after making use of the facilities in a sit down mode. Now that will give you the heebie-jeebies.

But where does the itsy-bitsy (aka incy wincy) version come in? Not sure if this is a universal nursery rhyme so I will repeat the verse here:

The itsy bitsy spider climbed up the waterspout.
Down came the rain
and washed the spider out.
Out came the sun
and dried up all the rain
and the itsy bitsy spider climbed up the spout again

Now if that does not describe a cancer journey, I’m not sure what does. Each time I feel like I am near the top of the drain spout, along comes a rainstorm (eg. bad scans) that knocks me back. Then a new treatment comes along, whether it’s Tarceva or AZD9291, which dries up all the rain and allows me to climb back up. Now with my new set of scans coming up this Friday the 12th, I am hoping this California drought keeps up.

Business as usual. Day at a time.

May 17, 2015 (Sun) – What Router to Buy? A Cancer Blog?

If you think a hard drive is a tough commute or Adobe Acrobat is a gymnast rolling in the mud, you may not get this one.

Yesterday I spent the better (or worse, depending on your point of view) part of 3 hours researching and then traipsing all over town to replace my aging wireless router. For you nerds out there, I had an old “G” Linksys that would not keep our dueling iPads connected to the internet all the way across the house. Ended up buying a higher-powered “N” version that seems to have done the trick.

But, as before, this is not a blog about getting your tech on. In a roundabout way, however, it will touch on connectivity. More on that later.

No, I’m talking about business as usual to the nth degree. So would I be shopping for a router before cancer? Of course. Would I be spending all day at the office working on our non-profit budget on a Sunday (today) before cancer? You betcha. At dinner with friends, would I be powering down a couple glasses of sangria (spiked with tequila) followed by a Rombauer chaser, before cancer?  Absolutely. Would I typically be getting only 6 1/2 hours of sleep before cancer? Unfortunately yes. Should I still be doing all of these things at that level with cancer? Uh, no.

My wifey would categorically agree with the statement that I am pushing myself too far with this business as usual stuff. And I would be hard pressed to disagree. And disagreeing with your wife, in any situation, is not a recommended course of action. However, figuring out how to dial back my daily activities to a lower level than BC is easier said than done. Gotta have a router. Gotta balance that budget. Gotta have my Rombauer. The sleep thing? That I could work on. Maybe it would take some really bad news to press me into (in)action. Let’s not test that theory though, shall we?

On the connectivity front, last you heard from me I was on my way upstairs to connect with a bunch of lung cancer peeps at the Lungevity Hope Summit in DC. Having only met 2 or 3 other lung cancers survivors in person, it was a total trip to be in a roomfull (150) of them comparing notes, sharing stories and treatments and just reinforcing the fact that we are not alone. Lots of survivors there, many of them stage IV unfortunately, but the longevity ranged from the newbies (6 months since diagnosis) to 25+ years. Gives you lots of hope, which amazingly was the title of the conference. Duh.

In addition to the camaraderie, which was awesome by the way, we were also treated to several sessions put on by docs talking about the latest and greatest treatments and options on the horizon. Just keep pushin’ it out. That’s the plan.

One of the more fun things was to finally meet (in person) some of my fellow lung cancer bloggers who, with the exception of Dann, I have only met on-line. Here is a picture of a bunch of us. And can you tell we were having fun? And the dinner that Saturday was to die for. Oops, poor choice of words. 🙂 Hey, dark humor has helped keep me going these 2+ years. (Photos courtesy of Randy Elles Photography LUNGevity Foundation).

Since my flight was covered by a grant from Lungevity (thank you very much), I stayed on in DC for a couple extra days to visit a few museums. Visited the Spy Museum, the Newseum, and the Museum of American History. But since I am the one in charge of our budget at work, I could not justify staying at the Marriott still. Instead I found a 101 year old hotel just a few blocks from the White House. Very interesting accommodations. Although I needed neither a closet nor the A/C for the one night I was there, it was enlightening to see how they managed those features in such “classic” accommodations. The pictures speak a thousand words.

Back in the home country of San Diego, it truly is business as usual. Nothing new on the scan front until Friday the 12th when I get my next double dose. Scanxiety should kick in about the 9th or 10th. Keep those positive vibes coming so I can surf ahead of that wave and take advantage of some new options down the road.

Business as usual. Day at a time.

May 1, 2015 (Fri) – Life is a Box of Chocolates…

OK, say it with me now: and you never know what you’re gonna get. That’s kinda the way it works in the lung cancer world – you look right and get smacked on the left. Or you look straight ahead and get rear-ended. This particular time, while expecting, but hoping against, a particular result, I actually was not surprised. I got that chocolate nougat I thought I was picking out. Not a particularly tasty morsel but not a surprise either.

These past two weeks have been incredibly packed with stuff. From the Breath of Hope Walk two weeks ago, to a Rotary volunteer gig at the Humane Society last Saturday, to the Moores Cancer Center fund raising gala later that same night, finding time to update my blog has been a challenge. Right now I am 37,000 feet in the air, probably somewhere over Missouri, en route to the the Lungevity Hope Summit in DC. I figured this would be the only chance I have in the next couple of days to update everyone on my latest scans. But, as before, don’t expect a lot of cutesy graphics as I am writing this on my iPad and I was not about to spring for $19.95 for airplane wifi access. This will have to wait until I check into my hotel and I can can tweak and upload it.

As you know, last Monday morning I had my every-six-weeks double-your-pleasure set of scans: a quiet, hot-flash-accompanied CT scan of my lungs, which only took about 10 minutes, and a clanging brain MRI, that, unfortunately lasted about 30. But the good news is that it only took them two sticks to get an IV in me this time. That’s a 100% improvement over my last four-jab visit.

The next day I e-mailed my onc-doc to get the results. Surprisingly I got an email fairly quickly in reply from his nurse who indicated that he was out of town that day. However, she was very accommodating in faxing me the write-ups from both scans. Felt kinda weird reading my own results without going over them with my doc.

We have good news, and not-so-good news. The MRI on my brain came back with no change. No growth, no shrinkage, still there (whatever it is – more on that later), but not gobbling any further real estate. So no treatment plan at the moment for that puppy, er, fuzzy. I’ll take that.

However, the CT indicated continued slow growth in several fuzzies, in and around my lungs, just as the last test showed. And this time a new area of “suspicion” popped up: a spot on my kidney. OK, that was not the nougat I was expecting. But it is what it is, whatever that is.

Tuesday afternoon I met with my radio-doc to go over the MRI results. Although he likes to give me the news himself, he has finally accepted the fact that I find ways of getting my results before he can inform me. He was a bit bent out of shape because he had ordered a hi-rez version, and my regular onc-doc had ordered a standard one in direct contradiction. Of course, the scan-docs ran the basic one and the image was not as good as they wanted. Advice to other survivors: question everything. This occurred once before and I should have double checked before the scan to be sure they were doing the right kind. You have to stay on top of the details in your treatment. Do not make assumptions (as I did this time) because, well, as you know, ass-u-me.

Bottom line, he agrees that not zapping that bad boy makes sense now since it hasn’t changed. I think he regrets not convincing me to nail it the last time when he was certain it was an active fuzzy that needed blasting. So no need for that second $550 opinion right now. I’ll save that for if/when there is doubt about my treatment.

On Wednesday, I met with my lung-onc specialist at Moores who went over the results of the kitty-scan. Yes, things are still progressing (still hate that word) but at a reasonably slow pace. Slow enough to keep me in the trial for at least the short, perhaps longer, term. The kidney spot was a surprise as she hadn’t picked up on that in the write-up which she only had done a quick scan herself. Apparently that spot has been there, disappeared, and then come back over the last 9 months. But it was never pointed out previously. Although she is not overly concerned about that newbie, since she is not a kidney specialist, she was going to present it to the “tumor board” at Moores that meets weekly to get another opinion.

Bottom line #2: I am staying the course with no change in treatment for another six week increment. Nice to at least not have that hanging over my head for a few weeks despite the obvious concern about the direction things are going.

But as many of you are aware, there are a bunch of new treatment options out there coming to a city near you. Preferably to one near me. I asked my long-onc how long I might be able to continue the treatment plan I’m on before having to switch to something else assuming the same rate of progression. I was expecting maybe July or August. She said January. Really? Now that was very encouraging.

Obviously things can change and that estimate might go up in smoke, but I felt a little better after hearing that. Plus my A-Team drug, AZD9291, very likely will hit the market before the end of the year because it has shown to be so effective and is getting fast tracked. Once that happens, they can take me off the trial and prescribe the drug. That will be handy because they can then add other treatments in combination that they cannot do now because of the strict clinical trial guidelines. And if that kidney spot really is a fuzzy, they can zap it then. Right now that would get me kicked out of the trial.

In a directly conflicting opinion versus my radio-doc, my lung-onc is 95% certain that spot in my head is the result of tissue necrosis. Now that is a word that sounds just like it means – dead tissue. Otherwise it would not have remained stable. Amazing how two different docs can have wildly conflicting opinions. Advice #2: question everything. Oops, that’s the same piece of advice. Just goes to show how important it is. Nobody knows everything and certainly different docs do not always agree. Obviously you have to be be your own advocate.

OK, now the fun stuff. Last Saturday my wife and I were invited as guests to the Moores Cancer Center fundraising gala. They raised almost $2mil in one night! Now I know some of that was prearranged but it was still amazing. Proceeds will be going to additional immunotherapy research, perhaps one of my options in the future. Here is a picture of me and Kim, obviously enjoying ourselves.

Finishing this up from my hotel room in Arlington, getting ready to head up and meet a bunch of other lung cancer peeps. My heart’s a fluttering.

Business as usual. Day at time.

April 19, 2015 (Sun) – Wow, All I Can Say is Wow

You had to be there.

Today was one of the most inspirational days I have ever been a part of. A group of about 65 individuals, consisting of family members, friends, friends of friends, colleagues, fellow Rotarians, fellow Camp Ronald McDonald for Good Times counselors, and even a couple of high school buds (from 45 years ago – yikes) made up Team Craig – Get Fuzzy at the Breath of Hope Lung Cancer Walk. As you know, I’ve been shilling for this program for the past 6 weeks or so and it culminated in this morning’s event.

Our team was by far the biggest fundraising group, raising more than $11,000. The 2nd place team was less than half of that. But as my wife properly reminded me, it really was not about competition. It was about raising funds for Moores Cancer Center. You know, that place that has helped keep me alive for the past two years. And while I do not know what the final result was in terms of overall funds raised, I do know that our team provided a big chunk of that. Did I mention we came in first? Oops, sorry Kim. Those dang competitive juices again. But it was all for a very good cause. They even asked me to say a few words (gulp) as the top team. Click on the photo for the full effect.

But the inspirational part came from all of the supporters we had. While we were fortunate to have a few very generous donors making large gifts, we had more than a hundred others that contributed to our team, and thus to the Moores Cancer Center’s, success. But even though the goal was to raise funds, it wasn’t about the money. On a larger scale, it was about raising awareness for lung cancer research and treatments. Lung cancer still gets the short shrift in terms of research funding because of the stigma associated with the disease. The perception is that lung cancer patients are smokers and have done this to themselves. Heck, I probably had that opinion before I became an active, if unwilling, participant. So getting the word out to clarify that misconception is a constant battle.

On a more personal note, and thus the title of this blog, I was just floored at the support given me from all walks of my life. There was so many positive vibes flowing that, even though the event was about lung cancer, I forgot I had it for 3 hours or so. I am still in awe 12 hours later as I finger poke this blog. It’s kinda difficult to put it into words, and as a follower of my blog, you know that is unusual for me. Suffice it to say I was, and am, very humbled by the outpouring of love and support I witnessed first hand. For those that participated in one fashion or another, I cannot thank all of you enough. Just wow.

On the medical front, nothing has happened since I returned from Hawaii except for the reading on the bathroom scale. Reading as in 5 pounds heavier. Once again, my onc-doc will be very proud of me and happy at that result. Unless of course he hears how I gained it (Mai Tais, Rombauer, steak dinners etc.). I know when to keep my trap shut.

Since I have my next set of scans a week from tomorrow on the 27th, I will await the results of those tests to determine my next course of action. I am trying to get a second opinion from the brain oncologist at Moores to confirm (or not) the reading of my next brain MRI. Unfortunately because he is outside my health plan, it most likely will come out of my pocket for the 1-hour consultation, to the tune of $550. I guess we’ve been spoiled since we have such awesome health insurance and have had to pay next-to-nothing. I will be requesting a waiver for our insurance to cover this appointment but I’ve been forewarned not to expect it to happen. But I think I need confirmation that re-zapping that apparent fuzzy in my noggin is the proper course of action since it will be riskier than the first go-round.

We will also be doing the regular kitty-cat scan of my lungs to see how those troublesome fuzzies are behaving. Hopefully they are taking a little break with little to no progression from the last tests. Gotta stay in the trial long enough for the next new thing to come around. After hearing about some upcoming clinical trials at today’s walk, there may be something else for me in a few months. Maybe. We shall see.

Next Saturday, thanks to the generosity of one of the members on the Moores Cancer Center board of directors, my wife and I will be attending the big Spark Gala fund raiser. Here we will get to meet all of the major players in cancer research at this world renowned institution. Plus I’m sure we will drop a few more bucks in support of this wonderful establishment. Can’t wait.

On May 1st I will also have the pleasure and opportunity to jet off to DC to attend the 3-day Lungevity National Hope Summit. Hard not to notice the similarity in their group photo (if you click on the link) when compared to the team shot we took today. This is another “can’t wait” opportunity as I will finally get to meet a bunch of other survivors/bloggers who I’ve only met electronically.

Stay tuned for another update after my next set of scans.

Business as usual. Day at a time.