Another Memorable Day in the Life of Dan

Although I should have known, I was caught by total surprise again today when my wife Carol, Amanda, and Nikki.  Going out on what had been touted as a girls day out, maybe a nails day or something, but, instead, a gift of caring, sharing and love.  The girls all came home with permanent marks of love ... they all got tattoos.  A colon ribbon for my soon-to-be daughter in law, the sun, and moon on Nikki's beautiful feet and the awesome story behind their meaning ... I will forever be looking up during my journey.  Lastly and most touching to me is Carol's specially designed colon cancer ribbon, but my name below it.  I never expected I would ever see that, or hear her give more than she will ever know ...



This could hardly a better day. Carol, saying thanks is not enough ...  You have rocked my world ... but ...
Thanks
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Wow’ed Tonight With A Surprise Gift

For those that might not know, I’m sort of into Christmas  decorations, which, by now have been all packed away, and in particular, I have a pretty big “nutcracker” collection.  They are not the super nice German made nutcrackers, but more of your run of the mill Christmas decoration style.

Tonight, we get a knock at the door as I let the girls (Carol and my daughter Tina) take a break from installing the new engineered hardwood floor in the family room (a nice little nearly 600 square feet project).  A former co-worker (Gerry Bernard) and his wife (Karen) are at my door.  We don’t often see each other much since my retirement except when he has stopped by with homemade soup during my eventful year i has fighting cancer.  I thought maybe they stopped to wish me well as I begin the first again.  But no, it was for something that totally shocked, surprised, and caught me off guard.  Karen has made me a quilt to go with my nutcracker collection. An amazing work of art!

So Karen, I thank you from the bottom of my heart, it’s absolutely beautiful and so skillfully made.  Wow.  The best I can do for this year is to share a picture from Christmas past, with a peek of the nutcracker collection, as it was then.

                       Thank you Karen Bernard!

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Recovering at Home

me waiting to have a chemo
infusion Tuesday before
being admitted.

After quite an eventful couple of days, I was able to talk my way out of the hospital this afternoon.  I will spare you with the gory details that began late Sunday night, continued through Monday and ended with being admitted to the hospital Tuesday.  You don't want to know it all.  Suffice it to say today I am feeling much better, able to eat somewhat again, and I think I may have lost a pound or two ...  there's always a silver lining if you look deep enough.

I posted a "Request for Help" in my Director Dan Happenings blog if you'd like to see how you could really help me in January.  I can't tell you how much I'd appreciate you stepping up for me personally and the American Heart Association if you are able and so moved.

I have not been online much in the past few days, but I have seen many of the hundreds of messages, text, emails that you all have sent ... I continue to be overwhelmed by you expressions of care and concern.  Thank You! 

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A Restful Night

Well I surely did not expect to spend the night in the hospital last night, but that’s the road I traveled. This past Sunday and Monday were not happy days for my stomach and connected internals. The docs and nurses certainly didn’t need a stethoscope to hear the bowel sounds.  I thought I was hearing the soundtrack to “Pirates of the Caribbean, Dead Mans Chest”.

I came to the Cancer Center yesterday morning to begin the next phase of the cancer fight with a new chemotherapy drug.  Knowing that I had such an upset stomach and had vomited at 3:30am, I knew the chances were slim that would happen, and I was correct.  They decided to delay the start for a week so I could get over what else was ailing me.  I made it almost to the car before vomiting a second time, sorry for the gross details.  I sat in the car for a while waiting for Carol as she went back in to talk with my docs.  We headed to the ER where they were waiting for me and the lovely, and somewhat, painful test began.  

The good thing is that I napped a lot all afternoon and throughout the night.  A couple hits of morphine probably didn’t hurt, it’s the most sleep I’ve had in a long time.  

This morning I’m waiting to have an endoscopy, oh joy. I said to the young doctor “as long as you bring an antithesis doc with you and I’m sleep, do what you need to do”.  I pray they don’t find more stuff going on, my list of ailments is long enough ... I’m ready to get well and get back on my feet.  These changes have lightened my load for January as I was able to cancel some physical therapy appointment and a pre-colonoscopy meet with another doc.

Speaking of colonoscopies, if you are 45 years or older, have you had a colonoscopy yet?  Doing so early saves lives ... yours in particular!  It’s easy, we all need to do it, so get it done #JustBecause.  You ladies that might be reading, you have other parts that need cancer screenings, don’t skip them, get them done too!

Endoscopy, here I come ...

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Never, ever, forget how amazing you are and can be!

On Your Mark, Get Set, Here We Go

Post about my cancer journey in this blog have turned into updating my family and friends about what's going on.  Please indulge me.  This past week or so has been a whirlwind of thoughts and emotions, thankfully, I finally got my thinking straight and my positive mindset back.  The waiting has been a challenge, but I finally have answers and direction tonight, on a couple of fronts.

Me receiving chemo in March 2018

On the medical front, I will be restarting chemotherapy at at Mass General Cancer Center at Cooley-Dickinson Hospital on Tuesday morning, January 15, 2019.  Chemo kicked my butt last time around, and might again, but chemo will be my friend and help rid this old body of any mutated, cancerous crap that's in me.  The silver lining is that I will be receiving it from the best infusion staff ever in Northampton.

My chemo cocktail will be a little different this time around too, and hopefully, the side effects will be not only different, and fewer, but, we shall see.

You may or may not know about my other decision to move forward with using Cannabis Oil in a parallel path, specifically, Rick Simpson Oil.  I've talked with my oncologist about it, and she is not opposed to it running alongside the chemo.  I will be documenting exactly what I am using, how much, how I'm feeling, and when in my "CanCannaCure" blog. 

I have "lots" of appointments in the next week or so.  Appointments with oncology physical therapy - I don't even know what that means, liver surgeons, colonoscopy docs, chemo and many others ... we have to move before we can move forward.

a small dose of RSO

On the alternative med front, tonight will be the start of me using high THC indica medical marijuana.  The goal is to ingest a bunch of Rick SImpson quality oil (check out the"CanCannaCure" blog if you don't know what that means), 60 grams in the next 90 days - the seemingly magic number for THC to kill cancer - if it does.  You do what you need to do and can be comfortable with it.  The purpose of the "CanCannaCure" blog is to document that part of my journey.  I hope it goes to help someone else facing a similar situation and they want some first hand knowledge of its effects on me.  I should be ready to start the intake of my RSO.  Who would have ever thought I would be seeking to become an educated patient that self medicates using marijuana?  I would have bet against that, every day.  No way, no how is out the window, I just took my second dose, the second of my life.  This journey is all about life and living.

While listening to Joel Osteen today, I was reminded of how there are many times in our lives, we will experience "Unexpected Sunshine".  Its as if it is a daily occurrence with me lately.  Unexpected sunshine is when good things happen when you were just not expecting it.  It's like when the weather report is for a cloudy day, and all of a sudden the clouds just dissipate and you have unexpected sunshine.  Yesterday, I reconnected with someone I have not seen in years and years and today, she is now in my corner helping me with the meds I need, so thankful for knowing the right people, who know the right people.  It's been said, it's all about who you know.

Lastly, as a reminder, I will also ask again, if you haven’t done so, I encourage you to dig into your pocket and help support me and My American Cancer Society Relay For Life team with a donation ... any amount, it all helps. I have received hundreds and hundreds of messages, calls, and emails of encouragement ... if each of those person's made a $5.00 donation, we’d surely help make a difference.  You can make a tax deductible donation in support of me and my team by clicking here:  My Relay For Life Donation page, you'll get your tax deductible receipt directly from the American Cancer Society.  If you can’t do the donation site $5.00 minimum, put 2 bucks in an envelope and send it to me at:

Team Director Dan, Relay For Life

141 Oakridge Drive

Belchertown, MA 01007

I’ll document it and donate it to the team with along with others donations and all with my sincere thanks.  Again, I can not thank you enough for the outpourings of support, for following my story, and for the love you have shown.  It means the world to me, thanks.

Never, ever, forget how amazing you are and can be!

Back to Basics, Have You Been Screened?

I have made a lot of post about my cancer, it's return, Cannabis Oil, Projects, and more.  When I first found out I had cancer, my theme, my goal, my desire, was to encourage everyone to get screened... early detection means early detection, and early detection means improved treatment.

Colonoscopies save lives!  That is not too hard to understand.  Mamograms saves lives.  That too is not hard to understand. All other screening and early detection save lives.

Do IT.

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Never, ever, forget how amazing you are and can be!

I Talked to My Doc Tonight

Dr Lindsey Rockwell and me
August 2018

This post is more of less an update for all those who have asked, I spoke with my oncologist tonight.  The waiting game can be mental torture, not only for a patient, but, for the family and friends as well.   

Dr. Rockwell is an amazing oncologist that has really shown care and compassion while treating me, much to my liking.  I really missed seeing and talking with her this past couple of weeks while I had to deal with the doctors and hassles of Mass General Hospital in Boston where I felt I had been reduced to a patient number, which they never even told me what my number was.  Dealing with them raised the stress level into the stratosphere at times.  It's been getting better, but Joel Osteen really grounded me today with his "You can not be defeated" message.  I was reminded that I am in God's favor and I will not be defeated.

We won't go into my frustrations with the people of Mass General in Boston, that's negative and doesn't add to where we need to be - positive and in fight mode.  Dr. Rockwell (Mass General at Cooley-Dickinson Northampton, MA) spoke with my new lead oncologist, Dr Jill Allen at Mass General - Boston today and called me with the run down.  

Dr Allen had a conference with Dr Cristina Ferrone, a  surgical specialist in Gastrointestinal malignancies and metastatic liver disease, Immunologic treatment of solid tumors and GI malignancies.  Dr Ferrone feels the colon cancer spot, or two, on my liver is a good candidate to be resected.  That's good news, however, my plan is that the tumor will be destroyed and dead before that has to happen ... I will NOT be defeated, Dr Ferrone is just my plan B.  The second potential spot was listed as "concerning" and could also be resected if necessary.

Dr Allen did not have as much concern with the solid spot on my lung (lower left) and for now, it will be in a sit and watch status.  I think they are hoping it is unrelated and I'm hoping it will be reduced with the impending chemotherapy I'm going back on.  Nevertheless, they are doing nothing with it for now, but I will be something about it ... because I will NOT be defeated.

I will go to Mass General Cancer Center at Cooley-Dickinson sometime soon to sign the Consent to Treat forms that are necessary for chemo.  I asked why I had to sign new forms and was told it was a requirement anytime a chemo regiment is changed. I asked if that was a requirement of their lawyers for me to sign all the fine print in order to protect them if something goes haywire - she chuckled a bit and more or less agreed.  I'll do all that with her PA, Marnie Scott, who is just as incredible as Dr Rockwell.

Other tidbits including questions I asked and the responses:

• I need to restart taking my Lovenox which was stopped prior to having the biopsy.  That's taken as a blood clot preventative since I have a triple threat for blood clots.
• There is no issue with me adding over the counter vitamin D3 to my daily intake.
• Dr Rockwell was unfamiliar with EISSAC Tea.  I had read several articles on the subject, including where it came from, Nurse Cassie (EISSAC is Cassie backwards).  Some articles were very positive, others not so positive.  I'm going to do more research on this before I decide to try it - I never did care for tea, but, in my case, you do what it takes to eliminate it.
• Dr Rockwell had no issue with me adding Cannabis Oil to my medical marijuana use (which I have not been using other than to give it a little try early on in my original chemotherapy treatment).  I've been reading a lot and, whether or not there is scientific proof whether or not it kills cancer, there are way too many testimonials to ignore it as a potential cure or aid in the relief and elimination of cancer.  I will document my journey down this road for others to follow or use to determine whether it helps me, or not, at my new CanCannaCure website.  Post there will be specific to any use of cannabis oils and medical treatments, not normally the narrative like I spew out here.
• Dr Rockwell also confirmed, should I choose to look elsewhere for treatment, rather than at Mass General, she said she has many associates at Dana-Farber she could work with and remain my local oncologist - this made me very happy.  We are going to wait until after I meet Dr Ferrone on January 22nd and will discuss further.

That's it for the update!

Now for the commercial message.  I sincerely appreciate all the support so many of you have provided to me via social media, direct messages and emails, cards int he mail, and especially with your financial donations to my Relay For Life Team.  Thus far, we, you and I collectively, have collected nearly $1,000.00.  That is so very awesome, thank you.

For those that have not been able to make that contribution yet, you can make a tax deductible donation in support of me and my team by clicking here:  My Relay For Life Donation page, you'll get your tax deductible receipt directly from the American Cancer Society.  I so much appreciate you digging deep!

That's it until I hear from Marnie in the next day or so ...  be great and be positive, never ever how important you are to me, you ROCK!

I’m As Ready As I Can Be

It’s been a week or so since I was last able to write, I’ve been in a mental whirlwind of emotions, fears, and a whole lot more.  From dealing with a surprised diagnosis of colon cancer nearly a year ago, to many months of chemo followed by a celebration of what appeared to have been a clean bill of health, only to discover not only was my cancer back, but I’m now at stage 4, has been devastating news.  I was and am mad as hell.  I really tried to follow all the guidance, do all the right thing, why is this bastard back?

I honestly didn’t feel I could think straight for more than a few minutes. I felt I had been given a death sentence, and quite honestly, still feel that to some extent.  I feel my days have been reduced to real numbers, many fewer than most of us hope for.  I’m no longer going to live forever, death and checking out from all I know feels like it’s hit home.  Horrid, horrid, horrid feelings.

I’m not grounded completely, but, I feel my feet are at least scuffing the ground a bit ... just like as a plane touching down and you see that first puff of smoke ... almost there and can breathe a bit more normally.  The support and outpouring of love has been amazing and more than I would have ever dreamed I had out there.  I’ve done much in my like, had my hands in a lot of things, but of late, the past several years actually, have felt very unaccomplished inside.  Thinking many of past apparent successes where nothing more than mere mirages. So many things didn’t go or end up as I planned.  I've been really mad and feeling down and out.  However, I’m not ready to go yet, I have corrections to make, goals to achieve, accomplishments to meet.  Look out cancer, this boy is back and going to kick your ass, again!

Since I last wrote, I’ve had a liver biopsy, which wasn’t too bad, but wasn’t very fun either, and that has been confirmed as colon cancer on my liver - I’ve at stage 4 - this crap is everywhere within me.  The silver lining is that the biopsy was successful in collecting enough tissue samples so a molecular study could be done (if those are the correct terms) to determine what proteins are associated with my cancer.  Why?  The advances in medical cancer research has discovered that the immune system can be trained to seek out mutated cells (the cancerous ones), attack and kill them much better than the current chemotherapy that sort of kills everything, good and bad.  Known as immunotherapy, it’s greatly more advanced and produces superior results compared to today's general chemotherapy.  I’m hoping for the best and we can more forward with immunotherapy.

It takes 3 to 4 weeks to complete the protein study - what until then?  The sitting around waiting is a mental challenge.  The mind wanders so easily, what can I do?  My doctors at Mass General in Boston are planning on restarting chemotherapy, but using different drugs in the cocktail.  I had reactions to Oxaliplatin so it is out and "I think" they are recommending Avastin as a replacement, which is a drug that can be used with colon cancer that has metastasized to other organs, such as my liver and lungs.  The problem is, the side affects, of chemotherapy in general, and those of this drug, are scary as hell when you read them.

As a side note, I’ve always been amazed at drug advertisements on TV that last for 30 seconds, in which 10 seconds are how good the drug is and 20 seconds of all the bad stuff and fine print that can happen by taking it.  I digress.

So, while I’m waiting to hear when chemo will start, and to meet with the liver and lung surgical team at Mass General, I have been doing my own research and looking at options.  Second opinions and case review at other cancer centers seem to be in order, as do alternative approaches.  Medical marijuana, or cannabis, seems to be have the attention of MANY people, perhaps not those in the scientific or medical world yet, but it’s hard to ignore the hundreds and hundreds of positive stories.  For example, check out some of the testimonies on Cannabis Health Radio as hundreds of examples.  It’s an area I will continue to research.

Lastly, I will also ask again, if you haven’t done so, I encourage you to dig into your pocket and help support me and My American Cancer Society Relay For Life team with a donation ... any amount, it all helps. I have received hundreds and hundreds of messages, calls, and emails of encouragement ... if each of those person's made a $5.00 donation, we’d surely help make a difference.  You can make a tax deductible donation in support of me and my team by clicking here:  My Relay For Life Donation page, you'll get your tax deductible receipt directly from the American Cancer Society.  If you can’t do the donation site $5.00 minimum, put 2 bucks in an envelope and send it to me at:

Team Director Dan, Relay For Life

141 Oakridge Drive

Belchertown, MA 01007

I’ll document it and donate it to the team with along with others donations and all with my sincere thanks.  Again, I can not thank you enough for the outpourings of support, for following my story, and for the love you have shown.  It means the world to me, thanks.

Parting thoughts shared with me by my dear friend Bernice....

it's for me, and it's for you for whatever you're facing...

shared with you with my love  ....

The Anxiety of Waiting to Meet My New Oncology Team

Not such a great title, but, the mental game of thinking about whats going on, thoughts of end of life coming way sooner than I ever hoped or planned for, wondering if I'm curable, all more suitable title topics.

The tumor on my liver where the biopsy was completed

Later today I head for Mass General Hospital's main campus in Boston to meet with Dr Jill Allen who will become my new lead oncologist.  On Monday I had a biopsy completed, which I wrote about here,   The biopsy was done first to verify whether or not the tumor was cancerous or not, and secondly, presuming it is, to identify the biomarkers of my cancer.  I am such an uneducated layman when it comes to all of this, but I'm trying to learn so at least I sort of have an understanding where the doctors and researchers are heading.  I found the article "Biomarkers in Cancer Immunotherapy" on the Cancer Research Institutes Web page helpful for me to understand what biomarkers are and how they are used to plan on future treatments, God willing.

A cousin also forwarded a TV News report that aired last February 2018 regarding a very successful immunotherapy trial in mice. I can't wait to hear what advances have been made in the past year. Check out the news story:


I have some anxiety, sleeplessness, worry, hope, and faith.  We can beat this, again.