March Madness

Hey Everybody!

March certainly did come in like a lion...dropping a decent amount of snow over various parts of New England.  I think I speak for everyone when I say that I'm ready for spring!!

As I mentioned last time, Ken has begun hospice care.  Lisa, his hospice nurse, is wonderful.  She is a young, spunky nurse who fits into this crazy situation just fine!  She is coming to see Ken daily.  Primarily, her job is to check vitals, order medication and manage Ken's pain. She has ordered him a hospital bed and oxygen, both of which have made him much more comfortable. Recently he began taking liquid morphine, which makes it easier for Ken to breathe.

He has had many visitors in the past few weeks and we celebrated his 38 and 1/3 birthday! Brenda made Ken's favorite, carrot cake...AND Ken finally got that pony he's always wanted.

Again, thank you to everyone for traveling long distances, making food, and of course your continued love and prayers. 

March is colo-rectal cancer awareness month.  Please, please talk to your doctor about whether or not you should be getting an early screening...it truly could save your life!

XOXO Ken & Nicole

10 Months at a Glance

Hey Everyone,
  We know it's been close to forever since our last post...but life just sort of happened.  So, we're going to try to bring you up to speed as best we can.

MAY 2012-

This was a busy month, Nicole finished Grad School and to celebrate, we took a trip to Telluride, CO, with our friends Sean and Maryann, and their dog, Cricket.   We stopped at the Sand Dunes....

It almost didn't look real! The sand was hot...but the mountains were in the background...just beautiful!

Over Mother's Day weekend, Ken made a trip home to NH and met with a colo-rectal oncologist at Dartmouth Hitchcock Medical Center, in Hanover, New Hampshire.  Dr. Pippus seemed extremely motivated and excited about treating Ken.  After that trip, he flew back to Denver, packed up some things and prepared to travel back east...but not without the company of the doggies and big sister, Brenda!  Since paperwork for long term disability wasn't finalized, Nicole stayed in Denver and continued working....

JUNE 2012-

  Ken began his new regiment of chemo, the harshest one yet.  The side effects were staggering.  He lost all of his hair, broke out with painful acne, had bouts of vomiting and was extremely sensitive to the sun. 







JULY 2012-

Ken continued to go to chemo treatments.  He was approved for long term and social security disability.  Nicole's friend, Maureen flew to Denver and they made the 2,000 mile trip back east...but not without causing a little trouble and stopping in Chicago to meet up with Tara!!

AUGUST 2012-
  A CT scan revealed that the harsh chemo was not working...and the tumors continued to grow.  The only option Ken was left with was to wait for a clinical trial pill form of chemo to become FDA approved. 

But, Ken didn't wait idle...

He fished with Philip and Brenda

He also helped do some stone work around the base of the Danbury House...










SEPTEMBER 2012-
  Finally, the new pill form of chemo begins.  It, with it's own weird set of side effects.  For some reason, it made Ken's bones ache and made it hurt to move.  We were hoping for the ole adage, no pain, no gain!

OCTOBER 2012-When Ken didn't feel like he was 100, he tried to get out and enjoy the New Hampshire foliage.  Here he is on his way back from hanging a camera in the woods, in hopes of capturing some photos of the wildlife...

NOVEMBER 2012
  Ken wound up in the hospital over his birthday with a cyst and fistula that had developed in his bootie.  Surgery was necessary in order to solve the problem.  Before they determined what was wrong, the hospital ran a battery of tests.  A CT scan of his chest found that his new pill form of chemo wasn't working and that one of his tumors had nearly doubled in size.  Surgery was performed and the situation was resolved.  A few weeks later, we met with Ken's oncologist.  He gave us the paralyzing news that there were no more FDA approved chemo options for Ken.  He said that there may be one more clinical trial out of Boston if we wanted to go that route...Ken opted to not.  So, it was then the gauntlet fell...and Ken was told he had 6 months to live.  We went on to celebrate Thanksgiving with his family...and tried to focus on all that we had to be thankful for.

DECEMBER 2012-
It was pretty much business as usual...we were busy getting clerical things taken care of and of course Christmas shopping.  The holidays were wonderful and many happy memories, and perhaps, even traditions, were made!  Here is a picture of Ken putting together some Lego's with his nephew.

JANUARY 2013-

Happy New Year!!  Ken was able to spend sometime snowmobiling with his brother in New Hampshire...Come to find out though...Ken was functioning with only one lung.  Shortly after this trip, Ken found himself in the ER with over 4 liters of fluid in his right lung.  They drained the fluid and prepped Ken for surgery.  They went in and scraped Ken's ribcage, blew talc powder into his chest cavity and hoped that his lung would stick, thus allowing the lung to drain on its own.  He was in the hospital for 5 days with a chest tube.  We met so many wonderful people...thank you so much to the incredible staff at St. Francis Hospital!! 

FEBRUARY 2013
Ken continued to rest after surgery.  But there were no complications and the surgery seemed to take.  Hospice care began.  Ken has a young, energetic hospice nurse, Lisa, who fits right into this crazy situation perfectly!!  She has been very helpful in educating all of us about the disease process.  But it wasn't all, doom and gloom.  On February 11, Ken, Philip and Noah went to the Bean Pot, in Boston...an event Ken has wanted to go to since forever.  Here is a picture of them outside the rink...


We also finally got to take that trip to Mohegan Sun that was planned for way back in November...better late I guess!  Here's a picture of the view from the room we stayed in.









So, that's it...the abridged version!  We'll get into what's happened since then in a little bit.  Take time and let this all digest.  We thank each and every one of you for your continued love, support, kind words and prayers.  XOXO Ken & Nicole

Chemo #15 and Busy Bees

Hey Guys! 
  It's been business as usual around here in the health department, as far as chemo is concerned.  Ken has developed a serious cough over the last few weeks, but according to the Nurse Practitioner it either "just allergies" or his "tumor has grown into the lymph nodes in his lung." The only way to determine what's going on is to do a CT scan.  We are waiting to hear from the oncologist to go ahead and make an appointment to rule out any growth.  The neuropathy in Ken's hands and feet is worsening, but according to the doctors, this is normal after stopping oxalyplatin and it can take up to a year for it to go away.  This makes buttoning a shirt, walking and even driving pretty difficult at times.  But hopefully he'll start to feel better soon.

  Living with Uncle Jim and Auntie Cappy has been great in helping Ken get motivated and out of the house.  The dogs, especially love all the extra love and attention they get! 

Nicole, however, needs to beef up on her cribbage game...due to the fact that she lost to Jim 3 games to 1 the other day and now owes him $20...

As an incentive for renting our storage unit, we were able to pick a professional sport game that we would like to attend for free.  We decided to hit up the Avalanche's second to last home game and hopefully see them clinch a playoff spot. 

We lucked out and were nine rows off the ice, just to the left of the penalty box. 









Sadly, though, the Av's lost to the Columbus Blue Jackets and didn't make it to the post season....

The next day, it was wheels up for Nicole, as she headed to Waukesha, WI to visit her bestie, Tara and family.  While there, Nicole got to celebrate Easter, and her God-daughter Kendall's 2nd birthday!

 

 


And...they may have hit up a few bars throughout the weekend!








 Ken's mom was able to make a visit to Denver while Nicole was gone, which enabled them to have a lot of quality time together.  And this past weekend, Nicole's parents stopped in to Denver on their way to Las Vegas.  So...needless to say, we've been pretty busy!  We hope you all  had a wonderful Easter and we hope to see you all soon!  Love, Ken & Nicole

More Chemo & A Move

Hey Everyone & Happy Spring!
  Well, it seems we've sort of hit our stride in dealing with this whole cancer thing.  The doctor came back with news that radiation and surgery are not options for Ken at this time.  Surgery would most definitely result in a colostomy bag and radiation presents a high risk for internal bleeding.  So, at this point in time Ken will just continue chemo every two weeks, until....well that's this BIG question.  Right now it looks like that will be forever...so we'll just have to wait and see. 

  In between chemo treatments, we entered step one of phasing ourselves out of Colorado, when we got rid of most of our things, put what was left in storage and moved in with Uncle Jim and Auntie Cappy.  They have been so gracious to let us stay in their home these last few months that we're here.  The dogs are most the most excited, however, because this means lots of pats on the head, walks outside and treats!! 

  Ken's Uncle Paul made a quick visit to Colorado this past week and Ken was able to go and have dinner with him.  It's always so nice to see a familiar face! 
  And I think that's really it to report.  We hope you all have a fantastic Easter and we'll talk to you soon.  Love, Ken & Nicole

New Chemo & Peter's Visit

Hey Everyone-
  On Monday, March 5th Ken had a GI scan with barium.  He had to drink a barium liquid and then every 20 minutes or so for an hour have scans taken of his GI track.  This is to see how his digestive track in functioning as well as to see whether or not his Crone's is isolated to just the ilium.  Then on Tuesday, March 6 he had a CT scan with contrast.  This was a routine scan to monitor the growth/shrinkage of the cancer throughout Ken's body.

  On Friday, it was time get excited when Peter landed in Denver...maybe not as exciting to some as Peyton Manning landing in Denver, but it certainly made our weekend!  And we tried to make the most of it!  Of course we took him to our favorite sushi spot, Junz.  Then made time for Nicole to kick his butt in cribbage.

 On Saturday we went downtown to REI and did some shopping and walked with the dogs along the river walk and enjoyed the nearly 70* weather.  Peter and Ken also revisited the crime scene where Lenny had his go cart crash a few years ago and decided to do a race in his honor.  There were a few spin outs, but Ken was the winner.  Later that night we went back downtown to watch the Colorado Mammoth, Colorado's indoor lacrosse team win over their opponent in a buzzer beater game.  And no trip to Denver would be complete without an afternoon at Auntie Cappy & Uncle Jim's for some delicious food, tasty wine and fabulous company.   Sunday afternoon came waaaay too quickly and we were back at the airport dropping him off.  But we all (especially Lily and Cookie) enjoyed his company and hope to see him again soon.

  Tuesday, March 13th it was back to business as usual.  This day was bittersweet.  On the one hand Ken was happy to be off of the chemotherapy that causes the neuropathy, but bitter at the fact that he needs to continue chemo.  The most recent GI scan showed that Ken's GI track is functioning mostly at a normal level, the Crone's is contained to the ilium, and that is was less inflamed than before.  The most recent CT scan showed that there was no change in the size/shape of any of the cancer in Ken's body.  Not awesome news...but what's important is that it's not growing.
  Our doctor said that she is taking Ken's case in front of "the board" later in the week.  The board is made up of medical oncologists, surgical oncologists, radiation oncologists and GI specialists.  In fact, the first doctor who operated on Ken is slated to be present for the presentation of his case.  According to our doctor, they are going to discuss such options as a new chemo regiment, radiation and even surgery.  Our doctor thinks that perhaps surgery may now be an option, because of the amount of shrinkage of the tumor in Ken's rectum.  But for now, it's just more of the waiting game, and like we always say...we'll keep you posted.
  We hope you all are enjoying this unseasonably warm weather, wherever you are and Happy St. Patrick's Day to all of our Irish friends! :)  Love, Ken & Nicole

Chemo #12, the GI Doc and Fun in the Sun

Hey There Everyone!
  On Friday, February 17th Ken had an appointment with a GI doctor to discuss the location and possible treatment of his Crohn's disease.  Did you know that Crohn's disease is a form of inflammatory bowel disease (IBD). It usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum.  Ken has had this disease since he was 15 years old.  The exact cause of Crohn's disease is unknown. It is an autoimmune disorder. An autoimmune disorder is a condition that occurs when your body's immune system mistakenly attacks and destroys healthy body tissue.  People with Crohn's disease have ongoing (chronic) inflammation of the gastrointestinal tract (GI tract).  Prior to being diagnosed with cancer, Ken's doctor verified that he had Crohn's disease near his ilium.  However, since getting routine CT scans, there has been a discrepancy between where this doctor said his Crohn's was and where his current doctor thinks it may be.  The GI specialist will be running test on Monday, March 5, to verify the Crohn's whereabouts, and then she will decide a course of treatment.  When we met with her, though, she did say that treating the cancer was the number one priority.  We'll keep you guys posted.
  On Tuesday, February  21 it was wheels up for us as we headed to to Key Largo, Florida, for 7 days of fun in the sun!  Our trip highlights included such things as getting see old friends, boating, seeing dolphins swim off the bow of the boat after sunset, visiting Key West, feeding the manatee, snorkeling the John Pennekamp reef, swimming out to Christ of the Deep, and eating such delicacies as Stone Crab, Snapper and Grouper.  Many thanks to James and Jenn Kent for letting us crash in your vacation home and to Mr. and Mrs. Kent for making a special trip down from Coral Gables to see us!  We miss you all already and can't wait until we see you again! :)

 Also, many thanks to Kris & Lola and Jim & Cappy for taking such good care of our girls when we were gone!!  You guys are awesome! :)
  It was back to reality on Tuesday, Feb. 28th when Ken had the last of his first 12 treatments.  He discussed the possibility of radiation with his doctor, and after much careful thought and consideration, has decided NOT to proceed with it.  Due to the fact that this disease has already metastasized (moved to other parts of his body) we feel that it is better to just stay the course and continue chemotherapy.  Another CT scan will be done in few weeks, and we will know then whether or not the cancer continues to shrink.  We will make sure to keep you all posted.   

  Waiting for us in our mailbox when we got home was a package from Mrs. Katie (Beach) Beaupre!  We opened it to find a bunch of little boxes wrapped and numbered, along with a card and a short story.  As we read the story, there were instructions as to when to open each box...

As we opened each package we found many of our favorite sweet treats!  Thanks, Beach, for thinking of us!!  And for writing such an awesome and creative story!  :)
As winter winds down and begins to turn to spring, we hope you all are happy and healthy...wherever you are!
Love, Ken & Nicole

Chemo #11 & He said, She said

Hey There!
  We've been pretty busy since the last time we wrote to you all. 
  First of all, we went to get a second opinion from a Radiation Oncologist, and boy, did we learn a lot.  Did you know there different types of oncologists?  There are medical oncologists (like the one Ken has now)-they administer chemotherapy.  There are radiation oncologists-they administer radiation.  And there are surgical oncologists-they perform any surgeries related to cancer.  Pheeew-ok-now that we got that all figured out...we went to get a second opinion from a radiation oncologist to see what he thought about the treatment Ken has been receiving and if he thought Ken would be a candidate for radiation. 
  According to this doctor, radiation is inevitable.  A patient can receive radiation to shrink a tumor that is causing a blockage, pain or to ultimately get rid of a tumor.  This doctor believes the chemotherapy alone will not get rid of Ken's cancer-most importantly, the tumor in his bootie.  Having said that, he feels that the treatment Ken has been receiving thus far is what he would have suggested.  It is responding to the chemo and therefore it is shrinking.  This is when, ideally a patient would have radiation, when the cancer is on the downswing-being proactive, rather than when it is on the upswing or growing-being reactive.  This doctor specializes in a procedure called Brachytherapy, also know as internal radiation therapy.
  Brachytherapy is a form of radiation that delivers high doses of radiation from implants placed close to, or inside, the tumor(s) in the body. This technique ensures the maximum radiation dose is given to cancerous tissues, while minimizing exposure to the surrounding healthy tissue.  He believes Ken is a strong candidate for this procedure.  If he were to do this, Ken would continue receiving chemotherapy, while at the same time receiving daily radiation treatments for 9 weeks. 
  Now...of course, Ken's medical oncologist would have to agree to this...and right now there is some confusion as to whether or not she is in agreement.  She has some trepidation because she is not sure if the chemotherapy will be strong enough to continue shrinking the tumor in Ken's lung.  So...we have a big decision to make and of course each option comes with its own set of risks.  But hopefully we'll have an answer for you all soon!

WOW...that was a lot!  But it hasn't been all about decision making....because we were able to get up to the mountains and go skiing!!  We weren't sure how this was going to go since Ken is so sensitive to the cold, but it ended up to be a really great time!  It had snowed the night before we went to Loveland and the trails were perfectly groomed when we hit our first run at 8:30.  It had been two years since Nicole had last skied, so she was unsure if she was going to enjoy this...but she ended up doing 11 runs that day...more than she's done in the last 2 ski trips combined!!

She even made some attempts to go through the trees. 

Skiing that much definitely made her tired!

Thanks to Sean and Maryann for suggesting we tag along!  It was a nice break to take our minds off of everything.




And now...we're getting ready to pack and head to Key Largo, FL, where the weather forecast is 85 and sunny!  We hope this post finds you all happy and healthy.  Talk to you all again soon.  Love Ken and Nicole