Folfox - 6 Underway

Started Folfox-6 today which will be the halfway milestone on wednesday when the pump is removed - the new meds are working great - i am hoping not to sleep through xmas - very exciting.

Connor finally finished his college applications and they have been sent out - very exciting.

We finally have partially moved out of the basement only to find the new shower drain is now leaking in the basement - hoping to have that resolved this week - very exciting.

The sliding door in the portland house that started leaking before Thanksgiving is scheduled to have the sill flashing removed and replaced this week - turns out my favorite contractor (being facitious here) rebuilt the new condition to the same poor quality that required it be replaced due to the same leaking issue - very exciting.

Passed 1,000 page views for the blog this week - very exciting.

We will be heading over to the Sunriver house Thursday for the Holiday's - the kids are anxious to get the ski season kicked off - very exciting.

Welcome back Kathy and Joe!

Prayers out to Di and her family - hoping your mom gets some "negative" test results back and the next round of surgery goes better than the first.

Stay Healthy -
Best
C-

Project Progress - Almost Complete................................

Well we almost got there.....everything is ready to go except for the bed which is a pretty key component for a bedroom.....should be delivered tomorrow (Wednesday) and then we can officially move out of the basement.....yeah.

Carpet and Blinds installed - waiting for a bed.......................

California Closet shelving system installed............

Glass Shower Enclosure installed....waiting for customers

Bathroom complete.............

Vessel sink...........

Hope all is going well.

Stay Healthy
Best
C-

FOLFOX-5 Completed

Number 5 -  Five is the third prime number. Because it can be written as 2²¹+1, five is classified as a Fermat prime. 5 is the third Sophie Germain prime, the first safe prime, the third Catalan number, and the third Mersenne prime exponent. Five is the first Wilson prime and the third factorial prime, also an alternating factorial. Five is the first good prime. It is an Eisenstein prime with no imaginary part and real part of the form 3n − 1. It is also the only number that is part of more than one pair of twin primes. Five is a congruent number. Five is conjectured to be the only odd untouchable number and if this is the case then five will be the only odd prime number that is not the base of an aliquot tree.

5 Down - 7 to go (42 % Complete)

Completed Folfox-5 today and so it is time to recess back into the funk - almost to the half way point - can't wait.  New meds seem to be working so far - hoping that holds throughout the funk.  Up to 131 oz of liquids a day trying to keep up with Alf - any more fluids and i may need to go aquatic.

Amy is doing alot better today after her surgery - yesterday was pretty difficult  day for her but she was able to return back to work today and ready to travel tomorrow.

Project is on schedule to be completed this week - can't wait.

All for now - stay healthy.

Best

C-

FOLFOX-5 Underway

T'was a big day in the White House - while i was in chemo today my beloved nurse Amy spent the day under the knife having a small area of basal cell carcinoma removed from her temple and is now sporting a new 24-hr look.  Aidan thought she looks like Rambo (you can decide...photo follows).  They performed Mohs surgery which is a process of taking off a layer of skin.... testing it and repeating the process until the sample is free of cancer.  Lots of pain in the localized area especially around the eye accompanied by nausea...she cannot sleep laying down and so has picked out the most comfortable chair to rest her head for the long evening.  We are hoping tomorrow is an easier day for nurse Amy.

Rambo says - Always wear a hat in the sunshine.........especially if your a life guard.

Started Folfox-5 today with no fanfare (that is a good thing...) - i had the same nurse as last week and she can stick a needle into your chest with such great accuracy and speed...nice and efficient.... just how i like it.... i have even opted out of the freeze treatment and just let her stick it in .........can't think of a more exciting way to start the day.  It was another full day at the chemo ward....i think i would feel a just a little bit better if i wasn't always the baby of the group...a lot of 60 and 70's...it's interesting and sad to see how the cancer & chemotherapy effects such a diversity of people,  especially the toll it takes on the older folks.  Usually when i first arrive i think they think i am one of the orderley's - quite funny.  The sad part is the stories you see and hear.... there was a gentleman near me today who lost his wife 4 years ago and was diagnosed with cancer 3 years ago - he started chemo at 210 lbs and currently is at 132 - he has 3 daughters and none of them visit or help him, what a trooper, makes you feel like a patsy..........i only know of his plight because i overheard him as he was relaying it to another patient who had lost 50 lbs so far through his chemo treatment but was accompanied all day by his wife and daughter.....its times like these that you really appreciate your family, extended and otherwise.......so i'm sure i don't say it enough but know that i do.

For the medical followers:

• Blood counts and platelet counts are holding.
• Started on dronabinol (Marinol) instead of the ondansetron for the nausea - lot of interesting side effects with this one.
• Continued with the fosaprepitant (aka EMEND) premed - it greatly has reduced the number and frequency of headaches.

Finally, regarding "the" project - today and tomorrow is carpeting and then the master closet gets built out by California Closets on thursday and friday.......new king size bed (finally.....) arrives saturday and we than move out of the basement.....can't wait.....pictures forthcoming.

Stay Healthy
Best
C-

Project Progress

The time is drawing near - the thought of leaving the basement is almost too much to handle - job was supposed to be done this week but it looks like the carpeting will be next week so that puts us a week off - than California Closets will come in and fit out the closet.

Grout was set yesterday - will be cleaned today - glass shower enclosure and final plumbing should go in by Friday - includes a rain shower - should be interesting.

Backsplash and accent tile grout is setting - waiting for final plumbing and final electrical

Base Cabinets and Counter top set - waiting for hardware and final plumbing - no that is not the worlds smallest lavatory - there will be a glass vessel sink over that little hole per the designer (that would be Amy).

Close up of glass tile

 All for now - should have final photos soon - than onto the next one.

Stay Healthy - 

Best

C-

Almost out of the Funk

Me and my favorite nurse

Wholly Guacamole.........talk about a funk - the good news is the headaches didn't show up until day 5 this time and they are less frequent than during the Folfox-3.  The fatigue was seemingly insurmountable starting on Wednesday when the pump and needle were removed ... sorry to all those i missed on thanksgiving...i woke for breakfast at 11:00 and crashed...woke for dinner at 6:00 and crashed...woke up on Friday morning and battled nausea and fatigue all day... Saturday was much the same except for a little break.  Today has been alot better so now i need to start rehydrating as i think the headaches are probably from dehydration - between Alf (my illeostomy...if you've ever seen one the name seems a given) and the chemo, keeping in fluids seems to be quite a logistical problem since the small intestine does not absorb water.... seems nothing can be straightforward..

For all my medical followers  -  - blood counts are holding so that is good news, slight anemia from the chemo but to be expected, iron tests were good so i did not need an iron injection, reduced the Oxaliplatin to minimize long term neuropathy side effects to accepted levels within the historical model....thanks for following and monitoring my goings on...we really appreciate it... there is a very large bbq waiting for you come August... and this time i will be able to eat.

For those that have been asking what is "Folfox" - refer to the following:

The combination chemotherapy regimen known as FOLFOX consists of the following drugs:

• FOLolinic acid (leucovorin)
• Fluorouracil (5-FU)
• OXaliplatin (Eloxatin)

Upcoming Schedule:

Folfox-5 - 12/5/11
Folfox-6 - 12/19/11
Folfox-7 - 1/4/12
Folfox-8 - 1/18/12
Folfox-9 - 1/30/12


Prayers out to Di and her family during this difficult time - your mom is going to do great!!!
Shout out to the Kathy and Joe- can't wait to see your pics of the Great Barrier Reef.

Stay Healthy -
Best
C-

FOLFOX-4 Completed

4 Down - 8 to go (33% Complete)

Completed Folfox-4 yesterday - so far so good with the adjustments they made in the mixology.  Headaches so far seem to be less frequency so dealing with the naseau and fatigue is more manageable.  We are in Sunriver for the holiday.

Hope everyone has a great holiday -
Stay healthy-
C-

FOLFOX-4 Underway

Trying to get Folfox-4 underway - computer problems have delayed the pharmacy so we have alot of restless chemo patients waiting around to get our "stuff'" so i have time to update the blog with the latest state of Chris.

So no out of the funk proclamation after Folfox-3 since we never really did get out of the funk.  The glory days of Folfox-1 are a distant memory.  The nausea, headaches, fatigue and side effects are accumulating and increasing their severity so the reality of what is to come seems more daunting.  I learned this morning that apparently #4 is typically a turning point or bench mark that leads you to the 2nd third which is alot more unpleasant than the 1st third - needless to say the last third....well that's next year.

We are going to try some different naseau meds this time.....a different family of meds i guess is the correct way to describe that....and see if that resolves the headaches....i am hoping it does or this is going to be brutally long.  They are also going to turn down the "ox" in Folfox to reduce the long term effects of the neuropathy side effects that i am having - so hopefully that means my guitar playing gets better.  Wound is looking fantastic i am told....we'll leave it at that unless you want a picture....to think the body can heal itself like that is pretty incredible.......for those that experienced the wound care during those glory days of the VNA and Nurse Amy...thanks...seems so long ago...until i see the scar...than maybe not so long ago.

The ostomy continues to be a pain in my side....no pun intended.  After meeting with my GI, Surgeon and Oncologist i think i am going to stick it out and not reverse it until the chemo is completed.  If we need to take a break from the Chemo due to low blood counts etc... we may revisit the decision but at this point it reduces the variables and i want to trudge forward and get this done.  Interestingly i have also learned that although i am surgically cured in the small intestine, there is a 95% chance the Crohn's will return in the small intestine within one week of the ostomy being taken down and i typically will be symptomatic within 2-3 years.  This could be a problem ....because of the cancer that was removed in the small intestine I cannot go back on to the biologic meds i was on previously (i.e. humira) for at least 5 years so.... who know what awaits....the real issue is the crohn's in the large intestine which is currently "sleeping" because of the ileostomy...it need it to stay that way once i am reversed .......always more fun to look forward to......anybody want to trade intestines for awhile....

Amy's design project is moving toward completion which i scheduled for the first week of December and than they move into the Boys restoom to remodel that.  Casework is to be set today....i will post pictures soon.

Have a great holiday - we are off to Sunriver which should be really interesting.

Stay Healthy

Best-

C-

FOLFOX-3 Completed

3 Down - 9 to go - 25% Complete

Completed FolFox-3 today - just 9 more to go.......unfortunately it is time to recess back into the funk - hopefully it is shorter than the last..........but i doubt it, we'll see.

Met with the surgeon yesterday- the wound is considered healed, who would ever have believed it........... the decision to reverse the ostomy is now mine....lots of variables to weigh......decision forthcoming.

Folfox-4 is scheduled for 11/21.

Stay Healthy - 

Best

C-

FOLFOX-3 Underway

Started Folfox-3 today with no drama which was a nice deviation from the previous (2) administrations.......nothing like a good nurse.....neuropathic side effects are mounting so it ought to get real interesting here in the next few months as we head into winter............more to follow.

i submit the following for your viewing pleasure - a wonderful Glaucomys sabrinus (flying squirrel).......it seems to be grannygirls new pet of choice -  i will let her post the story (hopefully) for some comic relief (at least ours).  It would appear the infamous King street norway rat tale may have been surpassed.

Stay healthy
Best
C-

Project Progress

Project is moving along and on schedule to be completed the first week of December.  We are so looking forward to moving out of the basement.

New windows have been set, trimmed and sealed - waiting for final paint.

Shower tile and recesses are setting and waiting for grout.

Floor tile and shower curb are set and waiting for grout.

Base for cabinets is set and waiting for mechanical - supply air runs through the base.

Door to Aidan's room has been removed and waiting for final paint.

Out of the Funk

Good to be back - finally emerging from the funk of Folfox-2....... seems to last longer with each administration.  Last one was (4) days this was (6) - not a great trend....ask Amy.  So this is my first day without anti-nausea or other medication requirements.  Unfortunately it seems my anti-nausea meds now are also giving me continual nausea and headaches so we'll have to move to a different strategy for Folfox-3..........apparently there is some algorithm that is referred to that will identify a different approach....more to follow.

Had follow-up with my new GI yesterday.... don't remember if i told you but the GI i had for the last (15) years had some sort of emergency medical condition (must be going around) and was put out to enjoy the pasture while i was recuperating on the Cape...really impressed with the new GI - he's seems incredibly knowledgeable....he thinks i should put this whole experience into words...can't believe the stories and thought i had a great sense of humor about it - told him i would think about it - and reminded him i far from humorous during the episodes.  Apparently i spoke to early in the last post - i seem to have re-shed (10) pounds of what i have gained back so we're trying a prescribed Imodium type med that will hopefully help with controlling the ostomy output which has an increased frequency due to the chemotherapy........that's the good news.......the bad news is the side effects are nausea, dizziness and headaches....refer back to the first paragraph to see the problem here.  I am hoping it works....i think the last time i have slept more than 3-hours due to this ostomy was August 17.

Got a great card from Dr. D and Aunt P - cover simply said "Chemo Sucks" - made us all chuckle - who knew they made cards for chemo....says it all.

Hope all is well......stay healthy.
C-

Amy's Two Cents

Hi all - it's Amy. This is about the 5th time I've tried to contribute to "White Happenings" and I am hoping I've finally figured out how to join in. I know you really want to hear from Chris, but I also know that you are probably wondering if you are getting the full scoop... Well, if you know Chris, then you know the answer to that... he is his usual blend of honesty and humor, and as always he is the toughest person I have ever met. Our primary physician told him "don't take this the wrong way, but you are the best person this could have happened to in terms of how you handle things". Of course, there was a complement intended in that, but we still could think of about 3 billion others we'd have rather had it happened to than Chris! Although as a rule, he hates sympathy and is the last person to complain about his own discomfort (unless of course it comes as a result of my cooking, Connor's stuff left all over the place, Sebby's driving practice, or Aidan's soccer team's performance -- they are 1-8). The worst 4 letter word imaginable in his vocabulary is "help". However, I am happy to report that he is starting to loosen up a bit in this regard, and I have made it my personal mission to use this experience to teach him that the rest of us appreciate being needed once in a while!! We are blessed everyday by Chris' physical and emotional resilience, and by the strength we get from the love of our boys, our families and our friends. Chris really appreciates you following this blog, and even more so enjoys the posts and feedback he gets (it's nice to know he's not just writing for his own sake with no followers, so please do feel free to add a comment!) Keep up the prayers too, please! Love, Amy

FOLFOX-2 Completed

2 down 10 to go

 

Completed 2nd round of chemo yesterday - fortunately with less fanfare than on Tuesday - suffice it to say it is easier to remove a needle than to insert one.  If all goes in line with the 1st round i will be preoccupied with sleep, fatigue and nausea for the next few days before exiting the funk and gearing up for the next round.  I have a new neuropathic side effect to deal with which is a sensitivity to cold.  If i touch or drink anything cold/cool - my fingertips, toes and throat go to pins and needles such that it is painful to touch or drink anything until they are heated/warmed up.  What a great side effect for the winter months eh.  As you can imagine i will not be playing hockey this year and skiing does not look good either.

So far everything else seems fine - illeostomy is still a nuisance but swapping it out is becoming quicker and more efficient - the surgeon will not discuss reversing it until the wound is fully healed which i am hoping is soon- about a month maybe?  Currently i no longer need to wear any dressing to protect the wound - seems like it wasn't that long ago we had to deal with the 2-a-day wet/dry daily dressings.  Hair is thinning but not clumping out and the weight seems to be holding - i have gained back about 20 of the 30 pounds lost in the ordeal - not exactly the 6-pack abs i asked the surgeon for but............

All for now - FOLFOX-3 is scheduled for 11/9/11 - stay healthy.

Best
C-

Hey Uncle Chris.. It's THE Jilli-pepper. First of all, I have 1 question- WHERES THE FISH??!! My mom just turned on your blog, and I was so excited to feed the fish, and then I saw that they weren't there. I'm very sad. :( I really hope that you are feeling better, I always wish for the best, and I love you. Hope to see you soon and maybe take you on yet again, in a "friendly" game of ping-pong. Love you!!

xoxoxox,
Jilli-pepper

Thx for the nice thoughts Pepper - figured out how to get the fish back just for you - we're not as technical as your generation don't ya know.  I look forward to the challenge back at White's Landing.  If you make it to the Cape before me don't forget to play the Breedlove - i left the tuner and capo there as well (front closet).  Hope you are keeping up the playing so we can play together again next summer - hoping that i may be able to promise there will not be anymore "excitement" either.

xo - how i miss those crispy ribs at Centre Cafe.
UC-

FOLFOX-2 Underway

Started 2nd chemo treatment yesterday, another long day - 9 - 3 p.m. - it did not start very well - it took an hour to get the needle in my chest after (3) attempts - they ended up injecting lidocaine in the area and using a 1" - not exactly a great way to wake up - thought i was pretty immune to needles after the last 25 years (especially the last 6 months) but for some reason i can really get myself worked up over this new little wrinkle.  Apparently there is still some swelling at the cath site from the surgery which caused the problem with the needle insertion - they promised it was an unusual morning and i am going to hold them to it.

Nike is only 20 minutes away so we have a nice routine (weather permitting) where i go to work with amy and walk to the OHSU Knight Cancer Institute so i get some exercise in before and after the infusion and Amy comes over for lunch - good stuff and allows amy to keep up/catch up with work.

We were treated to a great supper last night from Pat Sanchez (i forgot to get a photo), a co-worker of mine from Opsis and an amazingly thoughtful and caring person that i have had the privilege to know for the last 12 years - thanks pat we all loved the meal which is not any easy task with (3) boys - at least our (3).

Stay healthy
Best
C-

Project Progress

By popular demand- an update from the basement dwellers - here are the progress photo's of our little construction project to keep me occupied while not falling asleep.  Electrical and Plumbing inspections were passed last week so the walls can now be covered.  This week is final wall prep before the tile setter arrives and installation of the windows - the floor will be sloped on thursday for the shower.  The room is so small it is difficult to get any good pictures so sorry in advance.

 THE OLD

 

This is master bathroom as i left it those many years ago after one incredibly strong pot of coffee (for those that don't know the story i will save you the time - for those that are privy to it - be it know that a newspaper was found by the contractor in the remains and it was not as long ago as the misses would like you to believe - but it was along time ago.

THE NEW (this week)

 

Inspections passed - wall cover in progress - windows to be replaced this week in the master

bedroom.  Benefits of an architect for a client - we just draw the plans on the wall for you.

The GOOD 

(no fried chicken and beer in that lockerroom)

 

The BAD

and The UGLY

 

Chris....Jillian discovered that you can feed those fish! Seriously--I'm feeling unbelievably tech savvy, although I did just manage to learn how to manage an excel spreadsheet! Hope the day is going well...... :)

oh yes - should have mentioned that - the fish need to be fed.  Click on the blue for food - leave it to the Jilly-Pepper.  Tell Hailey i said Hi- and "smile".

C-