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