UPDATE NOVEMBER 10th
Meeting ONE with NEW Local Oncologist
Dr. H is an Excellent Oncologist/ his NP are very caring..... WE are very happy with THEM- I feel LUCKY I had the fore-site to set this up in advance (6 weeks to get HERE)
Now that hubby's care has taken a curve ball it is as if the stars/ moon/ and sun fell into perfect alignment.
Mikes records had been transferred (by me) from diagnose Oct 2012, to October 2014..... I had a few entries the past 3 weeks to get him up to speed- Nov 3rd CT scan, medications changes, steroids, etc
He is knowledgeable, compassionate, talks openly & covered a lot of ground. He was already prepped when we came in and took a ton of notes as we spoke...
ALL I CAN SAY IS WOW..... My Secret thoughts were "I Wish I knew YOU two years ago"
He is making an immediate referral to a recommended Radiation Oncologist at UCSD- (he knows him & says is excellent)
BUTT if HE not available immediately- He is pushing to the Next best available Radiation Oncologist team member at UCSD-
His office is third option- I am to call WED to his nurse IF UCSD has not contacted me by mid-day (tomorrow is Veteran's Day/ closed)
We have follow up appt in 6 weeks- unless anything urgent comes up- such as anything necessary to assist him with side effects of Radiation- WHICH I want to research NOW
We got new prescriptions for cough syrup- he will also help weaning off steroids- seems HE does not like them either with Mike's mild diabetes issue (Steroid throws glucose levels through the roof)
He said we were going to take this one day at a time- one step at a time- see how IGRT radiation goes & proceed forward depending on how MIKE feels.
He says we have gone a great route so far- he would have recommended the exact same steps- & IF Radiation is Successful, and more trials ARE in the cards FOR Mike in the future, he will ASSIST
(I AM MAJORLY RELIEVED TO HEAR ALL OF THIS) I cannot tell you how long I have waited to hear those words from umpteen Dr's, amid many long sleepless nights, praying & hoping I was choosing the right path for my hubs.
If Trials are NOT in his future due to compromised lungs/ any health issues........ we will go down the available avenues one step at a time- QOL first & foremost and.... we now have a Confidant Captain at the helm of our ship.
Then the conversation shifted subtly & gently to The BIG ELEPHANT in the ROOM.... I know "Jumbo" intimately.
Jumbo (or the Mortality/Reality of advanced Colon Cancer Stage IV) has stared at me daily in my research & chats, (and as most of you can Understand) one subject that Mike & I have rarely gone into lengthy detail
I think it threw Mike off balance when the DR. starting talking about end of life matters- DNR orders, hospice, palliative care etc. He said simply it is best to discuss now, when there was not urgency/ emergency facing us
I personally was impressed the Dr brought this up in meeting ONE- a very Brave move & one he handled with grace, gentleness and a great deal of compassion. This DR is a Class Act and Mike was grateful for the conversation
As I told Mike- this should have been discussed two years ago- four ONC's ago & it does not mean he is dying tomorrow, next week, next month or in 6 months- 1 yr
They are subjects we do need to discuss then put away- another check marked box will soon be off our plates regarding the IF's & WHEN the time comes- a few newly identified medical/ business I's to dot, T's to cross
He & I went deeper along these lines at home- VERY TOUGH.... but both somehow relieved we can openly discuss some of our wishes & express our thoughts.
To top off my feelings of comfort with our new team's ability to follow through- their scheduler called tonight- following the Dr's request- to arrange an appointment for CBC's and a CEA test Tuesday November 18th
Next on agenda-
Researching side effects for IGRT radiation so we know what to expect- PLEASE chime in if possible
Lining up radiation appts/ after care
Getting my butt to our Business ASAP- so icing my foot- it has been a bitch the past 3 days (going to try to go in tomorrow)
Elephant I's and T's
A special Thank You & Hug to our well wishers,
Another BIG Brick in the Wall
Vicki & MY Mike