Daylady from the fire zone...


Hi Ladies!  I have not been checking in too much lately but it is a little crazy here!  I live in Sonoma County so for the last week it has felt a little like living through Armagedon.  We have been safe, but my daughter's inlaws were evacuated and are living with her and her husband right now.  We all feel like last night things turned forthe better.  With any kind of luck, the worst should be over by this time next week.  So many people we know have lost everything.

I finally wrote to Dr. Herzog/Germany and told him that I did not think the timing was right for me to come back to Germany in early November.  I have been dealing with thrombosis and edema ever since returning from Germany last time and it is still not clear how they want to treat it which makes me a little nervous about getting on any 12 hour international flights.  It also seems that once the edema surfaced, the Vit. C infusions (weekly) made it ten times worse.  By the time we figured out the connection, the clock is really starting to tick down and still have followup ultra sounds, a New PET Scan and blood work that all needs to be done and has now been canceled because Kaiser in Santa Rosa was evacuated and is still on lockdown.  It just all feels like too much going on all at one time.  Body and soul are in deep need of respite after what they have been through in the first 8 months of this year!

I worry that if I don't return to Germany that I will be thrown to the wolves of conventional treatment yet again, which also worries me a lot.  I have a new oncologist now, who seems very open minded, but so far I'm not sure what that is goingto look like on a day to day basis.  He did confirm for me that there actually IS a policy that says if the stage and age of the patient dictate that the probability of a good outcome for a particular procedure is less than the risk involved, they are not bound to offer the procedure.  That is why I had to go half way around the world to find out about laser ablation and chemoembolization (they actually do both procedures at Kaiser).  He said he doesn't necessarily follow guidelines and he does whatever he feels is in the best interest of the patient.  I'm still trying to take it one step at a time, and fortunately, I still feel good and am able to do most of what I want.

About the only complaint these days is a really low energy level.  (!!!)  But I am discounting some of that as my body gets used to cannibis as an alternative for pain relief.  That has been an interesting adventure!  So much of this is trial and error.  You try getting information out of your regular doctors, or even your naturopathic oncologist (who recommended it in the first place!) and find out right away that they are ALL in favor of your going there, and none of them know anything about it, or how the system works or anything (they'd risk losing their licenses).  I've been at it for a couple of months now and have found several helpful products as well as CBD to THC ratios that work for me.  Had one hilarious incident last week.  My dispensary was burned out in the fires, so I had to find a new one.  Last week I went to one called Mercy Wellness in Cotati.  They could not have been nicer.  They carried the product line I had been using but also introduced me to another product that used a slightly different process so was effective much faster.  All good.  The people behind the counter are all young, and probably not the kind that I would gravitate to if I met them on the street, but I have been so impressed by how caring and patient they are in dealing with their gray haired senior citizen!!  Well, as I am paying for my purchases, they are loading me up with free goodies because I am new and as I walk out the door this girl hands me a cookie which I don't think too much of.  On the way home, I guess I kind of absentmindedly ate the cookie.  By the time I got home I was starting to wobble up the stairs and within 20 minutes I was a complete and total fruit loop!!!  My husband thought it was hysterical.  I didn't.  Lasted about 3-4 hours.  No more cookies for me!!

Anyway Ladies, just wanted to check in and let you know how things are going.  I suspect I am home for the rest of the year.  I won't know if things are going to change as far as treatment goes until after the PET Scan and CA 125 but right now it is hard to even think that far down the road.  Holding the best for everyone!  Hugs! Helen


  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member

    Thanks for update Daylady and stay safe. So many things to think about all the time.  It's exhausting isn't it. I recommend you watch the series "Disjointed" on Netflix about a pot dispensary run by Kathy Bates.  Hilarious. 

  • ConnieSW
    ConnieSW Member Posts: 1,681 Member
    edited October 2017 #3
    Wow, Helen,

    it's good to hear from you but ,oh, my, your life is really complicated. I like the sound of your new oncologist. Hopefully he'll be able to be a good partner with all the decisions you will be making. 

    All the catastrophes the US has been undergoing just make me so sad for everyone involved. My dear friend's daughter has evacuated from Santa Rosa. Her car filled with what she could take with her was broken into and her passport, laptop, etc stolen. Horrible. 

    Take care and stay in touch. 

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2017 #4
    Helen that is some update!

    I enjoyed so much reading it all and the laugh at the end was priceless Laughing  I know what you mean about that and sure wish someone could just say, "this is it, take it and be painfree and well" wouldn't that be great?!  Take good care of you- I think you are right to postpone things til you are sure you can travel and who knows, maybe this new Dr. will finally take good care of you here?!  ((((HUGS))))

  • derMaus
    derMaus Member Posts: 558 Member
    Glad You Checked In

    Hi Helen, so glad you checked in and brought us up to date, fires, cookies and all. Your new oncologist sounds much more promising than the old one, and I'm hopeful that you can get something more flexible out of him. Please do keep us posted, you're in my prayers. B

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited October 2017 #6


    So glad you survived the fires. I didn't realize you lived in that area. I had PM'd Chris to check on her and she is about 100 miles from the burn so is OK as well. I pray the wind stays calm so that the firefighters can get this out. What a year this has been!

    Love your cookie story. That is one worth repeating a bunch of times!

    Please let us know what you find out after your scans. I hope they show major improvement.

    Love and Hugs,