Sorry again for the prolonged absence. I'm still kicking.
Insurance is being a pain about paying for my Keytruda so the battle is on with them. My oncologist is quite peeved as we have proof it was approved then all of a sudden they went back and changed their mind and denied every treatment I have had (at 31,000.00 a pop) just had my 11th treatment this week, they have told me not to worry, I won't have to pay a thing. They have other ways of getting it covered for me. I called the insurance myself when I first found out about the denials. The representative I spoke to said it was because it was expiramental - sad that I had to inform him that the FDA had actually approved it for use in CRC treatment in May... Then they started saying it wasn't medically necessary - um, hello this stuff is the only thing that has succeeded in beating back my cancer therefore it is the main reason I am alive... Not medically necessary my ass.
Still dealing with the divorce stuff, getting closer to actually separating. Should be by the end of next month. Good news is I got my settlement from him so I can go buy Bean and I a nice house. We are staying right here. He is looking at jobs where his hussy lives. He will still be close enough to see Bean pretty regularly, we would split the drive - with him doing the majority, driving for long periods is still painful for me.
Bean and I are taking a long weekend in Myrtle Beach next week, a little vacation for the two of us before she starts school again.
STILL waiting on surgery, the good news is Larry is now down to 7 cm from 11 (at least that was the measurement when I saw the surgeon in June) she wanted 2 more months of treatment, well 4 more treatments really. Last one for that will be Sept 6th, have a CT scan scheduled for the 5th. This time I am going to be very frank with her. I cannot do this yo-yo anymore. Get our hopes up, then get told not yet, more treatment. It's really starting to affect Bean. Her anxiety is so bad she has started to pick at the skin on her arms and legs. There are so many scars and scabs it breaks my heart. I have been working with her doctors on anxiety medication and she is seeing a therapist. It seems like we may be finally getting somewhere, her skin is healing up and I am not having to tell her to stop all the time. She finally opened up and said she was not scared of the surgery itself, she's afraid they are going to operate on me so many times that my body won't be able to handle it and I will die, or "poof" as she put it. Getting it out finally I think has really helped her. The poor kid has been through so much in the last 2 1/2 years (I can't believe I have been fighting it for that long. No wonder I am so dang tired!)
So that's it in a nutshell. Been really busy trying to focus on Bean and get her to a good place. Lots of reassurance and time together.
Again, sorry for the disappearance, I will try to pop on more often. Things are just really crazy right now.
Love you all, still keep every one of you in my thoughts and prayers.
CRguy, thanks for the email - I did get it, just took me a bit to get some time to hop on, I also got a hey what's going on - CC is wondering about you on FB today so I figured I should sneak out to the front porch for a few and update. Now it's time to get back to the Bean, hugs to all of you. You guys are amazing.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016