What a summer!
I hope this finds you and yours well and enjoying the summer!
When I wrote the last post, I was excited to be going to see Dr. Song, an ENT Surgeon in CO. It was a very interesting meeting to me - to have a doctor describe himself as a "trained monkey" three different times and tell me flatly that he will forget me the minute he walks out the door so it's now or never and on his schedule or not at all.
I got tearful and told him I was trying not to get emotional on him. He softened a bit and I explained about the once-in-a-lifetime trip coming up with our kids and grandkids. He found a date we could both do, after the trip, and I was happy.
He was to take the left cervicle node and he wanted to biopsy the tonsils which would be very uncomfortable with a high chance of bleeding. Ugh.
A few days later I got a message from Dr. Haverkos, the T-cell Lymphoma specialist at Univ. of CO Health. He told me that they could not send tissues to Dr. Nagourney in Long Beach because they need all the tissue for their own testing and because they don't send to labs they aren't familiar with. Wow - in this system, the customer/patient really has no say about much. I shot back an article from the NY Times about Dr. Nagourney, thanked Dr. Haverkos for checking on it, and told him I would think it and pray it through. I never heard anything back. I will contact him if I need him.
Another door shut. Thank you, Lord. I know you are at play.
So I contacted Dr. Nagourney again to tell them what's going on. In a few days I had a new referral in Torrance and they wanted to see me right after we landed at LAX from Alaska with students. Suzi, who works with me, came and got the students and dropped me off on her way back to the college. Andy then brought my car up to get me.
Long story short, I felt horrible, dealing with uncontrollable chills and a raging kidney infection. I'd been trying to take care of a bladder infection on the trip with the natural things I used but I just couldn't beat it. I knew I had pushed my body too far. And now I needed to face a surgeon with it all. Not my best day.
Anyhow, Dr. Carie Collinane, Oncological Surgeon, came in and it was like taking to a real person. I gave her the readers digest version. She told me that, in medical school, she spent a month with a conventional doctor that had also gone deep into Chinese medicine and thoughts on Chi. She flatly stated that we don't know why some people get well and some don't, because we are all different. She also said adamantly that conventional treatment works but only for about 80% of people (I could have challenged that number but I didn't have the ammo with me). She said that we need to be more responsible to the other 20% and that's where Dr. Nagourney's testing can help. I asked her if she thought I needed a new bone marrow biopsy. If the cancer is in the bone marrow, that puts it at stage 4. She called Dr. Nagourney to confer and they decided it was a good idea, which I do too. I believe info is power.
So....unlike 1/2 dozen surgeons and ENTs I've seen, this surgeon believes you can, and should, actually do multiple procedures at once if you can, to save the patient from multiple trips under anesthesia and all that goes with a surgery. She will #1 take a new biopsy and send it to a pathologist she said she trusts fully, #2 sent at least a gram of tissue to Dr. Nagourney's office, directly across the street from Long Beach Memorial, and #3 a team will come in and take a puncture from my hip bone to test it for staging.
Can you believe it's been 2 1/2 years since this journey started? What a ride it's been. Why I've done so well? - 1 reason. Prayers by so many. There are no words to thank busy people for keeping me in their talks with God. He has led us step by step and I know I am safe. Of course I question, especially when I feel terrible or a new symptom pops up like a night with night sweats and a rash that comes and goes, "B symptoms." The chills the other day must have been from the kidney infection because they left as the antibiotics took hold. But, I have felt no other choice but to follow step by step and not to panic. I am cleaning up my diet after all the traveling. I wanted frozen yogurt so badly today but chose a clean juice instead. I'm pretty proud of that!
We will see what the new testing shows.
Take good care! Thanks for reading. xoxo
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