When the rubber meets the road

Yesterday went very well. I could focus on the 3 punctures for an IV, the fears, the soreness I now feel as my neck is swollen and glued shut after having been cut open and my left hip bites me every time I move. Those things are so easy to let go of as I am just so relieved and thankful for all the comforts of medicine we have today and that it all got done. Dr. Cullinane actually took two lymph nodes and the tissue did make it across the street to Dr. Nagourney's office, as well as to the pathologist at the hospital. I am so relieved that all 3 goals of the day were accomplished when there were so many roadblocks over the past months. Oh ya, as I am incredibly relieved that I woke up able to smile. When I went to bed last night, only 1/2 my smile worked at all, even though I was no longer numb. The nurse at the hospital was very concerned as was the RN I live with in CA. As I went to bed, I was really concerned it could be a problem. To wake up this morning with the ability to ...

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 be...

As I wrote about it in my last post, I was excited to get biopsy tissue to Dr. Nagourney in Long Beach. He uses this tissue to test for chemo sensitivity and also to look for "off label" drugs that might work on a particular person's cancer. He has had tremendous success this way. As he says, "The drugs don't know what they were designed to do." In other words, some drugs, like Metformin for diabetes, have worked to control cancers with much less toxicity and sometimes when all other options have failed. He referred me to a surgeon in Long Beach and it got very weird from there. The office manager explained to me from the beginning that I would be 100% responsible for the bill for surgery and THEN they would try to bill insurance. I couldn't understand why they couldn't get preauthorization like everyone else. Finally I came to understand that insurance companies have tagged Dr. Nagourney's work as voluntary and not of medical necessity. So, I ...

Since diagnosis, I have looked for ways to be duplicatable in what I'm doing. In other words, it makes no sense to me to do things that people can not afford.  As I've shared, I have the benefit of an inherited business that pays for all the alternative things I've tried that are not covered by insurance. I am not spending nearly what I did at first for several reasons. I want to live but I guess it is my way of finding meaning in this whole thing. I need to find ways that work for me that will also work for others. On the other hand, ice water fills my veins when people ask for my opinion or are newly diagnosed because every month or so I learn something I think everyone should know and it can be overwhelming. In the end, I have to trust for others that God will show them their path just as He has so personally shown me mine. Until the PET Scan in March, I also felt that I had nothing to stand on because I hadn't really seen any tangible results. Oncologists and spec...

For good or bad, I’ve been completely honest on this blog. It can make me feel exposed, but my prayer is that, by being transparent, God can use this to help someone else in the future. It is so helpful to think there is meaning in all of it – that it is all not just a haphazard series of events that lead to nowhere.  We came to Chicago to the Block Center for Dr. Keith Block’s opinion. He is an integrative oncologist which is very hard to find. They have a day long series of organized appointments they put you through as their new patient. Then you go from there, deciding if you want to get treatment at the center in Skokie, Chicago or from home. There are good reasons to travel there versus doing chemo the way others do it. It's called chronomodulation.  The place is more impressive than the other places I have been to – the building is large and you can see the sign on the big 3 story glass building from the freeway, “Block Center.” You are greeted by receptio...

As I re-read my last post, I am vividly reminded of where my head was at when I wrote it. I was at peace (again) with jumping into conventional treatment because I was so certain I was doing worse. It had happened once before when we had scheduled chemo and all that goes with it, just to have the oncologist miraculously not be able to find the swollen lymph nodes that were there before I got to the appointment and were back a couple hours after. Advice I received very early on has helped me tremendously. She told me, "Your body will tell you what to do." and "You can change paths if things change." Because I believe Jesus is who he said he is, I have leaned on the fact that God will show me what to do through my body. And, he would show me if I need to change direction - and he has again. Monday, I was driving to the doctor appointment where I was going to get the results of my annual PET Scan (the doctors want them every 3 months to monitor my "fast grow...

Hi There, I've felt kind of badly ever since the last post. I was in a very down place for a few days. But a new breeze is blowing. I've gone through the grueling task of getting set up with yet another doctor - the one in the Chicago area, Keith Block. I've moved the appointment up to April 8. Andy will go with me, of course. What would I do without my Drewbud? This could change once we meet, but I suspect Dr. Block will suggest we start CHOEP chemo. I have no idea if he'll advise the clinical trial, adding Optivo. He uses chemo differently, with Chronomodulation, that makes it safer. You can google it if you want to know more. I don't fully understand it yet. I'm sure he also has his patients fast before, during, and after chemo with the studies showing that fasting metabolically protects healthy cells while making the chemo more effective against cancer cells. He also puts all the other integrative stuff in place. We will probably fly in to Chicago every ...