When the rubber meets the road

I didn’t even get to the point of taking the full strength Lomatium. I so hope this means it’s working.

Sometimes I wonder why I am keeping this blog. I just suspect that what I am learning isn't just for me. It can make me feel exposed and vulnerable, especially since I have no idea who reads it. But it has been a journey and this is where I keep track of the details should I, or someone else, need to find them someday. I don't usually look back at past posts so I probably repeat myself. I am in Colorado because I was able to push myself through the first 9 weeks of the semester when it is most important for me to be at work. I teach a couple 1 unit classes, which must be done as overload (making the week long), because of the grant we have with the state. Suzi, who works with me and is incredibly supportive considering the weight of my being gone from work falls largely on her, could tell I was struggling. I often would feel OK in the mornings but by evening my ankles and wrists are swollen. My hands and feet hurt terribly, even making it hard to drive home. A couple time...

Hi there. Over a month ago, I had lymph nodes taken from my neck and a bone marrow biopsy to confirm or modify the diagnosis, send tissue to Dr. Nagourney in Long Beach, and to see if the cancer had spread to the bone marrow. The great news - it is not in the bone marrow. I am so very relieved. To me, this means I still have time to figure this out, with God's leading. I don't have to panic. When people ask for advice with cancer, that is my only real advice. Don't panic or rush, like the system wants you to. It took years to get here - you have time to think, pray, read, research, and learn. We met with Dr. Nagourney. I was a bit anxious because I know he is essentially a conventional oncologist who focuses on testing people's tissues to decide on what drugs to use to deal with cancer. He usually works with people who are desperate for answers after exhausting all other avenues. He immediately stated in the meeting that his "gestalt thoughts about my condi...

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...