Set backs and the wild ride
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 asked the D.O. I see if she could be the referring physician.
After all, Dr. Block's oncologist in Chicago flatly stated that she would not treat me without a new biopsy because she doesn't believe I have T-Cell Lymphoma or I would be much sicker. "After all, you've only done a little vitamin C." She is blind and, like the others, wants to stay that way. This world of alternatives is just too sticky and I have a vague understanding of the pressures doctors have in maintaining their credibility with each other and their licensing board.
Anyhow, the D.O. in Irvine sent a new biopsy referral but the office still called me over and over to make sure I "brought my credit card" to pay for everything. Finally, after the office manager rudely got on one of the phone calls are repeatedly stated, "As I've explained to you...," "As I've said..." I tearfully told her that this is just stupid and that no other medical office operates this way and that is is cruel to treat people who are dealing with cancer this way. I told her to cancel the appointment. She said, "fine" and hung up.
I had a good cry out of frustration and some confusion and now I realize that God was shutting those doors I've asked him to shut, again.
And...I had gone to see an ENT the week before this and he scared me about the biopsy as the node they want to take is right up against the jugular vein and "what if something happened when you are so stable."
However, after he scoped my nose and throat, he couldn't give me any answers as to why my tonsils and very very swollen, making it hard to talk and sleep. Of course, he prescribed antibiotics and sent me on my way, after giving me a good lecture about how he thinks I am trading 'knowns' (chemo) for 'unknowns' (unconventional treatment) when, if it were him...he would risk the results of the knowns. Of course, he didn't want to know any details of what I am doing. And, I did tell him that there is a lot more science behind what I am doing that he knows about. Again...he was completely uncurious.
The symptoms of the swollen tonsils (it also feels like the roof of my mouth is collapsing when I try to relax to sleep), the swelling that is now somewhat permanent in my wrists and ankles, and the intermittent inflammation that can be very painful and moves around my body causing aches and pains that feel like a broken ankle one day and like my finger nails are going to pop off another, are getting to me.
Last week we went to see Dr. Haverkos, the T-Cell Lymphoma specialist for UC Health in Colorado. I wasn't planning to see him but Dr. Block warned that I need a conventional oncologist in my camp that specializes in t-cell lymphoma, in case a big breakthrough comes along. If I am not a current patient, it would take forever for me to benefit from it. Last year, Dr. Haverkos brought in an "expert" and the two of them belittled us a bit and were very forceful in wanting me to get into treatment including a clinical trial of EPOCH (5 chemo drugs, all with their own functions and side effects), adding Nivulomab (Obtivo). This time, Dr. Haverkos was much more interactive and respectful. Maybe because he just can't believe that I am not sicker. On the other hand, he was the first to confirm that the swollen tonsils, which are lymph nodes, and the inflammation and weird aches and pains are all symptoms of this lymphoma. He ordered a CT scan of my head (and others I haven't done yet because I am not ready to jump into treatment anyhow), shows thickening of mucosal tissues which is also a symptom. In other words, although my last PET scan shows stability, he says that the lymphoma is advancing and, again, I need to get into treatment. And he said the words again, "People just don't wait with this!"
I asked how the clinical trial is going for others. He said that, although it is a very small sample size, he's had 100% positive response rate. He explained that the chemo drugs all do something different to battle the cancer cells - some break up the cloaking that cancer cells have that make your immune system not recognize them as a pathogen, for example. Then, the Nivolumab is an immunotherapy that enables the immune system to go in and kill the cancer cell. He makes it sound all so innocuous and elegant.
As we continued to talk, he let it slip that a whole 3 people have been in this trial so far. In an entire year, that's all the people they could find so far. I guess it really is a rare form of t-cell lymphoma.
He also said that they can use lesser amounts of the chemo drugs with the immunotherapy addition which felt promising.
Then, I gulped and did something that I wasn't sure I would do. I explained that the oncologist in the Chicago integrative oncology "Block Center" suggested a new biopsy and I also told him about Dr. Nagourney in Long Beach. He took some literature and said he didn't see why the pathologists wouldn't accommodate my request for the tissue to also be sent to Long Beach for testing. I was shocked. He even said that, depending on Dr. Nagourney's testing, he may modify the chemo or other drugs he would give me as treatment. Of course, if we modify the chemo, I can't be part of the clinical trial.
So...I have an appointment tomorrow with an ENT surgeon Dr. Haverkos referred me to. I hope to have the biopsy Monday of next week to send the tissue to Dr. Nagourney (it needs to be sent early in the week to assure it doesn't sit around over the weekend and gets to Long Beach "live." We leave for a very exciting and special family vacation next Wednesday. When we get back, I need to get to CA for a work trip taking students to Alaska for research. The conventional world of medicine thinks I'm crazy to deal with it all this way...without rush and fear. I need to work after Alaska and teach classes until the end of October so I really don't plan on any chemo-type treatments until the beginning of Nov. at the very earliest. On the other hand, it will depend what the new biopsy says and testing by Dr. Nagourney indicates. He may just have an easy thing for me to try to see what happens. To be in remission would be like a whole new life. He warned me that some drugs would make me ineligible for a stem cell transplant down the road, which most oncologist think of as the only hope for cure. There are lots of moving parts so one foot in front of the other. Oh how I long to get off this ride but I chose to trust that God has my very best good as his perfect will - in this and everything else. Look what he's done so far....
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 asked the D.O. I see if she could be the referring physician.
After all, Dr. Block's oncologist in Chicago flatly stated that she would not treat me without a new biopsy because she doesn't believe I have T-Cell Lymphoma or I would be much sicker. "After all, you've only done a little vitamin C." She is blind and, like the others, wants to stay that way. This world of alternatives is just too sticky and I have a vague understanding of the pressures doctors have in maintaining their credibility with each other and their licensing board.
Anyhow, the D.O. in Irvine sent a new biopsy referral but the office still called me over and over to make sure I "brought my credit card" to pay for everything. Finally, after the office manager rudely got on one of the phone calls are repeatedly stated, "As I've explained to you...," "As I've said..." I tearfully told her that this is just stupid and that no other medical office operates this way and that is is cruel to treat people who are dealing with cancer this way. I told her to cancel the appointment. She said, "fine" and hung up.
I had a good cry out of frustration and some confusion and now I realize that God was shutting those doors I've asked him to shut, again.
And...I had gone to see an ENT the week before this and he scared me about the biopsy as the node they want to take is right up against the jugular vein and "what if something happened when you are so stable."
However, after he scoped my nose and throat, he couldn't give me any answers as to why my tonsils and very very swollen, making it hard to talk and sleep. Of course, he prescribed antibiotics and sent me on my way, after giving me a good lecture about how he thinks I am trading 'knowns' (chemo) for 'unknowns' (unconventional treatment) when, if it were him...he would risk the results of the knowns. Of course, he didn't want to know any details of what I am doing. And, I did tell him that there is a lot more science behind what I am doing that he knows about. Again...he was completely uncurious.
The symptoms of the swollen tonsils (it also feels like the roof of my mouth is collapsing when I try to relax to sleep), the swelling that is now somewhat permanent in my wrists and ankles, and the intermittent inflammation that can be very painful and moves around my body causing aches and pains that feel like a broken ankle one day and like my finger nails are going to pop off another, are getting to me.
Last week we went to see Dr. Haverkos, the T-Cell Lymphoma specialist for UC Health in Colorado. I wasn't planning to see him but Dr. Block warned that I need a conventional oncologist in my camp that specializes in t-cell lymphoma, in case a big breakthrough comes along. If I am not a current patient, it would take forever for me to benefit from it. Last year, Dr. Haverkos brought in an "expert" and the two of them belittled us a bit and were very forceful in wanting me to get into treatment including a clinical trial of EPOCH (5 chemo drugs, all with their own functions and side effects), adding Nivulomab (Obtivo). This time, Dr. Haverkos was much more interactive and respectful. Maybe because he just can't believe that I am not sicker. On the other hand, he was the first to confirm that the swollen tonsils, which are lymph nodes, and the inflammation and weird aches and pains are all symptoms of this lymphoma. He ordered a CT scan of my head (and others I haven't done yet because I am not ready to jump into treatment anyhow), shows thickening of mucosal tissues which is also a symptom. In other words, although my last PET scan shows stability, he says that the lymphoma is advancing and, again, I need to get into treatment. And he said the words again, "People just don't wait with this!"
I asked how the clinical trial is going for others. He said that, although it is a very small sample size, he's had 100% positive response rate. He explained that the chemo drugs all do something different to battle the cancer cells - some break up the cloaking that cancer cells have that make your immune system not recognize them as a pathogen, for example. Then, the Nivolumab is an immunotherapy that enables the immune system to go in and kill the cancer cell. He makes it sound all so innocuous and elegant.
As we continued to talk, he let it slip that a whole 3 people have been in this trial so far. In an entire year, that's all the people they could find so far. I guess it really is a rare form of t-cell lymphoma.
He also said that they can use lesser amounts of the chemo drugs with the immunotherapy addition which felt promising.
Then, I gulped and did something that I wasn't sure I would do. I explained that the oncologist in the Chicago integrative oncology "Block Center" suggested a new biopsy and I also told him about Dr. Nagourney in Long Beach. He took some literature and said he didn't see why the pathologists wouldn't accommodate my request for the tissue to also be sent to Long Beach for testing. I was shocked. He even said that, depending on Dr. Nagourney's testing, he may modify the chemo or other drugs he would give me as treatment. Of course, if we modify the chemo, I can't be part of the clinical trial.
So...I have an appointment tomorrow with an ENT surgeon Dr. Haverkos referred me to. I hope to have the biopsy Monday of next week to send the tissue to Dr. Nagourney (it needs to be sent early in the week to assure it doesn't sit around over the weekend and gets to Long Beach "live." We leave for a very exciting and special family vacation next Wednesday. When we get back, I need to get to CA for a work trip taking students to Alaska for research. The conventional world of medicine thinks I'm crazy to deal with it all this way...without rush and fear. I need to work after Alaska and teach classes until the end of October so I really don't plan on any chemo-type treatments until the beginning of Nov. at the very earliest. On the other hand, it will depend what the new biopsy says and testing by Dr. Nagourney indicates. He may just have an easy thing for me to try to see what happens. To be in remission would be like a whole new life. He warned me that some drugs would make me ineligible for a stem cell transplant down the road, which most oncologist think of as the only hope for cure. There are lots of moving parts so one foot in front of the other. Oh how I long to get off this ride but I chose to trust that God has my very best good as his perfect will - in this and everything else. Look what he's done so far....
Comments
Post a Comment