Medical update #1 4/2/17
Hi. Thanks for caring to the point where you want to know what is going on. I am finding it really hard to tell people I have lymphoma and then I have anxiety about making sure the people who care about me know what is going on, while I don't have the energy to be on the phone, texting, and emailing constantly. And I want those with me to be able to be present and deal with this too.
But, please. I have one request. If you feel like reaching out - do. Don't question yourself. If you are praying, that is what I need most so don't feel like I am wondering if you care if you are not in contact at any particular time. I know how hard it is to know what to say and do at times like this.
Let's make a deal - I will be honest and I won't answer the phone or jump to the email or text unless I want to - at that moment. OK? Let's all give each other a lot of grace. I have said and done the 'wrong' thing in stressful times so many times...let's just give each other lots and lots of grace.
So much for the short summary of medical details (-: Here is a summary of the medical stuff so far.
For the past year or so I have had a hard lump behind my right ear that my MD (Integrative/Functional Medicine), Dermatologist, and her plastic surgeon all said was a cyst that I could leave alone.
I have a history of nose bleeds from one nostril, which I have had cauterized twice before. I missed Christmas Eve this year because I couldn't get one under control. It is always worse in Colorado (which is where I was) because of the dryness.
I wasn't having bad nosebleeds once I got home so I kind of put off making an appointment. But I noticed 2 small hard marble-feeling bumps in front of my left ear. I had a dentist appointment and asked about it. They suggested an ENT. Thankfully I made the appointment, thinking I needed to get the veins in my nose cooked anyhow.
He did the cauterization and I showed him behind my ear and in front of my other ear. He confidently said they are lymph nodes. I thought he was a quack. These are not spots you think of as lymph nodes and 3 other doctors told me it was a cyst. I agreed to an MRI.
By the time I got to the MRI appointment, I noticed a quarter size lump right in the middle between my neck and chin. I told the technician and he flagged all 3 areas.
The ENT called me in for the results and wanted a needle biopsy; it was very nice that the specialist who does this was there and had time to do it. She asked my history and I told her I had been diagnosed with Lyme Disease and Babesia and she was sure that was why I had swollen lymph nodes. There is a long history here but Lyme and several co-infections are a focus for many in the health and wellness community but are largely denied to be a problem in main stream medicine. I have labs showing that I have these, but most doctors will not consider them important. Our research suggests there is a link between lyme and lymphoma. And lymphoma can make Babesia (an parasitic infection in the red blood cells) more dangerous.
Again he called me in for the results. My dear friend went with me, not at all because I was worried, but because we wanted an excuse to get together and because, unfortunately, she has way too much experience with bad medical news and she didn't want to take the chance that I would be alone.
He came in, sat down, and told me I have lymphoma. I needed blood work, another biopsy to get more tissue to stage the cancer, a PET scan, and he gave me the name of an oncologist he works with. I am very calm in crisis, but I noticed the feeling of the blood running out of my legs. He left to get referrals and such and we pretty much just stared at each other, trying to let it sink in. She took notes which helped so much over the next few days.
The oncologist he suggested, Dr. Miranda, was on vacation and couldn't see me for 2 weeks. I chose to meet with his another doctor in his office, Dr. Cheng, who also specializes in hematology, which makes sense to me since this is a blood cancer and because of the Lyme and Babesia diagnoses.
Since then I have had the tests, some lymph nodes removed, and have been able to focus on not much besides research.
I have been excited about some places like Cancer Treatment Centers of America (but they don't address lyme disease and babesia). Envita Center in Scottsdale, AZ (but they don't have a lot to back up what they do and they are not MDs - they definitely seem to understand lyme and babesia best, though, and also focus on cancer) The price tag is DAUNTING. Loma Linda has proton therapy but I have no idea if that is best for me. My sister uses a clinic in Mexico that has worked for her and SEVERAL people she knows. I plan to go for a consult, once I have all my labs. I searched Dr. Weil because years ago I led a wellness group based on his health recommendations. That led me to Arizona Advanced Medicine, which I will look into further. They use low level chemo, attached to sugars that cancer gobbles up, to target the cancer and minimize death to healthy cells. A friend I respect swears by CBD/THC as a cure-all (cannabis) and I just did some research, including watching the video, "Run from the Cure," that makes me think, and makes me even more afraid of conventional medicine. I wonder if I will feel more cool tomorrow once I have a medical marijuana licence. (-: My son has been talking about "The Truth about Cancer" for a long time and wants me, (among other things) to get my body more alkaline (I am drinking my lemon water right now). My friend who uses the cannabis and is off medications that were ruining her life, suggested I look at Dr. Gedde in Arizona. Her clinic is even close to our kids/grandkids. She uses cannabis and her credentials are simply amazing. She's a well trained and well published pathologist who left mainstream medicine after realizing it is not there to get people well. I can't wait to hear what she has to say. I NEED someone who understands conventional medicine and science as well as alternative options! I have had 2 people offer me blood transfusions, if necessary. My sister had a dream where our mother told her to tell me to take a lot of Shaklee's Liquil-lea, a liquid multivitamin that helped me overcome a blood disorder as an infant. I'm now taking that before every meal.
The one thing I can't do is shoot in the dark. I need someone who I can trust to help me see what we are dealing with a comprehensive strategy to deal with it. Nothing is off the table right now and I am not a person who likes to swim against the tide (go against experts in their field). So, please pray for clarity and complete confidence in whatever path we chose.
Thanks for caring! Cathie
But, please. I have one request. If you feel like reaching out - do. Don't question yourself. If you are praying, that is what I need most so don't feel like I am wondering if you care if you are not in contact at any particular time. I know how hard it is to know what to say and do at times like this.
Let's make a deal - I will be honest and I won't answer the phone or jump to the email or text unless I want to - at that moment. OK? Let's all give each other a lot of grace. I have said and done the 'wrong' thing in stressful times so many times...let's just give each other lots and lots of grace.
So much for the short summary of medical details (-: Here is a summary of the medical stuff so far.
For the past year or so I have had a hard lump behind my right ear that my MD (Integrative/Functional Medicine), Dermatologist, and her plastic surgeon all said was a cyst that I could leave alone.
I have a history of nose bleeds from one nostril, which I have had cauterized twice before. I missed Christmas Eve this year because I couldn't get one under control. It is always worse in Colorado (which is where I was) because of the dryness.
I wasn't having bad nosebleeds once I got home so I kind of put off making an appointment. But I noticed 2 small hard marble-feeling bumps in front of my left ear. I had a dentist appointment and asked about it. They suggested an ENT. Thankfully I made the appointment, thinking I needed to get the veins in my nose cooked anyhow.
He did the cauterization and I showed him behind my ear and in front of my other ear. He confidently said they are lymph nodes. I thought he was a quack. These are not spots you think of as lymph nodes and 3 other doctors told me it was a cyst. I agreed to an MRI.
By the time I got to the MRI appointment, I noticed a quarter size lump right in the middle between my neck and chin. I told the technician and he flagged all 3 areas.
The ENT called me in for the results and wanted a needle biopsy; it was very nice that the specialist who does this was there and had time to do it. She asked my history and I told her I had been diagnosed with Lyme Disease and Babesia and she was sure that was why I had swollen lymph nodes. There is a long history here but Lyme and several co-infections are a focus for many in the health and wellness community but are largely denied to be a problem in main stream medicine. I have labs showing that I have these, but most doctors will not consider them important. Our research suggests there is a link between lyme and lymphoma. And lymphoma can make Babesia (an parasitic infection in the red blood cells) more dangerous.
Again he called me in for the results. My dear friend went with me, not at all because I was worried, but because we wanted an excuse to get together and because, unfortunately, she has way too much experience with bad medical news and she didn't want to take the chance that I would be alone.
He came in, sat down, and told me I have lymphoma. I needed blood work, another biopsy to get more tissue to stage the cancer, a PET scan, and he gave me the name of an oncologist he works with. I am very calm in crisis, but I noticed the feeling of the blood running out of my legs. He left to get referrals and such and we pretty much just stared at each other, trying to let it sink in. She took notes which helped so much over the next few days.
The oncologist he suggested, Dr. Miranda, was on vacation and couldn't see me for 2 weeks. I chose to meet with his another doctor in his office, Dr. Cheng, who also specializes in hematology, which makes sense to me since this is a blood cancer and because of the Lyme and Babesia diagnoses.
Since then I have had the tests, some lymph nodes removed, and have been able to focus on not much besides research.
I have been excited about some places like Cancer Treatment Centers of America (but they don't address lyme disease and babesia). Envita Center in Scottsdale, AZ (but they don't have a lot to back up what they do and they are not MDs - they definitely seem to understand lyme and babesia best, though, and also focus on cancer) The price tag is DAUNTING. Loma Linda has proton therapy but I have no idea if that is best for me. My sister uses a clinic in Mexico that has worked for her and SEVERAL people she knows. I plan to go for a consult, once I have all my labs. I searched Dr. Weil because years ago I led a wellness group based on his health recommendations. That led me to Arizona Advanced Medicine, which I will look into further. They use low level chemo, attached to sugars that cancer gobbles up, to target the cancer and minimize death to healthy cells. A friend I respect swears by CBD/THC as a cure-all (cannabis) and I just did some research, including watching the video, "Run from the Cure," that makes me think, and makes me even more afraid of conventional medicine. I wonder if I will feel more cool tomorrow once I have a medical marijuana licence. (-: My son has been talking about "The Truth about Cancer" for a long time and wants me, (among other things) to get my body more alkaline (I am drinking my lemon water right now). My friend who uses the cannabis and is off medications that were ruining her life, suggested I look at Dr. Gedde in Arizona. Her clinic is even close to our kids/grandkids. She uses cannabis and her credentials are simply amazing. She's a well trained and well published pathologist who left mainstream medicine after realizing it is not there to get people well. I can't wait to hear what she has to say. I NEED someone who understands conventional medicine and science as well as alternative options! I have had 2 people offer me blood transfusions, if necessary. My sister had a dream where our mother told her to tell me to take a lot of Shaklee's Liquil-lea, a liquid multivitamin that helped me overcome a blood disorder as an infant. I'm now taking that before every meal.
The one thing I can't do is shoot in the dark. I need someone who I can trust to help me see what we are dealing with a comprehensive strategy to deal with it. Nothing is off the table right now and I am not a person who likes to swim against the tide (go against experts in their field). So, please pray for clarity and complete confidence in whatever path we chose.
Thanks for caring! Cathie
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