Attempting high dose Prednisone to get these lymph nodes off my wind pipe.

Yesterday was oncology day; the possibly pivotal day when she looked at Friday's PET scan and we decide what to do next. I suspect things are worse; I have a troubling sensation that lymph nodes are pushing on my windpipe. The sensation is worse sometimes that others. Sometimes I can still just go about my life as I have for so long. Other times it deeply rattles me. 

My dermatologist of 4 years has pleaded with me to go to MD Anderson where she took her son who has now beaten Hodgkins Lymphoma. I met her when he was first diagnosed 4 years ago. We cried together and I gave her the Chris Beat Cancer and Radical Remission info. He apparently really took to the integrative info as they also sought out what they thought was the best conventional treatment. 3 years ago we cried together as she told me he was really in trouble because all the horrible chemo had not been working. 2 years ago, she told me they were trying Keytruda as a "Hail Mary." And when I met with her a few months ago, she joyfully told me it worked and he now had a full year of remission under his belt which, in his case, probably means he's out of the woods, for now. She told me she wished he hadn't had so much treatment that very well could cause him lifetime health issues, including secondary cancers. She wished they could have started with Keytruda. She gave me a short story he wrote in school about facing death as a college kids. She warned me to have a tissue with me and she was right. He is now in medical school and actually wants to study t-cell lymphomas, which is what I deal with. She told me the researchers are very focused on this type now, versus b-cell lymphomas, which was the focus for many years with fantastic results. 

In essence, I have had the benefit of "targeted drugs" like Keytruda in an attempt to go less toxic and/or to buy me time until new breakthroughs could happen. They have helped me with symptoms, but I have had trouble tolerating them. I find myself questioning, "If I haven't been able to tolerate these, what would it look like if I jumped into CHOEP and possible bone marrow transplant as I am still advised?" 

My oncologist is great - she's very human and often says that I've proven them wrong and she'll support me in what I want to do. I know she knows I trust and listen to her. She said the other day that she knows "chemo would help me." She also agrees with me when I tell her that I feel it could also alter my basic health, which has kept me pretty stable to date. 

Now she reminds me that it could be becoming life threatening. She and other doctors have warned me that things could "take off" very quickly. 

So I contacted MD Anderson to start their process and...ugh! I feel overwhelmed with the info they want. They need my pathology "blocks" or slides. Those are nearly 7 years old at Mission Viejo Hospital (I think)  and probably 4 years old. The last set were sent to Yale from Long Beach Memorial when I considered going there. They want all sorts of records. The review will cost anything from $250 and $3000, the cost of which I won't know until they see them, and we don't know if insurance will help. As I've said before, I am just so burned out of throwing money at this. Also, I have learned how much lymphomas morph; it seems to me there will need all new biopsies anyhow. 

I have a new person in my life who has dealt with breast cancer and she implements all the Chris Beat Cancer info. She's strict vegan, limits alcohol, and exercises. Heck, she's probably 10 years older than me and she just climbed her first 14er. That is a mountain in Colorado that is more than 14,000 feet high! I'm not sure what supplements and stuff she takes. It's like having a mirror held up to my face when we are together and I feel a bit judged when she sees me enjoying the likes of a fried fish taco and a glass of wine. 

I have looked at my behavior this past few years and find myself wondering if I think I can beat this by my own effort. My mantra is "I am perfectly safe." My new friend said the other day, "Yes, we are safe. But I don't want to feel like a victim." She was explaining why she has taken such steps to change her diet and do what she can to impact her health. 

I know my approach from the beginning has been to "throw spaghetti at the wall" and see what sticks. I have no idea what has stuck, really. I have found being counter-cultural with diet to be very very hard. I still do a lot in many people's eyes - Low Dose Naltrexone and about 1/2 of the Fenben/Tudco/Serrapeptase protocol. I just got more Ivermectin and Sustained Release Metformin to try again. Several supplements. I meet with my Spiritual Director every other month now as that is the schedule she can handle. My DO in California wants be back on Lomatium and to be coming in for high dose Vitamin C. She also recommended the book, Outside the Box Cancer Therapies, by Paul Anderson. He's the doctor she wanted me to be able to go to so badly several years ago, but he had stopped taking patients. 

I find myself thinking about forgiveness, and it's importance in the process of healing. It's interesting that so many of the more "alternative" thinkers I've met on this journey will tell me that the left side of the body relates to our mother-relationship. Since my right side is considerably better, as evidenced by the PET scan, does that mean I've resolved issues with my father figures???? I now actually know who my bio-dad was and, thankfully, he was a good (yet fertile) guy who didn't apparently believe in condoms. I've made some peace about the father on my birth certificate. I guess that makes him my legal father. I never had much respect for him and, upon meeting him a few times as an adult, didn't feel I wanted a relationship with him, at least not on this side of heaven. I believe, however, that he and his wife prayed for me and my siblings all those years and have to think that made a significant difference in our lives. My step-day that I knew and loved and emotionally clung to, only to have him deeply hurt my mom with infidelity and fathering a child with a young woman while they were married. Later he essentially disowned me after I lived with him because I hadn't clean the house enough as a 14 year old girl or so that is how I understand it. Then he died of cancer.

My mom, on the other hand, is a complex mix of emotion for me. She could be so great. I often apologize to her in a prayer as I realize she was alone for the last 45 years of her life and I realize now, as a mother of all adult children and a grandmother, how lonely she must have been. We were all good to her, but none of us could have understood her life. She could also be very tough to deal with and I always thought there was something wrong with me in that I couldn't relax into a close relationship with her. Just before she died, we found out she had very intentionally kept from us some very big secrets, that affected us. And, the worst part for me is that she exacerbated dynamics in the family that hurt my siblings and set me up to feel like being who I am hurt people I love. She couldn't be transparent or honest about many things and she couldn't see her part in making some people feel more valued or cherished than others. It caused a ton of pain. 

So....does this have anything to do with my very mysterious and lopsided PET scan this time? I really don't know. 

The oncologist suggested we try a 5 day very high dose of Prednisone to see if the now-visible and palpable lymph nodes on the left side of my neck will shrink, diminishing the sensation on my wind pipe.

I started the 100mg today, a little nervous about the possible changes in anxiety, stress, anger, hunger, and insomnia, which I've already been dealing with. And, here I am without being able to settle down to sleep and it is 3:17am. 

I sent a message through the medical portal to my doctor to see if I slowly taper off of this drug, like I've done when I took 60mg a couple times. I generally take 10mg daily as something of a miracle drug that helps me so much with painful and swollen joints and such. I've gained a ton of weight on it and bruise very easily, the way you see older people do with the bleeding just under the very thin skin. But, in general, it's easy for me to take. 

We shall see. I feel like I've probably got another few months to see what happens and go from there, just as I have since the beginning of this adventure? somewhat of a nightmare? journey? I don't really know what to call it. 

For now, I wonder if I believe I can beat it and I also wonder what that means.  In the past I've had to look at if I want to beat it. There are many things I dread dealing with in this world. There are also people I know would hurt terribly if I died. I fear the process of death yet deeply believe that, when the time comes, I will actually be ecstatic and relieved once I get to see what's on the other side. I want to have the courage, insight, and wisdom to really be there for the people God has given me and am actively seeking how to do that in this stage in life. But, it is a "slow and mysterious process," to be sure. I know how important belief is in this process. Every time a person in my cancer-related Fb groups dies or has a poor scan, I find it hard to believe I might beat this "incurable lymphoma with a dismal prognosis." 

It's time to turn it all over to God, once again and again and again. I am perfectly safe. And, maybe. Just maybe, my best today is enough, even if it can look like self sabotage. I really don't know. And that is the truth.