When the rubber meets the road

I woke yesterday morning with no anxiety and even a lightness in my step I haven't felt lately. The day before, out of desperation, I took my Bible outside and bundled up in the sun, only to find myself actually meditating and praying for a very long time. It started as I fell into Psalm 40, which a person shared as "her psalm" many years ago when I was working through a 12-step program for codependency.     I waited patiently for the Lord; And He inclined to me, And heard my cry.  He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock,  And established my steps.  He has put a new song in my mouth -- Praise to our God; Many will see it and fear,  And will trust in the Lord. It was strange to have absolutely no urge to open my eyes or move to some other activity. I watched my thoughts come and go, focused on my breath some, and did some Ho'oponopono - style prayers, which have helped me greatly lately and in the p...

Hi!  It's been a long time since I posted. This is a reflection of how I've been dealing with the whole lymphoma thing. In many ways, because of Prednisone and the unusual stability of disease I've experienced, I've been able to live like I don't have anything going on. I essentially eat and drink what I want, live a normal life without the constant taking of hand fulls of herbs and supplements, time-consuming juicing, enemas, saunas, IVs, etc... I'm desperately trying to get more exercise because I can feel my body weakening when I exert myself, but it has been a challenge. To be honest, and I've tried really hard to be honest in this blog, I'm not feeling well these days and, while I'm trying to be kind and gentle with myself, I'm often mad at myself over it all and wonder what the heck I'm doing.  I know I have been blessed with stability of this disease when the doctors warned me from the beginning that we should not wait to jump into sta...

It's been a tough few weeks. Andy and I both contracted Covid, probably the Delta Variant. As a T-Cell Lymphoma patient, I investigated mRNA treatments early on and the best specialist I could find told me to steer away, having something to do with the mutations I have of CD4 and CD53, related to the cancer. Again, I have the 'benefit' of personalized information, I suppose. Now I'l have natural immunity, at least to this variant. Funny how the science is showing that it lasts at least several months but we can't use it to gain access to the world like record of vaccination, which is showing only spotty immunity and now boosters are needed.  So...as I've consulted with my current oncologist, the DO who has helped me so much, and others, I have hesitated to take the vaccines. I also have a young man I know who got the cardiomyopathy, a person at work who possibly lost her husband to a reaction from the vaccine, and a dear woman whose heart was fine (allowing her ...

It is so confusing sometimes - to me, and I know to others. What the heck is going on?  I am not in remission but the Lymphoma does not appear to be killing me. The standard model is that if you have cancer, you need to cut it out, burn it with radiation, kill it with chemo, or use an immunotherapy (that is not as innocuous as people tend to think). But, what if it is there but it isn't killing you?  I'll admit, it takes a lot of faith to not really know. You have a scan or bloodwork or whatever, but it could "ignite" the day after and you'd be in trouble, right?  As I've shared here, I know I have been fortunate. I have met people and am in contact with many who were so sick right away that they didn't have choices. On the other hand, I am also in contact with people who were like me...diagnosed with swollen lymph nodes and biopsies, symptoms that are bothersome like night sweats and swollen hands, feet, joints... I've had some rashes. They are jumped...

 Hi!  After a set of 3 weekly IVs and then a set of 2 after a week off, I have decided I have to stop the Romedepsin. My oncologist is amenable to just about anything I want but I could see yesterday that she was hesitant because ... well, it's working. The swelling in my tonsils and lymph nodes in my neck are noticeably smaller. I am down to about 8mg of Prednisone with no swelling or pain in my joints. But...I just feel lousy all the time and I just can't deal with it anymore.  It's similar to being pregnant when you feel generally unwell, suddenly need to lay down often, and feel better while eating whatever you feel like - only to feel bad again a few minutes later. My muscles feel weak and jittery inside. Lousy. The oncologist is insisting on a new PET scan to document where I am at, "In case we need to know how Romedepsin worked for you in the future - if you need it." I will wait to see if I need to start the Duvilisib, the oral pill suggested for me by Dr....

I made an appointment with my oncologist after reaching out to her about how bad I have been feeling. She started out by giving me a copy of a study she had found on the drug we want to try next, if needed. I've talked about it before, it's called Duvilisib or Copektra and Dr. Shustov in Seattle told me about it last summer when I consulted with him. He claims to be getting about 70% remission with his elderly patients who he doesn't want to put through Chemo and the Bone Marrow Transplant. That is pretty remarkable-almost unbelievable.  Anyhow, because it is not approved for my kind of lymphoma, we have to jump through these hoops of trying at least 2 other "failed" treatments. I did an IV today and have 1 - 2 more planned, each a week a part. Then we plan to stop it. It has worked in that I am reducing the Prednisone gradually without swelling, my tonsils are down to normal, and lymph nodes are smaller. But....I'm not tolerating it well with lasting feelings...

The drugs mount and my discomfort with that does too. Dr. Mellott has added an IV for nausea and will add an additional one this Friday. I am on 3 different oral drugs as needed to try to make me feel better. But...they really don't. I continue to try things that sound good - carbonated water, different foods...anything that sounds like it will calm my stomach and take away the malaise. Nothing really works.  I met with her this week. We need to do 2 rounds of 3 IVs before we can determine if I can tolerate the drug and to see what we think about it working. My throat is better - Andy told me I am sleeping a lot quieter now. Some rashes I had seem better. I think the "Frankenstein" lymph nodes on the side of my neck are a little smaller. My leg and foot that get a very itchy red rash are completely clear.  And so...it is a mental game of staying positive when I can't accomplish much. I used to be an accomplishment junkie. I am much better now about that but the questi...