Hi! It's been awhile. Time to pivot.

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 standard of care treatment (heavy chemo and a bone marrow transplant if I go into remission). How many times has Dr. Haverkos (the T-Cell Lymphoma guy for all of University of Colorado Health) told me, "You'll be sicker the next time I see you" or "This thing will take off any minute." I know he means well and wants to inform based on his experience, but what terrible messages to give a patient, ignoring all the research about the power of these suggestions. 

I say it all the time and I mean it - the answered prayers of so many and the miracle of my God-made body are why I've done so well. Thoughts of me not doing my part can creep in though. I just have to believe I am doing what I can, that there are psychological and physical benefits to not being focused on the lymphoma and just living my life, and that our all-wise and loving God is at work in all areas of my life, and can be fully trusted. In fact, focusing on the fact that he knows the outcome of all this gives me much peace.

Al-anon meetings and literature help me a lot with "Letting go and letting God" type messages. I started to go because I so badly want healthy relationships with my adult kids and I struggle to have serenity there. I also have needed a way to fully grieve and reconcile complexities with my late mom. I am "qualified" because I have been seriously effected by someone else's drinking, albeit while I was growing up - not currently. I volunteer twice a month to man a regional service center and get together to walk with a friend who is something of a sponsor. I've done 12 step work before and feel it is a great way to live, but I'm having to give myself a lot of grace with doing that really well too. 

Anyhow...why I am feeling prompted at 4:00am to write this:

I have a PET scan scheduled for the day after tomorrow. I'm kind of freaking out because I am not feeling well. I've been here before and have heard it described as "Scan-ziety." And I've been happily surprised again and again with good results when I expected otherwise. Prednisone has been the miracle drug for about 2 years now. I allows me to feel pretty normal and my body reminds me when I forget to take it. Primarily, joints start to hurt and swell by the afternoon. But, I am having a lot of side effects, which I'll list later. I am on facebook with dozens of people dealing with AITL specifically, people with lymphoma in general, and many with cancer in general. I've learned my next steps may be easy or they may not. Many people have trouble with the drug I will be using next, the one I had to "fail" two other treatments to try: Duvilisib, also called Copiktra. I'm scared because of how I felt on the other two targeted drugs that I tried that made me feel so bad. I recognize that I feel somewhat nauseous even thinking about this. I feel physically sick every time I go see my oncologist, which I recognize is because she is in the same offices as I used to get the IVs of these drugs. The first one actually caused a blood pressure drop that triggered something of an emergency the first time I got it. Then I just got more and more nauseous over time with both drugs. The supportive drugs didn't help and freaked me out as it went from a total of 4 to 7 drugs to support taking of the primary drugs. More on that later. I really hate this slippery slope of the cancer treatment world. They just stack drug upon drug, all having their own potential positive and negative effects. It just doesn't feel right.

I have very large lymph nodes still. I feel fatigued in a way that I identify as the lymphoma and I often feel flu-ish. I'm having some night sweats and rashes, although none of that is all that dramatic. I am not experiencing the typical weight loss of lymphoma but have actually exploded in weight in the last year especially - probably because of the Prednisone but also because I completely changed my diet after going to True North. I know - the long term water fasting, education on vegan living you get there, and the careful re-feeding was supposed to put me on the right track. Instead, I came out eating gluten for the first time in years, more carbs, and just enjoying food too much. 

Anyhow, Prednisone now has me dealing with super thin skin that gets bruised, cut, and bleeds too easily. I have heard of two mothers of friends who were on Prednisone who needed surgeries but could not tolerate them because tissues can become too fragile to sew up. I have a ton of heart palpitations all the time. My blood sugar is creeping up and fluctuates a lot. This, of course, is also related to my too-many-carb diet, including wine when want it, and not enough exercise; but it is also probably related to this drug. I have unusual fat deposits in different places, including the beginnings of the hump at the top of my spine you see in older people. I have large lypomas (fat deposits) and bulges where I've never had them before. I'm short of breath a lot but always wonder if that is elevation, being out of shape, or the drug. My blood pressure is also up. I have had tremendous changes to my eye-sight, including ocular migraines, which I have no idea if related to the drug.

I want to have these things well established in my mind because there may be the need to stick to Duvilisib, even if my body doesn't feel perfectly on it. One terrific thing about this drug is that it is taken orally versus via IV. As I mentioned above, going to an infusion center for several hours a day, several days a week as I had to do before had it's drawbacks. Going in for infusions to the chemo center is a huge psychological signal that you are sick, can trigger the body to feel badly (people I know who have gone through so much more than I in this area often describe it as PTSD connected to the hospitals and infusion centers). It really bothers me that, in order to take the one drug that is prescribed, there are so many standard and stacked drugs to prevent issues like allergic reactions, keep port and vascular lines flowing, and nausea. There were times I wondered if I was having trouble with one of these other substances but would never know it because they are just standard. 

Anyhow, this drug is a daily pill so it is much easier to take. I'm not 100% sure yet what the monitoring requirements will be (labwork). The research reads like most cancer research. They are super excited about how some people respond but the large majority get off the drug because of side effects or disease progression. As Dr. Shustov in Seattle said, it is often a much more humane way to treat this disease to give people more time - he started giving it to elderly patients who he didn't want to put through full chemo. But, truthfully, I have some doubts because the other two drugs I've tried didn't work out and they were supposed to be such a snap. On the other hand, some of the symptoms the other drugs helped with have not returned, like the voice changes and troublesome swelling in my tonsils I had before using Belinostat.  

Dubilisib is the way I see right now to get off of the Prednisone. So, after the PET scan Friday and an appointment with Dr. Mellott the oncologist April 12, we plan to start this drug and hope I am one of the lucky ones it works for. There are even a small set of people who go into remission with it. That would feel like a miracle, for sure. I've just left a message with the doctor's office to hopefully get in earlier for the results and to get started on our next steps. I'm working on pairing relaxation with this whole thing so my mind doesn't create problems with these next steps. And I am motivated to turn some bad habits around; I feel like such a hypocrite - telling people Dr. Raleigh and others send me for information about Chris Wark and Kelly Turner's work on wellness and supporting the body to heal cancers. I am not following much of it at all but need to get back to it - my way.

There are a couple people who ask me how I am doing and about this blog periodically. You know who you are and I am especially grateful for your love and support! It's been 5 years since it was my turn to hear those life-exploding words, "You've got cancer." I so want to thank you for caring so much to take time out of your life during these crazy times with so many things vying of your attention. I pray you and yours are doing so well and are even experiencing that peace that surpasses understanding. God is still on the throne and at play, using all things for good - somehow. 

With love and gratitude, Cath