Learning Lots About Myself

 Hello Dear Friends, 

It's been more than a month since my last post. It's been a good time but I find my heart often troubled. Health wise - I feel confused. I am taking Prednisone all the time now or my symptoms come roaring back. When I take it, I only have the congestion in my head where I constantly feel like I have a sinus infection, my tonsils and adenoids are very swollen, and I am always frustrated that I feel like I need to blow my nose but it is futile and even painful. On the other hand, I am able to ignore the idea of T-Cell Lymphoma because my joints and hands are normal - I am even wearing rings again. I can feel fatigued and have some brain fog, but I blame that on a pretty lax diet - although we really don't eat any meat and don't miss it at all. 

The doctors are concerned about Prednisone. They want me on antibiotics and antivirals when I take it because of the possibility of infections, especially lung infections. I have skirted this issue...knowing the health impacts of these drugs and feeling like every medical intervention stresses the body. I swear - every time I go see them they want to prescribe another medication. I need to stay in contact for the Prednisone and for when (if) we need to proceed with treatment, but they are frustrated because I don't jump on their bandwagon. On the other hand, they've never seen anyone deal with cancer this way so they are kind of curious and more respectful than they were earlier in this journey. (There is still a clinical trial on the table, Romedpsin by itself via IV, and Duvilisib as a pill but insurance probably won't pay for it.)

I am in 2 facebook groups for people dealing with T-Cell Lymphoma and AITL specifically. I often think I should stop following them and sometimes I chime in but I am careful because most of them were diagnosed and put into very cytotoxic treatment right away. They are usually asking questions about how to deal with side effects or what to expect from a particular treatment. Many are headed toward the stem cell transplant if they go into remission. A great majority have relapsed and are now trying "salvage chemo" protocols. Some jump on to report they have been in remission for years, which is always great to hear. Sometimes family members come on to tell us someone has died from the disease - I often wonder if they have died from the treatment. I am careful about what I say. I don't really know ANYTHING. But I can't help but share when someone asks, that some doctors are more open to trying less toxic treatments first and that I'm 3.5 years in without jumping into the Standard of Care and that I'm doing pretty good. The last thing I want to do is make anyone doubt what they are doing or have done, however. It's a dance, for sure. Sometimes the posts play with my mind and scare the heck out of me. 

Today I realized something big: I believe the prognosis. The reason I realize this is that I am retiring from work Dec. 31 and I have decisions to make on retirement investment accounts. I realize I have been frozen on my decisions because...I am battling between planning long term or short term. Should I plan short term because I won't be here much longer, as the doctors have told me? Or should I plan long term, believing God is healing me? I can hear people who want to flat out correct me here. I'm being honest when I share that, because of concrete decisions I need to make, I am realizing that I have been doubting all along. And I am repenting my lack of faith. 

Oh Lord my God, I cried to you for help, and you have healed me. Psalm 30:2

Something I have hated about myself all my life is my inability to follow through on what I believe. I teach the power of changing your thinking in the life/academic skills classes I teach. Every semester I am reminded of the power of how we think - and that we can decide to change our lives by deciding what we think about. "You move toward what you think about." (Lou Tice, among others). What do I think about the most? It's not always what I want to move toward. The voices of doctors really do ring in my head. The things I have read about the "dismal prognosis" is often much more prominent than "By his stripes, I am healed." Boy oh boy oh boy. I think I've got a choice to make and some work to do. 

Which brings me back to what I'm learning and relearning this last few days. I realize that I am putting my faith in doctors, what I hear and see (on facebook and online as I have researched this diagnosis), medications, retirement accounts and pensions, my ability to figure out and handle whatever comes, blah blah blah. 

I have glimpses of faith in the One Who Made Me and Who Is For Me; books I read, sermons, podcasts, small groups, Bible reading all help tremendously. But...the real me is still waiting for the big shoe to drop - a boot really. I'm watching for it, stealing myself for it. I waiting to be taken down like vulnerable prey. What kind of faith is that? What lies have I believing? 

And then there is the nagging knowledge that I have benefitted in many ways from this health crisis. My sons all got married just before I was diagnosed. I always wondered how I'd handle them growing up and away - building their own lives separate from me. They have been my focus since I was a child. They are why I chose my boyfriends, husband, career...I am fully aware and have talked with God many times about how they could actually be my god. 

And then...it's time to let them go. I always wondered how I'd do. 

But then, I got this bombshell of a diagnosis and prognosis that gave some urgency to our relationships and our time together. In many ways I was spared the full brunt of their separation as young people who need to be very focused on their own lives. 

I was also instantly released from my compulsion to over schedule and over commit to the point of exhaustion and panic - at work and church especially. These have been huge benefits; I gave myself permission to put down many many burdens that I never thought I could put down before. I had an acceptable "excuse" for the first time in my life. 

I also inherited a business in 2015 that has benefitted us financially. We have never had expendable income before; we were always just making it. I was terrified my siblings or others would resent me for what we've received. And I've always prided myself on being so self sufficient since a very young girl - paying for everything like college myself...it has stung when people now attribute what I have to "luck" when so much of my identity was wrapped up in my own ultra-independent struggle. 

The benefit of the illness has been that I've been able to justify this financial blessing because I've needed it to pay for so much of the alternative treatments I've tried, especially that first couple years after being diagnosed. It's like I've been able to justify being blessed and I needed that. 

(As I've written before, I have come to believe these expensive clinics are not necessary (at least for me) and I absolutely hate the greed I have seen in the alternative cancer treatment world! I am repelled and repulsed by it. I have no idea if any of it works or not, but I certainly don't believe in going to the expensive clinics and spending months or years in IV chairs. If you can go to learn new life skills that can be done at home, that is one thing. But I, like so many others, go - hoping that some extreme treatments will do the trick and then we can leave cancer behind. It just doesn't happen that way. At least I've never seen it.)

So...what do I do with these realizations? Well, recognition is the first step, I suppose. Why do I need this illness to make me feel like I am important to my kids and that I am worthy of financial blessings? Do I need an excuse to live a peaceful, balanced life or is it OK to enjoy what I have and still be "blessed to be a blessing?" Does God really say that I have to be completely selfless to serve him or can I live out the life he is giving ME, trusting that he is a personal God and is working through my circumstances, just as they are - not as I or others think they should be?

I prayed early on that God would heal me - only when I've finally learned what I need to learn through it all. 

Maybe it's time? 

Regardless, I am trusting you, God. Your will. Your timing. Your perfect plan. 

Oh Lord my God, I cried to you for help and you have healed me. Psalm 30:20