Just thoughts. No real changes.

Hi There,

It's Saturday morning after a confusing and emotional week. It's so hard to describe where I am at. I am so weird socially. I find it hard to "lie" when I am around people but it is also awkward to try to explain what is really going on in our fast paced and "Hi. How are ya?" world. And, as I write this, I feel stupid because, in reality, I have such a nice life.

I have been told I have this terrible disease. If I listen to the oncologist here and at City of Hope, I'd better be in treatment. There is a closed Facebook group of people with AITL specifically. As I've said before, it is rare and aggressive. The people on that group warn against waiting before jumping into CHOEP chemotherapy and a stem cell transplant. But...as I read their stories, it seems that standard care just starts a future of relapses and new chemo and other drugs. And then death. I'm sorry to be so blatantly dramatic, but that is the reality. I read strings of entries over many months and then...death, or at least the constant fear of relapse, which is most common. Of course there are many people in the process of fighting with hopeful and positive turns in the road. But my observation is that those are temporary. And, I've learned so much about what chemo does to weaken the good and perpetuate the bad - I just don't buy that it is the best option for me. I completely understand when people choose it, however. I was ready just a few weeks ago when my body sent a very strong message not to proceed.

On the other hand, I am living in this weird place. I am supposed to be sick and I am scared to live my life the way I always have - by pushing myself. But I really don't feel sick and, if I weren't spending so much time (and money) and the Cancer Center for Healing, it might be easy to forget I have this thing. I am afraid to do that however, because what we are doing appears to be holding the cancer down and, well - this is hard. It would be very very easy to slip back to my old way of living. The diet of no sugar and processed carbs. Not even much fruit. No pork, vinegar (which is in everything), tomatoes (I crave Italian food), no carbonated beverages (which is hard when I am nauseous because of all the herbs and supplements I am taking in 6 batches a day). I miss the social aspect of relaxing with friends and family over a glass of wine. A lot.

And then the guilt creeps in of feeling sorry for myself when I have come to know and love so many people at the center that are in such bad shape. Some are dying and I can see it - and they know it. It's funny - your own death becomes minuscule in the whole story. It isn't dying that bothers most of us - it's wasting what time we have to live. I sometimes question, are we wasting our time being so focused on trying to live? But at least by doing it this way we are feeling pretty good. There are people at the center that have done, or are doing, chemo and radiation. They are the miserable ones, trying to support their bodies with alternative therapies. Some leave for a surgery here and there - or cryoablation, which is cool, and then return. There are only a few of us that bounce in and out, not feeling sick but knowing we could be joining the sick ones someday.

I have been there so long now (many who come from out of town do 3-5 weeks and then go home to try to find local alternatives or come back later). One man I spoke with at length yesterday said he needed 2 more weeks of "Salicinium Saturation" but couldn't afford it. So he is headed home to make some money as a carpenter, hoping to come back. He is also trying to lead something of a rebellion against the center and it's inefficiency. It has cost him substantial amounts of money and mistakes have been made. The place can drive you crazy. I've decided I am glad it is that way because it forces each of us (or sometimes the caretakers of the very sick) to be engaged and not passive. I am seeing that passivity is contrary to everything I read about remission without standard care.

The visual I have for where I am right now is that this cancer is like one of those Bozo the Clown punching bags we had as kids. You hit it and it seems to fall over easily. So you really aren't fighting. But it pops up, still there. It's not like a fight at all - but it's there and you keep swinging at it. And it keep smiling at you as it pops back up, like it is all some kind of a joke or something. Not the most positive image - but it flashes into my mind.

My gut is telling me I haven't found my answers yet. My sister-in-law in Germany is doing some research for me because Germany is one of the only places you can get a treatment called GcMAF that I have come to believe in. It is banned here and in other countries. Because it works. Period. It doesn't work for every cancer, however. I have learned that different cancers have different drivers. But we don't even check for those drivers here. We just throw surgery, chemo, radiation and maybe emerging immunotherapy at cancer. Blindly and universally. There is another place in Switzerland and wow - the doctor even personally responds to my questions! At the center, I can't get answers at all, especially from the director who is supposed to be my doctor. In person I can't get direct answers and my questions to her communications person have gone unanswered for more than a week now - and they are ones I need answered to make decisions on this "aggressive" cancer!

Another doctor there has taken me under her wing but what she wants to do - I can't find any data on, especially for my situation. And the doctor in Switzerland says he would only use it after checking certain blood levels first. The doctor here says we should just try it over the next couple months because it can't hurt - but it will cost me well over $10,000 and 5 days a week of IV infusion for weeks to try the experiment. I know she is sincere but geez - could we please put this all together!

I keep coming back to "my body will show me." As long as my lymph nodes aren't blowing up and I don't have night sweats, fevers, and rashes, I am resisting the impulse to panic every time I read something that warns me against waiting. I continue looking for answers and can see God's hand leading me, although there are times I take my eyes off that hand and a very strange haze of confusion and fear and sadness can take over for awhile. So, back into prayer and Bible reading to renew my mind - and a concerted effort to guard myself from what I read on the internet. Today I will get to see our youngest son and daughter-in-love. We will go for a hike like so many I know now would love to do but can't. I will try to stay on track with all the pills and the diet and my thoughts. Tonight we will go to a comedy show with friends because "laughter is a great medicine." Tomorrow I am donut lady at church and will go with a precious student to an awards event in the afternoon. It all seems so normal - and will not feel normal for one moment.

The fact that you are reading this and all the prayers (from people of all different belief systems) is making a huge difference and I know it. I am very very thankful for the full, rich life I have in reality. I battle a certain guilt over all the positives I have in my court that I see others don't have. Somehow it will all make sense someday. God knows how this all ends and he has won the war so the battles are for testing and growing. I pray you are well and will have a wonderful weekend!