I never know what to call these kinds of posts....status update? update on life situation, condition, treatment, disease, feelings, mood, family, health?....I don't know....I guess it's all of it.
The truth is that all of this is difficult for me to discuss with or describe to anyone because I increasingly feel that there is a kind of power in turning thoughts into words. I have grown to believe that speaking things can bring them into light and writing things can bring them into material form. Therefore I often find myself silenced. But as much as this is where I am at, I sense that it is not really good for me and not the best way forward. And I care about you and I know that you care about me....and it helps to know what is going on.
Just because I tell you it is hard for me to talk about does not mean that I don't want or appreciate your questions, concerns, or ideas. Also these things going on in my life are overwhelming and scarey and frustrating but I am sure that you have some of that going on in your life too. Everyone does. So please feel to email me or text or call and we can find time to talk. I want to hear from you if you want to chat.
As of today I have been in treatment for this disease for about 45 months. During this time my disease has not remitted or gone away and I have been in treatment the entire time which is common for advanced cancer. In addition to traditional or western medicine, I have used diverse and multiple complimentary treatments and practices to stay well in spite of the rigorous traditional treatments I have received. As part of my treatment, each week I see several different practitioners including integrative docs, nutritionists, chinese med/acupuncture doc, and therapists.
I also teach yoga a few days a week at a local studio and offer private lessons and wellness consulting services to interested people. I continue my training as a yoga teacher and my own studies and am learning Ayurveda (eastern herbalism & nutrition) and traditional western herbalism for my own empowerment but also in hopes of supporting others in their healing journeys. I have been working on developing a small business called Align Botanica that promotes wellness activism and radical self care through workshops and unique hand-crafted all natural products for the body.
Woven between all of that is my children and husband and time with family & friends. Will & I do our best to keep our 2 boys happy and thriving with school, sports, music lessons, and camps. And Will & I try to sneak away for a couple days every few months to try to remember or re-learn who the other person really is.
Since mid March 2017 I have been in an early phase clinical trial testing a combination of 2 experimental drugs and I am not receiving any of the traditional chemo drugs that have previously helped my disease grow more slowly or occasionally stabilize my disease.
The experimental drugs are not chemotherapy that directly kill cancer, instead these drugs try to spur my immune system to rise up and kill the cancer for me. These kinds of new drugs are the only kind that can offer long-term hope for people with advanced cancer. However these new drugs do not always work and they do not often work quickly. Science & medicine is very much still tinkering with these kinds of medicines and do not know the best ways to use these new drugs. The pharmaceutical companies who have invested millions to develop these drugs are keen to get a return on their investment so they have set strict limits on access, timing, method of use, patient eligibility, and whether or not a doctor can prescribe them and what kinds of other treatments a patient can receive while on the experimental drugs.
I have waited since my diagnosis for access to one of these clinical trials. I was finally offered a slot in a trial at my local university hospital so I agreed to do it. However as my disease is not stable or in remission, I knew that I would be taking a risk to stop chemo in order to do the trial. Unfortunately my doctors did not have good advice for me either way, so as it is with most treatment decisions for people with advanced cancer, the decision was left to me and my family.
It has been about 3 months since I last had chemo and 1 month since I started the trial. Sadly my disease is still changing and progressing. It's too early to know if the trial is helping or not and it is looking more likely every week that I will soon need to drop out of the trial to resume traditional chemo and possibly to pursue other treatment options. Even then it is not a guarantee that chemo will slow the disease progression but we are hopeful. And will continue to seek anything that might help and that we can feasibly do.
It's friday afternoon and I just finished teaching a lovely yoga class and picked up the kids from school. It's mild weather so I am going to go forth now and try to have a happy and peaceful weekend. I will save big decisions for sunday evening or monday morning as I need to be present with my beautiful family this weekend.
Hugs to you all,
Sarah
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