November 13, 2016
Well, tomorrow is my 40th birthday. I will be half my father's age.
And thanks to his genes, I do not look it.
Birthdays come and go, and some people take lots of pride in the event. Bone marrow transplant patients get two birthdays. Some people get a birthday month or a birthday week. However it is celebrated, I hope people are there to appreciate the event.
Part of my birthday has always been meeting with my parents and taking advantage of birthday freebies. I highly recommend joining e-mail lists for places you go often. Tomorrow, I will go shopping, visit with friends, and make one of my friends buy me lunch.
I will also celebrate this year with multiple blood draws over two days. That is how a clinical trial works. Constant maintenance of how my body is responding to the developing medication. As a friend often says, so is life.
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News:
I began a clinical trial in September. My symptoms at that time included pain and stress associated with extreme swelling and lymphedema on my left side. My tumors had multiplied and increased in size. I had gained 30 pounds or more in heavy fluid. This lymph fluid is not like blood or light swelling. This is thick fluid that was filling my extremity. My body could not process the fluid because of tumors in my lymph system.
The clinical trial medication is a pill that I still take once a day. Over the next 3 weeks, I lost 30 pounds of fluid. This is a significant result for me, and for the clinical trial. My side effects included fatigue and nausea, which were not fun. However, there was no infusion in my chest, and I did not lose my hair.
As the next month progressed, my pain levels subsided. I was no longer taking high doses of morphine and Norco. The swelling was visibly resolving. I could move better and sleep better.
My doctor supports a comfortable active lifestyle. No matter how good I feel, I must be reminded that the time I have to be off of work is to observe the results of the clinical trial medication. Yes, it worked for me immediately. My tumor load went down by one third. That is big. But, it is important to wait and watch, if the medication starts to plateau or lose momentum. Should the side effects be worse, or should the results change, then I would have to begin another type of chemotherapy.
So, during this time, I monitor side effects like nausea and pain, but also have very low white blood cell counts. I have to be aware of my environment but more aware of what goes into my body. I am adjusting to different food cravings, and eating less. Not to mention no alcohol for awhile. Low white blood cells mean I can be at greater risk for infections, some of which I have already dealt with. Flu like symptoms are much more difficult when your body is weak from treatment or cancer itself. I already experienced two rough weeks of being more sick than usual. I now have a longer recovery process. That's a change from before.
So, just like two years ago, I am building strength through exercise and activity. I continue to research my treatment options. I play softball and exercise often to build strength in large muscles. This will then increase my ability to make white blood cells, and remain strong in the fight. I am trying to have a better diet plan, as opposed to just not eating at all.
A friend recently reminded me, "Don't judge a book by its cover."
I do not look like I have cancer. But I did for awhile two years ago, when I lost my hair. And when I was dealing with symptoms over the past year.
I do whatever is good for my soul, and that is what I want people to see. Maybe its travel or playing softball, or going out with friends.
I cannot stress how important perspective is for those in treatment and their caregivers. The patient is the only one who can decide how to live life with cancer. You can hide in a closet and let stress fuel the disease. Or be overemotional and exhausted, which may be unusual for someone who was once independent and logical. Or deny the whole experience, and stubbornly ignore what could save your life or the lives of loved ones. Maybe meeting someone who sees the disease differently will allow the patient to face the cancer in a better, healthier way.
My perspective is based on heredity, life experience, and education. In an oddly morbid way, I was fortunate to be diagnosed metastatic. I never have to worry about my cancer coming back. I will always have active disease. So I am prepared for that. But I am not contagious, and some people will never know that this is what I deal with. And everyone deals with something that no one will ever know about.
Also, with the support of others , I realize I am not alone. I try to share my perspective, through this blog, not because I am a positive person, but because I see it work. I see the world differently because of my cancer. I make it through every day because of the science and the support of others. I will keep going, until I cannot. Maybe just a bit slower than before.
Thank you for reading and checking in. I appreciate feedback and will answer questions, or speak with anyone who needs support.
Love, Sosa
