Burning Man

Okay this is pretty wild…

Looks like I am going to go to Burning Man this year after all.

I feel as strong as I ever have right now. And I suspect that at the beginning of September I will still feel this way or better being that much further removed from the chemotherapy treatments.

I also found out that I will be taking ATRA for 15 days every three months. Thus I will be “light sensitive” only in those months. The way it falls out, I will not be light sensitive during Burning Man.

Believe me I will be extra cautious and limit my sun exposure time as much as possible. If things do not seem right, I will get out of there ASAP.

So, I got an extra ticket. Any friends of mine daring enough to go along???


Today I had an appointment with my Oncologist/Hematologist. I knew she was going to be putting me back on ATRA. But I did not know we would be starting the continuation round of the chemotherapy (my chemotherapy drug is Idarubicin). Well I checked out healthy (well enough for chemo) so we started it today. The next three days will be the rest of the continuation round.

I have been talking to my body and this time we are only going to kill off the leukemic cells. I am going to remain an outpatient. Meaning, no infections, no fever and no need for blood transfusions. Needless to say, I need all the help I can get. So I ask again. If you are the praying kind or the karma good thought kind, I will take your support. Why? Because I am selfish. I am young, I have a life to live, I have a young daughter to raise. I want 100% remission. I thank you for any prayers or kind thoughts.

A couple of weeks ago, my mother-in-law said “leukemia or any cancer for that matter is not for sissies”. I would extend that to any major disease (cancer, MS, lupus, heart disease, etc.) In all my hospital stays and doctors visits I have seen other patients fighting. In my book, anyone at any age, actively fighting a major disease is strong. Whether or not they survive is immaterial, they are still strong. You have to be strong mentally, physically and spiritually to fight a major disease. The day I went through my last bone marrow aspirate without morphine or sedation and then went and did physical therapy 15 minutes later, I gave myself the title “Bad MF” for the day (if you do not know what MF stands for, don?t worry about it.) I figure anyone that can do that, is strong, very strong. I am not boasting, on days like that, I surprise myself. I credit my God and my faith in God. I credit your prayers and kind words and thoughts. Again thank you.

Today I was introduced to a new site, Planet Cancer. It was started by a cancer patient that felt most cancer information is directed at pediatric and geriatric patients. This site is for the rest of us. It?s honest, dark and humorous, sometimes all at the same time. Seriously, in fighting cancer, there are so many battles, the treatment is a long journey (heck I am only in day 39, two years lie ahead of me), you have got to have some levity about the situation to get through it all.

Some Days Are Just Not That Easy

I woke up this morning to lab services taking my blood at 6:00 AM. That is pretty normal. But this morning they had to stick me three times to get it right. It happens I guess after you have been stuck 900 times in the past seven days. So I got up to put in my contacts and wash-up, and I noticed in the mirror my face is wider. What the? Oh yeah. Steroids. I am taking steroids to counter the effects of the ATRA. Yuck. So with this happy thought I stumble back to bed. Why do I stumble? I have swollen ankles from all the fluids off the IV drips. Meh.

So I talk to my doctors as I do most mornings. Found out I was wrong about the first chemotherapy round. It is actually four doses over eight days. So for this round, we are finished on Monday. Then the fight is on! Out with the mutated cell production in with the new! Then three more rounds of chemotherapy later on. Long road ahead. As for the steroid changes, those should not be permanent. They gave me a diaretic today to start peeing off the fluid retention. So all gets better or right eventually.

Good visit from Sarah today. She has been here for both chemotherapy sessions. It puts my mind at ease. It would be easy to get a little freaked when you know something that strong, that toxic is being dumped in your body.