Tuesday, November 4, 2014

I'm still in myeloma remission! Having no fear


I'm buckling up and driving forward. Let's do it!


I used to hate birthdays, like detest them. I used to tell everyone that I was 38 years old, year after year. That's because 38 was my favorite year. It was before I married Rob and my life took a dramatic downturn. But no more. Since getting myeloma, each year, each day, is a gift. And this being my birthday week, things have started out with a BIG HUGE BANG.

I never tell the world when it's time for me to get restaged for myeloma because I'm afraid to jinx myself and it was One Big Reminder that I am battling CANCER. Most days, I can pretend I'm just normal and fine, but not when it's RESTAGING TIME AND I HATE IT. But since the results and it's all over, I can report and share.

Two weeks ago, I started all those awful tests, which culminated in my bone marrow biopsy last week. I hate biopsies. They are painful and I go without any kinds of medications or sedatives for that test. I get on a table while my PA, Mary, drills a hole into my back, sticks a long needle into my bone marrow, and extracts a piece of bone and marrow blood. Holy hell, it is not fun. It hurts like a BITCH The only thing that made a difference this time was that I started sharing with the three women in the room my experience with a Brazilian wax. And, truth be told, the pain of a bone marrow biopsy is nothing in comparison to when my privates are being waxed and stripped of hair. Except one has everything to do with vanity and the other with cancer. Anyway, I survived the biopsy and even laughed at parts of it. I'm still sore in the area where that needle was shoved into bone but, whatever, pain is pain and I grin and press forward.

Today, I had my twice per year visit with my oncologist to get my results of all those tests. I wasn't nervous at all until I was seated in that room with my mom and dad and awaiting my oncologist, Dr A to enter the room. Then I wanted to puke. But he arrived, told me that I remained in stringent complete remission. Whoooohooooo!!!!!!! After that, nothing else mattered. Not the fact that I am off of the pill Xarelto for blood thinner and back on injections in my stomach each night. Not anything. He also said something even more beautiful: "Don't be afraid. There are so many medications and treatments for you, and so many exciting things happening with myeloma. You will be fine." I wanted to kiss him. And then, together, we decided that I will remain on my maintenance therapy as is. That means weekly infusions of Velcade and the wicked Dex pills that make me hyper one day per week, and a monster for two days a week, and have the fatigue and crash one to two days per week. My weekly pill of Thalidomide, which costs out of pocket, some $2,300 per month as a co-pay after insurance pays their $5,000 piece of it. But the great news there is that I got a grant to cover 100% of my co-pay. That's right, I pay $0. Thank goodness. But who cares? I am 80-90% of my former self but I have managed to craft a purposeful life in that space. I will survive, thrive, and kick ass. I will always have profound respect, fear, and amazement at cancer's horrific, evil power. That said, I will overcome. I will beat it and spit on it when I'm done.

So today I am happy, excited, grateful. In that room with my doctor, I wanted to fall to my knees and thank God for answering my endless prayers. While this journey has been frightening, without it, I just may be back in San Diego working like a dog and trying to survive living with a monster (my husband) and wondering how I could ever escape that horror. Today, I will just be grateful.

Hope, peace, prayer, birthdays, life, purpose and meaning. Hmmm.... not bad for an almost 47 year old.