act two

Saturday, September 27, 2008

had my first blood draw in L.A. yesterday. it was on the UCLA campus.
so here's the thing. since I'm in between full-time insurance companies, my plan is to have the blood draw in L.A. with the results to be faxed to my oncologist in Tucson.
I don't want to get an oncologist under Cobra then have to do it all over again once my new health-care coverage kicks. too much run around.
so we'll see if this interim plan works.

first blood test in California

Friday, September 26, 2008

Moving less than one year after completing chemotherapy is bound to be complicated and expensive.
Back in Tucson, I certainly had a routine that was well worn: every two months, go to the same clinic off Alvernon. check in. read whatever I brought with me. hear my name announced in the waiting room. small talk with nurses. prick of a needle. blue bandage for the wound and head to work. a week later, Check in with Dr. Ahmann and the clinic staff on Campbell.
Every four months, go to the new lab on campbell, across from the trader joes. arrive 45 minutes early. check in. drink that terrible filth they call contrast. disrobe in one room, put on the medical robes. ride the giant donut. feel the warmth of the iodine flush in my veins. blue bandage again. brush teeth to get rid of that taste and head to work.
a few weeks later, I'd get the typical bills -- depending on the cost, I could handle them, though thanks to some sage advice from a Lee Enterprises employee, i ended up having to pay more than i should of for CT scans.
that's another story: don't believe the H.R. people. like the insurance companies, all they care about is saving money.
but I'm in Los Angeles now. there are a ton of great resources here. and they are spread out all over this metropolis; from West L.A. to Loma Linda.
But before i can access those resources, i need to pay for insurance.
I'm in between companies. Not yet eligible for benefits as a Daily News employee, so i'm covered by cobra under Lee enterprises.
cobra should be called mosquito, 'cause it's a blood sucker.
In three months, I've paid cobra more than $1,200 - about $400 a month.
three weeks ago, I meant to get my first blood draw. but i work at a newspaper and sometimes you just can't plan your day. between the chatsworth crash and a project I've been assigned to, well, three weeks slipped by. like I was saying, three weeks ago, I got all my paperwork ready and decided I'd get my blood drawn at a UCLA clinic in Westwood.
three weeks ago.
the project is in its final throes and I'm finally taking a morning off from work to get my test taken care of.

a friend is diagnosed

Wednesday, September 17, 2008

so it has been nearly one month since the last post. so much has happened.

i've been back in Los Angeles for more than two months now, working for the Los Angeles Daily News. It has been more than one year since I began chemotherapy. More than one year that Guadalupe and i have dated. Little Harley Rose Leonida is more than a year old now.

Elsewhere, changes abound. there's a female candidate for vice president and a black candidate to be president of the united states. Indymac doesn't exist. more folks have been laid off at the L.A. Times. Bolivia is on the verge of a civil war, again. the achievement played their last show in Riverside. Francisco is on tour with the Santa Cruz River Band. Manny Santana passed away. nearly all my Santa Cruz people have moved on... and on and on.

It hasn't been for lack of material that I haven't written. in fact, there's a plenty that I, as a cancer survivor, should be chronicling. The less glamorous stuff -- like switching insurance, paying more than $400 a month for cobra coverage to cover a blood test I have yet to take, and new life. yes. the feelings within.

I have to admit something.

I haven't told my co-workers that I'm a survivor. It hasn't come up. how could it. But when I arrived to Los Angeles, I was anxious to stop always talking about cancer.

Back in Tucson, there were memories everywhere. Co-workers and friends always asked. I was cool with it, but in some ways it had become a very focal part of my identity. it will always be, but I want some space. i know it will come up again. shoot, I showed a co-worker a photo of me bald. and at a union training this weekend, I know folks will ask.

this want of space all started with the final story for the Star, my farewell, cancer experience piece.

Actually, the moment it all changed was captured on video. You can see my face change.

in the name of journalism, i returned to he clinic and discussed my experience. at one point I climbed into the chair that i started chemotherapy in. I start explaining the experience. then I stumble. repeat the same thing about three times. and start crying.

I went home that night exhausted. the story and experience brought up much that i hadn't allowed myself to feel or reflect upon.

not long after that experience, I made a joke about my cancer. something about one nut or whatever. Guadalupe finally told me it was hard for her to keep hearing crack jokes about my cancer.

i never realized it would upset her. then I thought about my mom, what it was like for her to hear my joke about it., I really should've been writing all this earlier. it's a lot to process. i've much to catch up on.

anyway, so the point of today's title: a friend, a pretty young lady from Tucson has been diagnosed with cancer. Not quite sure what yet, but I'll call her tomorrow.

we'll talk one survivor to another.

Living and Dying are intimate friends...

Friday, September 5, 2008

The words in my title were written by John Denver. I was driving my car and listening to John Denver's music. I was focusing on his lyrics and even though I had heard the song before, this was the first time I heard, "Living and Dying are intimate friends". I felt tears streaming down my face and I realized I needed to pull off the road.

Living,dying....two words that I just never saw as friends but for the first time I felt some comfort. With my newest cancer diagnosis I felt that it was important that I feel positive about the prognosis. However, fear entered my emotions, body and spirit and I could not soothe myself or feel calm. The doctor had said that right now there would be no treatment and that he would see me in a year if nothing changed. My heart ached as I heard his words...I just knew too much about Adenoid Cystic Carcinoma (ACC), the orphan cancer. It is rare and because of this, it is not studied much. There is no cure just treatments ...chemotherapy. I would only have chemo if symptoms existed. Right now, I am symptom free!

Living and dying are intimate friends...these words circled round my mind and body. What did John Denver mean when he described these words as intimate friends? Did he ever imagine for a moment how they would touch me? I knew for the first time that if I looked at my birth, my life and my death as three intimate friends... I would not be afraid.

When I was born, I was just born. I didn't worry about the nine months I spent in my mother's womb or the birth process or would I be a boy or a girl. As I have been living my life, I have spent a great deal of time concerning myself with the wrong things and missing out on so much time! There have been times when I have been anxious and afraid to do something or face a problem. Other times I worried about what might happen if...

With time, experience and training, I have gotten use to the bumps of life. I plan on continuing work on my life and my use of each day. I will also continue seeking peace and living a life where I do things that make an impact on the world.

Recently I have seen the presence of death and its color is neither somber nor black. I am reaching out for dying in terms of attempting to understand it so that it becomes "an intimate friend". I am realizing that death may not be a fearful process but just a component of being a human being. As I was born and as I live, I will die.
And it may be the most exciting human experience ever! So many die and so many live. We can only accept what will be....Let's enjoy each moment! God bless all the soldiers. AMF

No Visible Cancer in PET Scan!

Wednesday, September 3, 2008

Last week I had a PET scan to see how good a job the chemo therapy has been doing at killing the cancer in the three areas the cancer appeared in my original PET scan several months ago. To my great relief that doctor called to report that there was no visible cancer but that I still had to do my eighth and last infusion this Thursday. (Had the PET Scan still showed cancer then I may have had to continue the chemo twice a month for two additional months.)

So currently I do my last of eight infusions tomorrow and then I have to get radiated 17 times to kill any microscopic cancer cells in the three tumor areas that might be hiding. After that I've supposedly got a 80% chance of being 100% "cured".

In reality I understand that because the cancer treatment I'm going through is rather carcinogenic itself I have a 10% chance of getting some other cancer within the next 20 years. But hey, I'll take the 20 years and the 90% chance it will be longer since I'm pretty sure I would have been dead in 4 years had I elected not to be treated this time around.

Neutropenic Hospital Stay

Sorry I have not posted in a while, killing Cancer is a full time job what with all the doctor appointments and medical tests (not to mention feeling poorly or desperately tired 70% of the time).

The most interesting thing that's happened since my last post is that I ended up in the hospital for about three days, a week and a half after my fourth infusion (half way through). It seems I was having a lot of sweats and was running a fever of about 101 degrees or so off and on for several days. When I mentioned it to my doctor's nurse she told me to go to the emergency room at UCSD and tell them I had a Neutropenic fever and that they would probably admit me.

Sure enough, several hours later the ER doctor was explaining that my ANC count was below 500 and that was not a good thing if I had some sort of fever in my body. So they admitted me to my own room (so I didn't catch someone else's kooties) and started pumping me full of antibiotics from Monday evening through late Wednesday afternoon. Sure enough they ended up killing whatever was causing the fever and got my ANC count way up with a couple injections of Neupogen.

Speaking of injections, they also insisted on giving me a shot of Heparin in the stomach (quite unpleasant no matter how pretty the nurse) every eight hours to "prevent blood clots". After a while I figured out that they try to do that with everyone admitted to the hospital and I was not really all that special. When I knew I was getting out on Wednesday I said, "Thanks, but no thanks" on the last couple injections.

One special note is that if you're going to get stuck in a San Diego hospital I highly recommend UCSD's Thorton hospital. It looks like a fancy hotel and as a patient you order your three meals a day from what looks like a hotel room service menu. The food was excellent and it's even served by someone in a room service uniform. (Best thing about it is you don't have to tip them!)