My Cancer Story: Bad Ass Cancer Survivor

In honor of September being Blood Cancer Awareness Month, I'm sharing my story of living with leukemia. The WHOLE story.

Zazzle.com

Part 4

How do I live with this? Am I still angry or scared.

Before I was diagnosed, I had started a new growth phase of my spiritual journey as a Christian. For a few years previously I had been doubting a few things about what I believed and the whole Christian culture thing.

 Someone I worked with at the time invited me to his church, so I went to their Wednesday evening services for about 6 months. Their faith experience was different than anything I had previously. I received prophecies and then finally the overwhelming acceptance that God really does love me.

By his good grace, I knew that when I was diagnosed. And even though I had my human doubts, I also had a new sense of well-being, that whatever happened would be okay. I didn't want to die--most people my age don't!--because at the same time I was discovering my writing gift and was excited by the possibilities. And I had lost a bunch of weight--over a hundred pounds all told from my highest. I had hope.

But this spiritual journey can be a whole other series. Suffice it to say now, I got what I needed. And be careful when you pray for more faith. It doesn't just come. You have to go through something to earn or to realize it was there all along.

I was a little angry, however. Especially at the fact that here I was, getting serious and being successful at taking responsibility for my health and WHAM! I'm broadsided by something out of the blue. So like my life. I joked if I ever get to my goal weight, something will probably kill me the next day.

But then, I took onto account as far as cancer goes, I'm lucky. Treatment has been easy and accessible. I don't need chemo that makes me sick and knocks me out of all of life for a year or more. Right now, it mostly just a pain in the butt.

But not even a big pain. I've talked to others who were diagnosed later in the progression of the disease (It has 3 phases--chronic, accelerated and blast crisis) and needed more aggressive treatment. Mine was caught very early, it seems. For some, side effects of Gleevec are difficult to live with and thye need to try one of the other treatments. Anxiety and other psychological issues make it a harder journey for some.


I don't know how this will play out, where God will take me with it. It's been a bitter sweet experience, but at this point in the journey, now that all the flurry of frequent doctor visits, etc. is over, I can see lots of good that has come from it.

Tomorrow: Blood Cancer Awareness Month and YOU!

Ps-the dog is Faith the Bi Ped Dog. In case you're wondering how she came to be here.

My Cancer Story: Lucky?

In honor of September being Blood Cancer Awareness Month, I'm sharing my story of living with leukemia. The WHOLE story.

Thanks again to zazzle.com

Part 3

When last we saw this intrepid blogger, she wan in the office of an oncologist, having just been informed she tested positive for Philadelphia + Chronic Mylogenous (or Myeloid) Leukemia.

And I was scared and angry. At that point, mostly scared. I started crying, not full out sobs and wailing, but tears and sniffs, anyway.

Most people aren't comfortable with other people's tears. Not even medical professionals who's job sometimes involves giving people bad news or helping them cope with it. My doctor, however, took my and and said, "There's no reason to be scared. It's very treatable." And we scheduled me for a bone marrow biopsy to confirm the blood test results. I was given a booklet from the Leukemia Lymphoma Society and sent on my way.

I'm the kind of person who knows a little about a lot of things. So it was a challenge to read and understand what was going on with my rebellious blood cells.

There are two basic types of leukemia, acute and chronic. Acute, of course, progresses quickly. I've talked to people who felt sick for a few weeks and got to the doctor just in time to be treated. Even a few more days delay would have been fatal. Chronic takes it's time. It can still progress to the fatal level but does so more lowly.

CML, though a rare form of cancer, is most common in the elderly, but can occur at any age. At this time there are about 23,500 people living with CML. Only about 2.9 percent of that are children or youth. In my age range, only about 2 in 100,00 people have it.

Thanks to the National Cancer Institute

I'll spare you the details about the five different types of blood cells. Suffice it to say, they all come from stem cells. What happens with Ph+CML is chromosomes in the stem cells, for some reason still unverified, go whacko. Pieces break off the bottoms of the 9 and 22 and translocate. The little bit left of 22 and the little bit of 9 that attached to it is called the Philadelphia Chromosome because it was discovered by researchers at the U of Penn in Philly. This is the cause of CML.

So the resulting new little mess directs the production of a mutant protein that causes an abnormal amount of white cells to be made. When left undetected and untreated over time, the mutant white cells don't mature enough to do their job and don't die off normally, leaving an overabundance of useless cells that crowd out healthy red cells.

Treatment for this kind of leukemia used to involve all the horrors of chemotherapy, and for people in advanced phases or those undergoing bone marrow or stem cell transplants, it still does. I, however, am LUCKY.

Lucky because in the early part of the last decade, a new therapy was approved that targets the production of the mutant protein with relatively minor side affects. I responded well and early and was declared to be in remission less than 9 months later. I have a good prognosis of surviving long enough for something else to kill me in my advancing age.

From Cancersymptomspage.com

My treatment, Gleevec, is the first generation and was considered the magic bullet. Two slightly more advanced drugs have been developed, Tasigna and Sprycel. Each has side effects that are mostly manageable and often go away completely. Each have possible serious side effects as treatment continues. The general consensus among oncologists is for the patient to remain in treatment as long as possible. When stopping treatment after remission there is a 50/50 chance of the cancer returning in a more aggressive form.

Even though I'm not "cured," I've come to be satisfied with where I am. A bone marrow or stem cell transplant might cure me for good, but since I'm older and have other medical conditions, the rigor of chemo and totally destroying my immune system after I'm in remission might be deadly.

I was also lucky I had very good insurance at the time of diagnosis. Gleevec is over $6000 a month! Now I have access to a patient advocacy program that provides Gleevec for me at a minimal monthly cost.

If you would like more information about CML or any other type of blood cancer, the Leukemia Lymphoma Society is the best place to go.

Tomorrow: How do I live with this? Am I still angry and scared?

My Cancer Story: The Big Infection and What It Told Me

In honor of September being Blood Cancer Awareness Month, I'm sharing my story of living with leukemia. The WHOLE story.

Part 2

So, where was I? Oh yes, in pre-op, all prepped, hearing my WBC was 28,000 and praying they wouldn't cancel surgery to give my lap-band to help me lose weight.

Dr. Blackstone

They didn't. Surgery went as scheduled and it was great. BTW, my surgeon was Dr. Robin Blackstone of Scottsdale Bariatric. She's one of the foremost in her field with a comprehensive program of education and support.

In a few months, I lost 77 pounds, and felt great. Things were going fine. Just fine. I was on my way.

To another infection. In February, over the course of a week or two, a burning feeling developed in my lower left leg along a vein. It was like a burning robe there. When I finally went to get it checked out by my PCP, she had me see the venus ultrasound dept. first. The tech did her thing and gave me the report, folded and stapled to take right to my doctor. Not good. I snuck a look at what I could on the elevator between floors and discovered I was headed for the hospital.

It turned out I had a dandy case of cellulitis, which is a skin infection under the skin. A few little germies sneak in through a minute loss of integrity in your hull, so to speak. Then they set up a happy little colony where the sun don't shine and proceed to be fruitful and multiply, in my case along a vein where the circulation stank to begin with.

I was admitted to the local hospital. Remind me to post the hilarious diatribe I wrote about that stay sometime. IV's of intense antibiotics were my fate. Despite the 4 days of heavy IV antibiotics, they weren't totally pleased with my progress so I ended up with a PICC--a surgically placed venous catheter that allowed me to go home and adminster my own antib's and go about my life. It happened over the long February weekend so I only missed like a day of work. I'd missed about a week in December for the bariatric surgery and I didn't want to miss much more.

But even after the hospital and their toxic waste medication, my white count only went down by 3000 to 25000. Distressingly curious, especially since I was treated at home for three weeks. When the count didn't drop after that, well...

The next step was to the hemotologist. I had forgotten hemotologists are also oncologists so I ended up on the floor when I called the hemotologist and they answered the phone with, "Oncology," said in a chipper voice. I booked an appointment. And there were tests.

In the meantime, as the curious and smart are prone to do, I researched my symptoms. I googled "causes of high white blood count." I ended up here. I clicked through most of the links and decided Chronic Mylogenous Leukemia (CML) was the best fit. Click here for the list of symptoms.

Everything fit pretty good. Well, fatique, I was born tired but was feeling pretty good since I had just lost weight. Night sweats. Sure, but I was menopausal. But the infections. I had rarely been sick and it had been years since I been on anitbiotics for anything. Then, like five in less than a year? Fishy. And losing weight before surgery. My PCP had prescribed an appetite supressor to help with that but would only let me stay on for so long because it's addictive. Even after I stopped, I continued to lose weight without trying too hard. And I have to WORK to lose weight. That was fishy, too. And my skin was pale, almost see-through.

So, when my oncologist (or onc for lazy typists) told me she was pretty sure I had Philadelpia + CML, I wasn't shocked. I was scared and angry. But not shocked.

Tomorrow: How bad and what to do?

Writing What You Know

When I started my first novel, A Box of Rain--well, technically the second--in 2008, I followed the old advice-write what you know. I knew very little about novel writing or myself as a writer at that point. I knew about teaching and schools. So, it started out about a teacher who's marriage is going to hell fast. She develops a relationship with another teacher who helps her through and they fall in love, etc. In the end, she ends up a teacher married to a teacher, which is actually quite common. And boring and predictable--to me, anyway. It didn't help that I was disillusioned with the education field, big time.

I devised an alternate ending which involved a relationship with somebody who wasn't a teacher and that was better, but...meh.

So I thought, who would take my MC, challenge her to the nth degree and put her in an environment she never planned on. Hmm. I remember sitting on my sofa, laptop on lap and thinking...an actor. Meh...maybe. Ah! A movie director! This became Another Place on the Planet.

But, I knew very little about filmmaking. But this director character stuck with me. He wasn't going away. So, I researched filmmaking.

For about a year, I checked out and read books from the library about directing, producing, assistant directing, the language and little recognized but important areas of making movies. I found websites and studied a lot about the politics and lifestyles. I am by no means an expert, but I know more than I used to and it was enjoyable.I appreciate movies on different levels so much more. It made me wish I wouldn't have given up on my theatrical leanings in my college days and would have pursued some field of it like costume or set design. Much like my MC wishes she wouldn't have dropped her music.

My next stand alone novel, What Doesn't Kill You, involves filmmaking, too, to a degree. I figured why waste all that new knowledge I had acquired? I threw in dressmaking, of which I know a bunch. And Leukemia, which I also am familiar with.

My sequel to Another Place on the Planet is Places Bright and Dark and has me researching sex addiction, co-addiction and recovery. I'm slightly amazed at how some of the knew information I'm already familiar with. Writing what I know. Hmmm...