Cancerversary Time

Today is my "cancerversary". It has been three years since my diagnosis. It's kind of ironic that CML awareness day is the same day I was diagnosed. I have to admit in this situation I'm in right now, it feels like the glass is half full. On the one hand I've survived three years. On the other hand, quality of life is not that great.

Original Art by Elizabeth Munroz

So here's an update. My fatigue was debilitating enough to make me beg my doctor to take me off my Sprycel. Since my diagnosis I began taking 100mg daily. I got PCR-U within 4 months (no sign of disease) and it has continued to remain in remission.

But, I have lost a quarter of my body weight due to ongoing nausea. My hair started to turn white (I now dye it). My skin is so dry it's a constant battle to keep the sores from getting infected. I wake up with headaches, and I have throbbing in my head and neck most of the time. I try to just ignore it, but sometimes it gets very distracting. Okay, I told myself, I gotta live with this. It's the only way. 

But 18 months ago, I began to have fatigue and it increased exponentially so that in the last month or so, I had to lie down every few minutes because I was so exhausted. You can't even imagine what it's been like to have to go somewhere in the car. Upon arriving anywhere, I would have to literally back up and lean against a wall, just to have it hold me up.

When I lost my cat, I didn't have the energy/strength to call it to come home, or to walk the neighborhood to search for it. That was very stressful. Thankfully, my cat came home nine days later. More stress because he needed vet care. It was very difficult for me to physically handle. My cats mean a great deal to me.

My oncologist was either inexperienced with Sprycel or just plain ignorant. When I told her about this side effect she emphatically said it wasn't related at all. But, I spoke to a pharmacist associated with Bristol Myers Squibb, the company that manufactures Sprycel. He told me that at least 25 percent of all patients taking Sprycel, have fatigue as a side effect. And that is considered significant, therefore a major side effect. I really lost my respect for my oncologist and immediately found another.

I'm aware there are patients who go without treatment after being in remission, so I discussed it with this new oncologist. After lowering my dosage to 80 mg. for a couple months, she agreed I can take a little vacation from Sprycel and see what happens to the fatigue. In the meantime, I will have regular testing close together.

I have been off a little over a week. Guess what, I drove myself 90 miles to visit family, attended a performance, stayed overnight, went out for breakfast and drove 90 miles back home the next day. Two days later, I drove 60 miles and spent the day at a hospital waiting for a loved one to come out of surgery. You know what that can be like.

Just a few weeks ago I wouldn't have been able to do that at all. I am aware that dying is a possibility if my CML cannot be controlled. But, living with a quality of life that feels like death while taking Sprycel... well... It's hard for me to accept that the rest of my life should have to drag out many years in that condition. Would it be worth it?

Sprycel and Fatigue

Every month the drug company calls me on the phone.
Voice: "It's time to renew your Sprycel. Would you like to do that?" and I tell them yes.

Voice: "Do you have any changes in symptoms to report?"

Me: "Yes... I am soooo exhausted and fatigued!!!!"

Voice: "Okay. I will note that. Would you like to speak to the pharmacist?"

Me: "Sure... what the heck..."

Sometimes all I can do is rest.
Pretty Kitty is my girl Queen Bambi

The pharmacist gets on the phone. I tell him my symptoms. We discuss red blood cells which are a little low on me, but it doesn't quite add up to anything serious. Because other factors are not off.

Then he says: "Ten to twenty-five percent of all patients taking Sprycel report the same symptoms. That is considered to be a significant percentage and is therefore a side effect to watch for."

The oncologist I have been seeing categorically denies that my fatigue has anything to do with the Sprycel. It's pretty sad that she doesn't know that the company who makes Sprycel considers it to be a normally expected side effect.

I have already made a second opinion appointment with a new oncologist not connected to the one I have been seeing. I will see him June 17.

Employment Enjoyment

My little brother sat at the side of the road until some city folks stopped by. He had some veggies from our garden for sale. Roger was a great business man even then. He sold a whole bushel basket of squash for three times the going rate! The customers drove away quite happy because these were home grown, and sold by a most informative little boy.

Some decades later, aside from holding down a full time job, Roger and his wife sold items at swap meets and flea markets in order to make ends meet. Another decade later, he was so successful that he was able to give up his job and start his own business selling electronics from his store and which still included traveling to various events, setting up tables and selling to the public.

I often accompanied him working for a day's worth of pay, and the enjoyment of being with my brother when his business brought him to my area. I first worked with him in the mid 1970's. The night before, we would pack up his van, awaken before dawn, go to the even location, unload the van, set up tables, display merchandise and sell to customers, some which became long time regulars. Often Roger had others working for as his business grew.

Within the last decade, as my health issues became more of a burden, we adjusted the type of work I could do for him. No more loading or unloading heavy boxes. No more putting up the tables. Eventually, just putting merchandise out, organizing displays and pricing items. Then, later, simply being cashier. The last few times my brother was in my area, all I could do was drive to his location and hang out with him a couple hours, instead of all day, and sometimes answering questions from customers. It was great to be with my bro and catch up on family matters. Most recently, all I could do was meet him for lunch or dinner at a convenient spot on his way home. My energy and general well being was so low.

Today, Roger and his wife were at Pacificon, less than a two hour drive from me. It's been more than a year since we have seen each other. So, Kats and I drove out to see him. We arrived before set up time, which was before three in the afternoon this time. Thank heavens! There were all the familiar tables loaded with electronic merchandise still needing some organization for display.

It was like getting back on a bicycle after not having ridden one for years. It came naturally to me to help out. But, before you know it, I had to go sit down and just watch. As what usually happens in my everyday life, I got my second wind, and began to help again.

And there was that redundant fatigue dogging me. Repeatedly taking a break was necessary. I hope when I get on chemo, and become stabilized, I will get some of that energy back!

It was wonderful to hang out with my little brother and his wife. And great to socialize with customers, some of them with familiar faces and joyful greetings.

Check out my brother's business here!