Thursday, April 16, 2009


Howdy friends and family!

I received the super-secret clinical trial Crisco, errrmmmm, Amitriptyline and Ketamine combined topical today. And I'm patient #89. Shoot dang, it would have been fun to be Patient #99, as in Get Smart Agent 99. Got it?

The label states: Caution: New Drug - Limited to Federal Law to Investigational Use. The 15 tubes are white, super-sealed in three white boxes, which are super-sealed into one large white box. Very clandestine feeling.

To avoid a long trip into Seattle during the rush hour traffic, I asked the research coordinator if the topical could be sent to their satellite office where I received chemo - about 15 minutes from my home. He wasn't sure this could be done as the topical could only be transported by a nurse or doctor or the patient. Wait a minute. The courier transported thousands of dollars of chemo fluids each day, but he couldn't take one overly-white box?

Okay, I understand that Ketamine is a "Club Drug" known as Vitamin K. It's snorted, smoked or injected. Large doses of Ketamine produce effects similar to PCP such as dream-like dissociative states and hallucinations. We are talking large doses of a liquid or powder. For heavens, sake, these are white tubes smaller than a tube of toothpaste, in the white boxes inside an overly-white larger box. I guess if some junkie was desperate enough, they could club the courier over the head, steal the topical and rub the contents of all 15 tubes on at once for a buzz. But why couldn't the junkie do the same to the nurse or doctor? I'll stop now . . .it just hit me weird.

A bright yellow slip of paper fell out of the overly-shite larger box, stating "ALERT! When seeking emergency medical care for any reason . . . . You must bring your Study Medication with you to any Health Care Provider." Now that's a little scary.

I completed about 10 pages of peripheral neuropathy intensity and sleep questions. I will have to complete the same or similar survey at the end of each 3 weeks of using the topical. I'm excited about the possibility that this will help alleviate the burning ring of fire toes.

Going to the satellite clinic, I had the opportunity to talk with the crazy oncology nurse. We talked about my port coming out May 15 and mentioned that I could skip the port flush scheduled at the end of April. Yippeee! I so hate getting injected with the Lidocaine several times around the port, then doing gymnastics with my arm or coughing to get the port to take or receive fluids.

When I first started chemo back in October, I brought up the idea of putting the finger nails into cold water to minimize the nail loss. This nurse thought I was reading too much on the Internet, never heard of it. After showing her my nails today I stated I should have at least tried the nails in cold water - what would it have hurt!? Her colleague - a new nurse - said she recently attended training where this was talked about and the results were great. Surprise, surprise!

Sooooo . . . for those going through chemo right now, just do it. Don't give a flip if your nurse or doctor has never heard of this! It's your body, take control of your treatment. What could it hurt?

I was able to do the two hour lunch break three days this week and it has made a difference already! I can get through the afternoon without dragging. My employers should be happy because I feel more productive. I'm not pre-cancer energy, but it's a start. And I'll take it.

I'm walking in the Relay for Life on May 15th and asking friends, family and anonymous peeps to help me reach my financial goals by donating $10 . . . just $10. Come on, you can do it! Just click on this link and it will take you to my home page to donate. Plus you get to see a pic of Baby Posh Spice. Thank you so much for your help!!!!

I hope the sun is shining in your area of the world. There is much to be thankful, isn't there? God bless!


Welcome to Cora and Alli, two new Journey Supporters!


  1. Just browsing the cancer blogs on a rainy afternoon. I love the title of yours. I am learning a lot from reading other people's experiences and blogs. I am a 7 year cancer survivor - 2 bouts and a stem cell transplant. I am starting my own blogging community. Please stop by and visit when you have a chance. Take care, Dennis

  2. Thanks, Dennis, for stopping by.

    I popped over to your blog . . .do I need to be a member of the community to see some of the links?

  3. Renee,

    Ooh, experimental meds? That's pretty intense. But that's very cool. I was considering whether I'd go for clinical trials, should the need/opportunity arise. I don't know, part of me is still too big of a chicken... Kudos,

  4. Renee, that's the ONLY reason I didn't lose my nails-- the cold water trick! A couple of more experienced survivors told me to do that when my nails almost fell off and it worked. During my last two rounds of chemo, my fingertips and toes were in ice water. So, yes, spread the word on that handy little trick.