Wednesday, June 20, 2007

Hello I Must Be Going

If anyone would like to explain the logic behind this medical protocol I would LOVE to hear it.

Today I was supposed to start Taxol. Taxol is a taxane, which is class of chemotherapy drugs made from a Yew tree.

They administer it by IV and mix it with a detergent known as cremaphore. (Not sure of the spelling on that, will have to edit later.)

Cremaphore is an irritant, and many people are allergic to it. No one gets allergic to the Taxol itself, but they can have very adverse reactions to the detergent. SO, the medical community has designed a system. They had help from the Department of Motor Vehicles in the planning of this.

Part One: Load up patient with mega dose of steroids and Benadryl.

Part Two: Start Taxol and wait to see if patient starts having trouble breathing, is flushed, throat closing up...etc.

Part Three: If any of these reactions occur- STOP the Taxol and give more Benadryl and steroids and do it AGAIN.

Part Four: If reaction continues repeat part three. If the patient still persists in reacting to drug take them off it and either send them home if they can stop it or send to the ER.

Part Five: If patient does not have a reaction, follow step one and two and make sure patient knows that she will be there for over four hours every time she gets this drug.

Sounds like fun, eh?

Then along comes Abraxane. Abraxane is the drug Taxol that is NOT mixed with a detergent but is coated with albumin, a protein that is found naturally in the body. There is NO allergic reaction to it. There is no need for Benadryl or steroids and it takes only 31 minutes to infuse. And the best part? It is more effective.

Now the kicker:
They insurance companies won't pay for Abraxane UNLESS YOU ARE ALLERGIC TO TAXOL.
They would rather pay for the Benadryl, steroids, hospital stays and wreak havoc on your body then give you something gentler that works better.

Does this make any sense to anyone??
Is this thing on??

Now for me.

I go in today fully expecting to be in the ER by dinner time because I am allergic to just about everything. I told them this. I begged for Abraxane. Nothing worked. My dad was with me and we settled in for our four hour ride into hell.

Well, I never got there.

Today we discovered that I am allergic to Benadryl! Who in hell is allergic to Benadryl? I was once told by an ER doc that I should avoid it after I took it for a bee sting and had more trouble with the Benadryl than the sting. I informed my nurse of this but she said that "didn't count."

My face turned dark red, my heart was racing, my lips and arms were numb, I was sweating and freezing at the same time, I was having vertigo attacks and holding on to the chair for dear life. Before we started my pulse was 60. After the Benadryl it went to 112.

The nurse wanted to wait and see what happened. She had the marvelous idea that I would feel better and we could still do the Taxol and if we did and I was allergic to that too, well then she could always give me Benadryl!

Sometimes I think I am living in a Dr. Seuss book, I really do.

I asked, nicely, if it would be at all possible if maybe a DOCTOR could make that call and my oncologist came in and asked me what I was feeling. My dad tells me I made absolutely no sense in my reply. The doctor apparently only needed to look at my face, which resembled a death mask, and he told the nurse to unplug me and send me home.

I do not know what I will do next. You can be sure I am going to bring up the Abraxane.

Why do cancer patients have to fight for the meds that will help them and not harm them? Isn't cancer enough?

Tuesday, June 12, 2007

Yes, that is me

I have been getting a lot of emails!

The current issue of Mamm Magazine has an excerpt from my book in it. They took two chapters and condensed them into an article. My wish is that someone who reads it will take that extra step to be screened more carefully in order to prevent any more advanced cases of breast cancer being found.

It is ironic that this article is being published now, when I have been re-diagnosed myself with a more advanced cancer than I had the first time. I did push my then breast surgeon last YEAR to please give me an surgical biopsy of "my area of concern." But he said it was not necessary and that it was a hematoma from the core biopsy I had a month before. A year later, I am in chemo with a new breast surgeon. I can't unring the bell, but I wish I had fought harder.

Please, keep pushing. If you think something is wrong you know your body best. Push until you know for sure you are OK. And remember, this is just as important in post cancer treatment as it is when you are just beginning your screenings. I am lucky my new primary was found before it got any bigger and became untreatable.

Mamm is an excellent magazine. It touches on everything we are struggling with and celebrating. I am proud to be a contributor.

As I said, they had to edit quite a bit to fit into the magazine format, so I thought I would print the entire list of warning signs of a bad doctor for you from my book.

Warning Signs of a Bad Doctor

  1. Talks to you only in the exam room while you are undressed
  2. Never looks at you when you are speaking, but rather, writes furiously in your chart not listening to a word you say
  3. Has not reviewed your case at all prior to your visit. You know this because while you are perched on the iron table in your paper dress waiting for him, you hear him leave the exam room of another patient, then he is standing outside your door and you hear him remove your chart from the little cubby on the front of your door, flip through a few pages for 30 seconds and then he comes in. THAT is not what I call PREP. Either come in and open the chart and talk to ME or review it before hand at your desk in a proper way.
  4. He doesn’t wash his hands upon entering. He just left another exam room- do you really want him touching you?
  5. He makes no eye contact, isn’t quite sure of your name and simply goes through the motions of an exam. Or worse, never touches you. Never lays hands on you but writes up five prescriptions anyway.
  6. He acts as if we are all the same person- more like cars in a body shop than human. Once he opens the hood of a Chevy it is the same as a Ford.
  7. He doesn’t let you speak, ask questions, or express your fears
  8. He doesn’t seem to care that you have cancer. There is no empathy. He either tells you he can “cure you” or he says off hand “we’ll see if this works”
  9. When you question him about wanting a test or a certain chemo he makes a face because you “read it on the internet”. He then proceeds to inform you that anything you read is wrong and he is the only one who is right.
  10. He has the same routine with everyone, never thinks of you as an individual. You can tell from the way he is talking it is a rote speech he has delivered thousands of times. But he never puts YOU into the speech. You can tell your particular case is of no interest to him—he has done this thousands of times, he would like you to just be quiet and listen to what he has to say.
  11. You express a fear about your hair falling out and he makes a joke and tells you to stop being vain.
  12. He doesn’t take into account the quality of your life when he is lining up one harsh treatment after another.
  13. If you ask him about a side effect he says it “goes with the territory”
  14. He makes you wait—not just in the waiting room but even in the exam room where you are left there waiting and waiting. At least in the waiting room there were magazines to read! Once in a while, and if an apology is given then it is fine, but every time with no apology is unacceptable
  15. He is unavailable for after hours emergencies. OR if you finally do get through to him, he insinuates that you “bothered” him for nothing
  16. He won’t share your case and what he feels needs to be done with your other doctors.
  17. He never calls you with test results. I personally am still waiting for the result of a brain MRI I had in 2002 from a doctor who “forgot”. Thankfully, the radiologist told me I was ok.
  18. He thinks you are overreacting and might need some kind of counseling, anti-depressant, tranquilizer, etc. or you have fibromyalgia—when if he took five minutes to put your mind at east you wouldn’t need anything.
  19. He won’t let you bring your husband, brother, sister, or best friend in with you to discuss your case- all you are doing is taking up too much of his time.
  20. He doesn’t remember you. After six months of chemo he still has no clue who you are…. Don’t wait six months to discover this. Six minutes will tell you a lot about your doctor!

So, how many of you have seen a bad doctor??? Remember girls! They work FOR YOU!