Comparisons and Standards

Take two people with the same ailment in the same room and one of the first things they will do is start comparing their ailments, doctors and treatments. This is normal. (People who have not had the ailment are not allowed in these conversations because they will insist on comparing the treatment their cousin's hairdresser's neighbor's dogwalker's mother in law had for a similar but different ailment, was treated by a different treatment protocol, and then died after month's in pain in a greatly emaciated state.)

Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.

I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.

One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years  now. Mine is still uncontrolled but is slowly being tamed.

When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.

Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.

My rheumatologist's office sees me every three months for now and I  have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.

Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.

This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.

I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!

I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.

Accident update

Here's the damage. There is a possibility the car is not totaled but the garage says its borderline. I had a very busy day yesterday dealing with the accident details.

I went over to the garage where the car was towed with the intent of cleaning out anything of value and seeing if I could find my driver's license and eye glasses. My purse dumped out so I thought my license might be there. The airbag blew my glasses off so I was wearing a spare pair. When I arrived there the man who towed my car told me the other driver was arguing with the police when he was towing the cars.

I packed up all sorts of stuff in the car - my Aruba ice scraper, about $5 in change, mittens, hat, shovel, maps, CDs, etc. I found my glasses under the seat of the car. Then I realized I forgot my phone so I couldn't take a picture. I decided I would have to come back. My drivers license was no where to be found.

Then I went to the police station to pick up the report. The woman noted that it was very long. The part about me, driver 1, was brief. I was driving down the road and the other car pulled out in front of me and we collided and I was taken to the hospital.

The part about the other driver went on and on. She changed her story. She argued with the police that it was my fault. She told the police I needed to take responsibility for my actions. Her husband showed up and told the police how the accident happened (even though he wasn't there) and argued with the police some more. Then he wanted to know where I was and what hospital I was in and how I was doing. They had to explain the HIPAA laws to him twice. Driver 2 was cited for failure to yield and not having a drivers license with her.

I called our insurance company who said that if she was cited she would probably be at fault. And that not only do we have collision insurance we have medical coverage that will take care of all the medical bills incurred in my fun evening at the hospital. Yippee!

Her insurance company then called me. Driver 2 argued with her insurance company as well. I had to send them the police report. I like the part that she wants me to take responsibility for my actions and she keeps arguing with everyone that its not her fault.

Then I decided to go back to the car to take a picture of it, get the last of the CDs out of the console and find my glasses that I had put down while I was there. Stupid me.

I decided since my license was really missing, I would apply for a duplicate online. Then my husband came home and realized he had forgotten that the police had given my license to him - they must have found it in the car. Grr.

Lastly, the appraiser called last night and he is going to look at the car today and will let us know if its totalled.

Today I will also stop by the hospital and see if I can get a copy of my CT scan report to read the gory details about the arthritis in my neck. I still have a fat lip and some muscle aches and pains - in addition to my normal pains but am doing okay.

One last note is that when they took me to the hospital, I was wearing clean underwear which was bright pink and matched the polish on my toes which was visible through the hole in my sock.

Approaching the cliff

I have my own personal cliff that I am facing. And it has nothing to do with finances. Money isn't everything as the old saw might say. My cliff involves my health, as always. I don't think of my health as a series of cliffs in anyway. It is a series of disasters, appointments, and procedures, where I might feel a pinch.

But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.

Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.

On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.

I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.

I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.

But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?