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Thursday, March 1, 2012

An Extra Day....

 On February 28th, the American Cancer Society asked that we blog about what we would do with our "extra day."  I didn't blog about that....but decided maybe I would today.

You see, like most people in the world, it wasn't an "extra day" per se, but a day in which we still had responsibilities, appointments, jobs....

I got up late...and slowly.  I have been having severe back pain.  Of course, since I'm still fighting cancer, that brings all of its own fears....is it cancer? What is happening with my back anyway?

The biggie, though, was that I had to drive down to Kettering to get a Zometa treatment.  Zometa is an IV infusion of bone strengthening medication.  It is the same as Reclast....but with cancer patients with metastatic disease it actually helps decrease the bone cancer.  The bad thing is that it can cause osteo-necrosis of the jaw...where the bone dies and the skin pulls away from it.
I'm a little scared about that because I went from having the treatment once every 12 weeks, to monthly now.

It's hard to believe I have been in treatment for this bout this long....I really believed that when I finished last July, I'd be done with it.  Now, I'm keeping my fingers crossed that the Tamoxifen continues to work.

I also sort of struggle because people see me, see that I have hair, and except for the fact that I'm doddering around because of the neuropathy in my feet and the back pain, I don't look like I have cancer.  But I do.  I'm still in treatment.  I'm still fighting.

I also cringe when I hear people say that they are cured of breast cancer after being "out" for 5 or more years .  I know you're never "cured."  It can come back at any time.

For the stage IV survivor, it is even scarier.  We are considered to have a chronic disease...but it is one which in all likely hood will eventually kill us.  The question is when.  My oncology nurse told me yesterday that one of the doctors is afraid to look in on one of his long term MBC survivors.  She's been fighting it for about 6 years....the cancer keeps on mutating and as one drug becomes ineffective, they switch her to another....and then they start all over again because the cancer sometimes is no longer resistant to a drug she had been on before.  The doctor is afraid to look at her and see where she might be that day.  Late stage breast cancer patients have a habit of going downhill suddenly.  I have lost two friends in the last year where they were doing well in March, but by July one had died, and the other died in the late summer.

The the side effects can be awful.  The side effects can be heart issues, neuropathy, liver damage and secondary cancers (cancers caused by the treatment of the primary cancer).

In addition, there are very few people who understand the position of a stage IV survivor.  Our drugs are expensive.  I am afraid that if my husband doesn't find a job soon with insurance which will cover me, then I won't be able to get insurance....or at least we won't be able to pay for it.... It is an insult to some degree to hear all of the cancer groups tout "early detection saves lives."  Yes it does.  But we don't qualify.

Not only do we not qualify, but very little research is done to develop cancer treatments for late stage cancers.  Basically, they throw stuff at us which has been tried on newly found cancers and see if it works.  Few drugs and protocols are actually looking at us.

Now to top that off, the whole national budget for cancer research has been cut....and thus, even less will come our way.

I'm grateful for an "extra day."  Even if it meant that part of it was spent driving down for treatment and sitting in a treatment room.  I still can see and smell the flowers....like these orchids I managed to bloom.  I am amused as here in Ohio, I am able to get Cattleya's to bloom, where as in Connecticut, I could never bloom them, although I could phalaenopsis  and some members of the oncidium alliance.  Go figure.


6 comments:

Sherrie Spangler said...

Lisa, you're in my thoughts and I hope all the best for you as you continue the treatments. Spring will be here soon!

Shady Character said...

As I've said before, I can't even imagine being in your shoes. From what you've said, it sounds like not even many people with cancer can really understand where you're at, either. I guess all we on the outside can do is offer our encouragement. The orchid is beautiful. I've been buying Phalaenopsis lately. Yes, that's how far I've fallen.

Ruth Anne Olson said...

The flowers are beautiful, as are you. It is brave of you to share these thoughts and feelings. They help me understand better what you and others go through. It is also interesting to hear about the clinical studies. And it is appalling to think that people can only have health care when they are employed.

My thoughts and prayers are with you.

Lisa Broberg Quintana said...

Thanks, Sherrie...spring makes me cringe a little as I have so much to do in the yard and I'm afraid I won't be able to do it! Sitting and quilting doesn't hurt....

Thanks, Shady. You KNOW I've been a "Phal gal" for ages....that's what makes me giggle as the phals look awful....but the catts, well, they keep on putting out for me. :)

Thanks, Ruth Anne. You've had stuff to deal with too. I'll take all the prayers I can get! :)

Lisa

Del said...

Thinking of you. Sending good thoughts your way. Hoping we can still meet face to face one day.
Love, Del-at-home

Anonymous said...

Wishing you all the blessings, hope & peace you deserve. I don't know you but I know where you are from watching my mom. Stay strong!