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.
Lisa Quintana's Quilts, art quilts, gardens and observations of the world...not necessarily in that order.
Showing posts with label Metastatic breast cancer. Show all posts
Showing posts with label Metastatic breast cancer. Show all posts
Thursday, March 1, 2012
Friday, October 21, 2011
Metastatic Cancer and Breast Cancer Awareness Month
I've been meaning to write about this for some time. You see, October 13 was Metastatic Breast Cancer Awareness day. I wanted to digitize my wedding picture to start it...You see, October 13 is also my wedding anniversary. We were married in 1990, and in February 1993 I had my daughter...then in November of 1993, I thought I felt a lump but didn't go to the doctor about it...because no on in my family had ever had breast cancer, and why should I? I was only 33. In April, 1994, I was diagnosed with breast cancer. It was a 3 cm tumor with one lymph node involved..which I think made it stage 2B. It was much bigger than they thought.
Then in December 1997, they found micro-calcifications on the same breast which had the tumor. I had a mastectomy and discovered in January 1998 that there was a metastases to my bones.
I often say that I had the word "remission" because that gives the uninitiated the concept that maybe you're cured. It just means that there is no discernible disease. Once you are diagnosed with mets, you're stage IV and no matter how "good" you look and how your blood tests come back...it is considered a chronic disease and it can re-appear quite some time later.
Like 14 years later. Like me. My numbers are up and I'm hoping that the current Tamoxifen treatment will work. I really have trouble thinking about going back on chemo...I'm still struggling with the nerve damage I got from this last course of treatment which lasted 9 months. I'll probably never run again. Heck, I'd take that if I could have more time. I'd like to see Meg graduate...I'd love the thought of seeing her married....or started on her adult life. While others are looking forward to playing with grandchildren, I'm just hoping to make it that far.
Its an odd thing. Currently, there's a trial being offered for people who have metatastic breast cancer at the Roger Williams Medical Center in Providence, Rhode Island. They are testing to see if modifying T-cells (the cells in your immune system which fight the baddies like cancer) and modifying T-Cells and using Interleuken-2 with it will work. I'm tempted. I'm really tempted. But I'm also afraid. I don't know if trying to pursue other treatments would work. I'm not sure about traveling from Ohio to Providence, even though it is within 2 hours from where I used to live and I'm sure I could do it. What if it didn't work???? They talk about biopsying your tumor...well...it's in my bones...I suppose they could go after a biopsy on my shoulder, and maybe the sternum...but the others, the ribs and the vertebrae, well, they're a little tricky...and I'm not really sure how easy it will be to get to the spot on my pelvis...
Sitting and waiting in never-never-land....the word "remission" and "chronic" is beginning to sound better...at least you're still alive.
I regret that most of my married life, my poor husband has had to live with someone fighting cancer. I am saddened by the fact that my daughter doesn't remember a healthy mother...one who ran...and hiked and did a lot of really physical things. I'm even more saddened by the fact that she has to be afraid that she's going to get cancer...or that I'm going to die while she's in college.
But I'm alive. I will continue to fight. I hope you will too.
Then in December 1997, they found micro-calcifications on the same breast which had the tumor. I had a mastectomy and discovered in January 1998 that there was a metastases to my bones.
I often say that I had the word "remission" because that gives the uninitiated the concept that maybe you're cured. It just means that there is no discernible disease. Once you are diagnosed with mets, you're stage IV and no matter how "good" you look and how your blood tests come back...it is considered a chronic disease and it can re-appear quite some time later.
Like 14 years later. Like me. My numbers are up and I'm hoping that the current Tamoxifen treatment will work. I really have trouble thinking about going back on chemo...I'm still struggling with the nerve damage I got from this last course of treatment which lasted 9 months. I'll probably never run again. Heck, I'd take that if I could have more time. I'd like to see Meg graduate...I'd love the thought of seeing her married....or started on her adult life. While others are looking forward to playing with grandchildren, I'm just hoping to make it that far.
Its an odd thing. Currently, there's a trial being offered for people who have metatastic breast cancer at the Roger Williams Medical Center in Providence, Rhode Island. They are testing to see if modifying T-cells (the cells in your immune system which fight the baddies like cancer) and modifying T-Cells and using Interleuken-2 with it will work. I'm tempted. I'm really tempted. But I'm also afraid. I don't know if trying to pursue other treatments would work. I'm not sure about traveling from Ohio to Providence, even though it is within 2 hours from where I used to live and I'm sure I could do it. What if it didn't work???? They talk about biopsying your tumor...well...it's in my bones...I suppose they could go after a biopsy on my shoulder, and maybe the sternum...but the others, the ribs and the vertebrae, well, they're a little tricky...and I'm not really sure how easy it will be to get to the spot on my pelvis...
Sitting and waiting in never-never-land....the word "remission" and "chronic" is beginning to sound better...at least you're still alive.
I regret that most of my married life, my poor husband has had to live with someone fighting cancer. I am saddened by the fact that my daughter doesn't remember a healthy mother...one who ran...and hiked and did a lot of really physical things. I'm even more saddened by the fact that she has to be afraid that she's going to get cancer...or that I'm going to die while she's in college.
But I'm alive. I will continue to fight. I hope you will too.
What is the Army of Women?
A program of the Dr. Susan Love Research Foundation, the Army of Women initiative is dedicated to recruiting one million women of all ages, ethnicities, with or without breast cancer, to sign up and participate in innovative breast cancer research studies. After signing up at www.armyofwomen.org, members are then contacted via email blast about new studies seeking volunteers. They can either sign-up for the studies online, or if they do not qualify, they are encouraged to forward the information to a friend or family member. Every woman over 18 is welcome to participate, whether a breast cancer survivor or someone never affected. There are currently more than 20 breast cancer studies seeking volunteers through the Army of Women. The full list of open studies seeking volunteers like you are listed at:www.armyofwomen.org/current.
For more information, visit www.armyofwomen.org.
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