Seems like lately when it comes time to share news with my friends, the news gets harder to deliver and the timing gets more and more ironic. If it isn't pounded into your brain from every advertisement and program you see or hear, you are still probably quite aware that it is Breast Cancer Awareness month. And interestingly enough, I was diagnosed originally 7 years ago in the month of October. I was 34. It was a month after my birthday and my wedding anniversary. So October is always a difficult time, though its always mixed for me as fall is my favorite time of the year and I look forward to the crisp autumn air regardless. I've tried to cherish each one of those Octobers since then. I haven't always been the best at it. Its hard to do that "live every day to the fullest thing". You wear yourself out and sometimes you forget. But now once again if I weren't aware before that my time (and yes all our time) here is limited, I have a new reminder. And its time I just come out with it to all of you. The truth is we are no longer treating my cancer with the goal of eradicating it all from my body. We are now taking the palliative approach to treatment. (therapy that relieves symptoms, such as pain, but does not alter the course of the disease).
Visit caringinfo.org ("Only close friends and family know how sick Liz really is, She wants to spend her time doing things that are important to her, not visiting doctors, She told this to her doctor and together they decided to make that happen". Information for those planning ahead, family, caregivers and legal advice.) Many of your questions regarding what this means can be answered here.
That does not mean I am not continuing treatment at this time. As a matter of fact all of the running around and pushing and my disappearing from online is a direct result of my insistence that indeed I was feeling more cancer. Though in a great deal of pain I got myself to Charlotte and my former caregivers to confirm it. It was a long and painful weekend-but I consider it a miracle that Dr. Mitchell had an appointment open on Thursday, that there was one spot open for an MRI on Friday evening (and later I was to find out it was the only time slot between Huntersville and South Carolina), and that by Tuesday my results were being evaluated and new treatments assessed and that once again I was proven right. That is why it is important to FIGHT and to TRUST INSTINCT. Had I stayed where I was? The results would have been unacceptable-a much earlier, more painful demise. (See the difference between having trouble getting phone calls returned and a doctor who asks "What do you want? An MRI? What pain meds do you need?") And though our goal is now to minimize pain and lengthen the life span, I have been incurable technically since my recurrence. Stage IV/metastatic breast cancer is by definition incurable. Though many of us can go through periods of not having active disease. I have been fortunate to have these. But now we have reached the point where the cancer has progressed beyond available treatment options. That does not mean that in managing this illness something new might not come along between now and the time that it eventually takes over. So we continue to hope and continue to treat. And I do have years rather than months which is very positive. And there's always the chance of a miracle or spontaneous remission, which does happen. We will continue to hope and pray for this to happen. But it is time to speak frankly about what we are expecting and what we are waiting to understand about my illness. There are still some questions, which is why I hesitated to send this, but at the very least it seems the time is right to share what we do know.
The main problem is the cancer in the bone/spine. The body and specific areas of it can only tolerate certain amounts of radiation over a lifetime. I have had so much radiation in certain areas that it is impossible to re-radiate them to kill the cancer. So the goal of my radiation oncologist at the moment is to keep the pain from becoming overwhelming and to treat with a new procedure, which will hopefully take out as much as possible in the bone, without compromising already treated areas. This will be done by an injection of a radioactive substance that mimics calcium. My bone will absorb it, and the radioactive particles will go to work on the cancer. (My urine will be radioactive, so if you have some weeds that you want eradicated give me a call and I'll drink some water and head right over.) I will also be doing a new form of chemo via pill. Xeloda. (Basically the pill form of 5FU, for those who have done chemos before). It is supposed to be easier to tolerate (well easier than adria/red devil, but then again so was that last stuff, and I handled the hard stuff better than the easy stuff?!) So it will target the rest of the active cells in my body. The docs are still back and forth over the situation with my liver and lungs, but I think truthfully once they have all the same scans that my prior doctors have had, it will put everyone on the same page. The written reports say one thing, the scans something else. And as my new doctor says "If you put three doctors in a room and ask for their opinions, you will get six!".
So what does all that mean? Well I asked that very question to my radiation oncologist in reference to the timeline. Since when we reach these points in our lives we have to start making plans (hoping for the best, planning for the worst as they say). I tried to get him to say I had 10 years but he told me I was ambitious (me ambitious?). Cancer grows slower in the bone. So if for some unlikely but grand reason it is really only confined to my spine I have about 5 years. If it is indeed in my liver and lungs (where Doctor Mitchell(CLT) counted about 10 areas that he was quite confident were troublesome-bummer) then I have about 2 or 3. I know I have been fortunate to have had the time I have had. As the odds for metastatic patients surviving are 20% making it past 5 years. Certainly years are better than months. But I do want people to ask themselves if they knew they only had 5 years at the maximum, what would they do with their lives? The reason I ask this is not for morbid purposes. Many cancer research sites/resources count 5 years as a success. If you are 35 and only get 5 more years I wonder do you see it that way? A success to me is a full human lifespan. I have something that I believe needs to be discussed.
As I have said, I think we are all pretty much aware of Breast Cancer. What I don't think we have is a lot of education and knowledge to help women make informed decisions, or to understand how the disease operates. We see the same facts over and over...1 in 8 women...do an exam once a month...and we are taught how to do them. But I wish they would change the name to Breast Cancer Education Month. And teach the ones that really make a difference and that women and the general population are not told.
Like...Did YOU KNOW?
Breast Cancer that has spread to other organs such as the lung/liver/spine etc is still Breast Cancer? (Its based on the type of cell and where it originated, not where its located.)
Metastatic Breast Cancer (Cancer that has spread-you learned that from me by now huh?) is technically incurable. It generally will recur many times, though we can learn to teach people to live with it as a chronic condition especially with newer treatments available. This can help alleviate fear, and get women (and men) to be tested sooner.
While it is less common in younger women Breast Cancer is generally more agressive in younger ones?
Mammograms are helpful, but not necessarily the best exams or the way in which most cancers are found. Many are confirmed with sonograms, MRI's, and PET scans. These tools are much more effective. Also in reference to mammograms. THE REASON MANY YOUNGER WOMEN ARE DENIED MAMMOGRAMS IS NOT THAT ALL MEDICAL PROFFESIONALS DON'T CARE, BUT THAT YOUNGER TISSUE IS DENSER, MAKING MAMMOGRAMS HARDER TO READ. It is hard to see the cancer in dense breasts, so sonograms and biopsies and MRI's are more effective. The lobbying for younger women to get the mammograms is a bit misplaced. Lobbying for better diagnostic testing...a better test than a mammogram...would be more helpful in general. Mammograms help yes, but they could be better.
Most women who have known risk factors do not get breast cancer. Also, most women with breast cancer do not have a family history of the disease. In fact, except for growing older, most women with breast cancer have no clear risk factors.
A diagnosis of breast cancer does not automatically mean the loss of a breast or the loss of the hair. Though this happens very frequently, there are choices in treatment. You have options. Women should not fear the treatment more than the disease.
Getting it early may not always keep it from being life threatening, but it can extend the life and increase the quality of it if it is found.
These are just a few facts, but they are the ones you just don't hear. There are more. So much money gets thrown at organizations for finding a "cure" or a "vaccine", but what you don't see are those metastatic patients for whom that option comes too late. They need help now. Financially...Emotionally..
.Physically. More and more people are learning this, but it comes slow. For more information surf the web for details on your own. And visit sites like
www.metacancer.org . Go beyond the obvious...go beyond the pink...
Shared with all my love and hope,
Lauren
