Gwendie Rants and Raves: 5 Years of Living with Metastatic Cancer

GWENDIE

October was Breast Cancer Awareness month, as if I needed a special month to remind me of breast cancer. It was more than five years ago in 2007 that I discovered (and it was soon verified) that I have breast cancer. And not just any old kind, no-oooooo, I’m in the 5% of breast cancer diagnoses which are metastatic from the get-go. Now, at 5 years “out”, I’m in the 20% of metastatic breast cancer patients who are still among the living. So that’s a good thing, right? Well, yes, but with some caveats. It isn’t easy living with Stage 4 metastatic breast cancer.

But first I have a little rant I want to share with you. Forty thousand women (and 400 men) die each year from breast cancer. And they all had metastatic breast cancer, because you don’t die from earlier stages of BC. You die when it spreads to your brain (a favorite place for my kind of cancer) or your lungs or liver or bones (which is where my cancer had spread to when I was diagnosed) or some other less common site.

SO, to get to my rant, if we want to prevent women from DYING of breast cancer, then we need to find a CURE or, barring that, GOOD ways to treat it as a chronic condition so that we can live comfortably. That has happened for a lot of people who have HIV/AIDS if they take their drug “cocktail” faithfully (and have access to it). And they got that cocktail because loads of money and many researchers spent gobs of hours looking for a way to treat that dreadful disease.

But it hasn’t yet happened for folks with metastatic breast cancer. The percentage of money spent on research for a cure, or for treatment of advanced cancer, or just treatment for any stage of cancer by the leading non-profit cancer organization (think the Susan Koman Foundation) is tiny–about 7% of income. Lots of money is spent on “administration” (think fancy hotel rooms, big salaries, etc–typical of bigwigs in most big organizations), education of the public (is there anyone left in this country who doesn’t know about breast cancer?) and prevention (which means avoiding risk factors, most of which are out of our control, such as age of onset of menses, family history of BC, and others that are not yet proven (use of estrogen-based birth control for younger women or estrogen replacement therapy for older ones) or which are just good health practices (exercise, diet, less stress, etc.) What about looking for some treatments that aren’t the traditional BURN (radiation), SLASH (surgery) and POISON (chemotherapy)?

My eyes see red every time another pink product is associated with reducing breast cancer and used to raise funds for a cancer foundation, usually the Komen Foundation. PINK M&M’s, for God’s sake? I mean, I love M&M’s, and I’ve eaten them, even after having cancer. But I shouldn’t. Sugar FEEDS cancer cells. In fact, when you get a PET scan to see if or where you have cancer, they inject you with radiated sugar water and then scan to see where it goes. The HOT spots that show on the scan are cancer cells busily taking up the sugar, much in excess of normal cells. So why would we be encouraging people to eat sugar to fight cancer? Beats me. If I had any money to give to fight cancer, I’d look to those organizations who actually DO give much or most of their money to research, such as the Breast Cancer Research Foundation and the METAvivor Research Foundation.

Well OK, that’s my rant. I’ve been wanting to get that off my chest.

Back to living five years with metastatic cancer and the caveats. For me, and for most of the women that I personally know with advanced cancer and those who are on online sites for metastatic cancer patients, it’s a roller coaster–that’s a term often used– with periods of “stable” condition, almost always accompanied by some drug regimen that has side effects (we’ll get to this later), followed by a recurrence and a change in regimen–which could involve different drugs or radiation or more surgery. Then there are the periodic scans and blood tumor markers. Most of us get anxious before these scans/tumor markers, and even though the actual scans are not painful (assuming they get a vein on the first try) they can be nerve wracking. Then there’s the wait after the scan, from a day to a week, to get the results. And sometimes the results aren’t good, so it’s hard to assume the best in the waiting period. This sounds so tame in the writing, but it isn’t tame at all to actually go through the experience–over and over again.

And then there are the side effects of all the treatments, but especially chemo. The public knows mostly about the terrible nausea and vomiting the earlier drugs caused, but for most of us that is no longer a serious problem. New anti-nausea drugs work pretty well, along with older meds for GI problems and anti-anxiety drugs that also help. But there’s an incredibly long list of OTHER side effects that you can get, although luckily most of us only get a few from each drug, not necessarily the same ones as the next person. Things like fatigue so severe that you can hardly force yourself out of bed, or “chemo brain” where you can’t seem to keep track of the things you used to do without even thinking, or aches and pains in any part of your body, or losing your hair, including your eyebrows and eyelashes, or developing lymph-edema and having to wear compression sleeves, or losing your sense of taste so that everything tastes blah, or even awful, or developing neuropathy–loss of the sense of touch, along with tingling or pain–in your feet and/or fingers, or mouth sores that not only hurt like heck but also prevent you from eating most foods, or diarrhea or constipation (sometimes in the same person from the same drug), or painful swollen fingertips or toes that can lead to loss of the nails, leg cramps or fungal outbreaks and on and on. And these are just the ones that I experience at one time or another. Always there are two or more working at the same time, with fatigue almost always present. I won’t bore you with more but you can easily find them on websites about side effects of cancer treatment.

The point is that while the cancer may not be killing you at the moment, the side effects can be making your life miserable. And most metastatic cancer patients I know say that if the balance between side effects (or problems from the cancer itself) and a good quality of life gets shifted too much toward side effects, they insist that the treatment be changed (as I have done twice). And when effective treatments run out, we have no choice anyway.

So gang, so far this must seem like a real downer. So I’ll try to end on a more positive note.

Most of us who have metastatic breast cancer, knowing that we are in a terminal condition–could be soon, could be later– experience the following:

1. An outpouring of support and love upon diagnosis from friends and relations far and wide, which dwindles over time to a precious few who are always there. We so appreciate both kinds of support.

2. An enhanced sense of our natural surroundings–the birds, the weather, the temperature, the colors, the sounds, (unfortunately, not the tastes), the mountains (for me), the ocean, the lake, the rain…

3. An increased tolerance for uncertainty, otherwise we’d be driven crazy by the day-to-day changes in our bodies, the limbo-land we live in before, after, and between scans, and the probability that our life will be cut short.

4. An improved ability to listen to our bodies when they tell us we need rest, or rejuvenation, or meds to relieve pain, and the ability to respond to our bodies’ requests.

5. A respect for others who have problems in their lives, whatever those problems are.

6. A growing ability to accept what IS, rather than yearning or grieving for what WAS or what CANNOT BE in the future.

and lastly,

7. A desire to help others, especially those in situations similar to our own (in my case, I’m totally invested in the women in my cancer support group that meets weekly).

So there you have it; a rant and some raves.

Life goes on.

4 thoughts on “Gwendie Rants and Raves: 5 Years of Living with Metastatic Cancer

  1. Every word you wrote made me think of my sister. When we called the Cancer people for help with her expenses – they never gave even a word to us. So I agree with you when you say that people want to take advantage of the situation and make money and The Cancer Society is on place I never give a penny. Research is not what they use their money – expensive trips! I appreciate you writing about this dreaded thing and wish you lots of sunshine. By the way my sister died in 1975. In 1974 she had surgery for Vulvar cancer of the external female genitalia or Radical Vulvectomy. Love and hugs to you Gwendie

  2. I’d like to add to the rants: My mom died of BC at 65 and her 10 yr. younger sister was diagnosed at the same time and I was told because I was post menopausal, I wasn’t high risk. Now I’m told I am; plus since I have dense breast tissue I should get an annual breast MRI (in addition to mammograms) which I did and ended up having bilateral biopsies which thankfully were benign. Then I read that the MRI’s have an increased risk of false positives. One doctor said get them, another intimated it was a good income producer for the other one. One doctor said go off estrogen which made me miserable (no sleep, hot flashes, vaginal atrophy). The other doctor said he has patient’s in their 80’s that are on it and I had to gauge quality of life. Thankfully I don’t have BC but I feel like the monkey throwing the dart at the stock pages as far as certainty about the choices I make.
    Gwendie, thank you for putting it out there.

  3. In this age of everything being “awesome”, including things that are not, I admire your ability to write honestly about what having cancer is like.
    Gwendie, you’ve been through such a hard time and my heart goes out to you when I read your post. I also hope that a cure for cancer is found soon.

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