Stage 4 Cancer Bronco Ride

I have been sitting ringside to my mom’s cancer treatment for Stage 4 adenocarcinoma now for 40 days. I am here to tell you something that may surprise you. Cancer treatments are the fricking Wild West of Western medicine. It’s a frontier town. It’s not something you can bank on. There is no sheriff. It’s not domesticated or safe. It’s not something doctors stumbled upon, like discovering a secret key to health that unlocks a door and they are just pointing the way.

For as far as we’ve come, chemotherapy and radiation are still only the bluntest of instruments. And the human body, the human physiology, the human psyche, are the most sensitive of surfaces. If chemo and radiation are the hammers, the human being is a bug. I appreciate the effort because if we can cure cancer then that would be an amazing outcome. My argument is that doctors and the medical field are absurdly not forthcoming enough about what cancer treatments will do to the life you still have. I’ve seen families torn apart from cancer treatment. I’ve seen a life destroyed by it, even as the cancer “survivor” technically survived. That was also long ago. But now, twenty years later, and being closer to the treatments than ever before, I am going to offer some pointers to folks pondering cancer treatment.

One of the worst days of your life is when a doctor tells you that you have Stage 4 Cancer…or any kind of cancer. I don’t think that docs do a good enough job of explaining to people what cancer even is. Cancer isn’t an infection. It’s not a virus. Cancer cells are the result of what amount to spelling errors in our DNA. Simply put, our DNA starts making spelling errors in genetic code. These codes tell our body what kind of cells to make and where to make them. When it starts “writing” the wrong kind of cells you get too much of what you don’t need. The cells build up and sometimes then that new location ends up not working properly. Healthy cells get replaced. It can expand and spread to other places.

When they catch cancer cells spreading to these other places in your body they call that Metastasis. It’s then also called a “metastatic” cancer. In some hospitals they shorten this to “mets”.

META-Changed or Altered

STASIS-A position, state, or condition of anything.

For example, you can end up with cancerous breast tissue cells creating abnormal growth in a completely different part of your body. Those breast tissue cells don’t belong there…right? In time they start disrupting that organ’s normal function. They do tests from a biopsy “slide” and test for what kind of cells are there. This is how docs determine where your cancer originated. So if they find breast tissue “markers” showing up in your lymph nodes or in your kidney or brain…they at least know where it began. It would be metatstatic breast cancer.

So when you are metastatic, it means that these fast growing cells are not only growing at the site source of your cancer, but that they are now migrating beyond that original location and can now potentially impact your health on multiple fronts.

I am not saying that people shouldn’t seek cancer fighting treatment at all. But here’s the deal that people need to understand: these treatments are radical solutions. Just because people have cured their cancers doesn’t mean that we should treat current solutions with an attitude of naive trust. And the docs aren’t usually forthcoming about what’s really involved. So, you get the bad Stage 4 cancer news. You meet with concerned docs, you get second opinions. But now it’s down to it. It’s time to get the final word on what your treatment plan will be. Ours was Cisplatin and Radiation. Every Monday we get Cisplatin infusions via IV and then M-F we get radiation.

Cisplatin and my mom have become good pals lately. Cisplatin is used for chemotherapy and is quite common. What doctors may not tell you is that this is a heavy metal. It contains Platinum. When you receive this treatment, via IV infusion, usually up to one dose per week of a 6 week duration, you are having a heavy metal poured directly into your bloodstream. It goes throughout the body. It’s a toxin to humans. If you had this amount of heavy metal in your body from any other means you would seek medical attention immediately to try to get this out of your body. Your infusion team tech will be wearing a facemask, special gloves and a gown when they take the bag of Cisplatin out…just to handle the IV sac. What Cisplatin does well, like many heavy metals, is it disrupts how our DNA writes code for cellular growth. It kills stuff. Those cells writing those spelling errors will ideally get the hammer, but so will your healthy cells. Cisplatin can’t differentiate. What we rely on during chemotherapy is that the patient can tolerate the symptoms of having the healthy cells in their body destroyed while it is also destroying those spelling error writing DNA. So, it’s a yard sale on health. Docs need to be telling patients that it has the potential to lead to something possibly worse than the cancer-especially if you already have a terminal diagnosis or a diagnosis of a form of cancer that usually returns quickly. What’s the efficacy there? Who gets to decide what the best course of action is? Is life worth extending at any personal cost? They should name the game of roulette for what it is. I feel like cancer treatments are advertised as cures for cancer when really they are parallel alternatives to cancer. They are possibilities. They are hope in a bottle. They are the dream of a future. Docs don’t tell you enough that the treatment itself can shorten your life even more than the cancer will. Or that your time while in chemotherapy, can make your life so miserable, that perhaps not doing it would actually make you live longer. The lasting impacts from things like Cisplatin can be permanent, giving some people symptoms that they’d rather not live with. Life at all costs, cure at all costs, seems backwards to me. Dignity and quality of life, not quantity of life with high “cure based symptomology”, makes more sense to me.

But my experience with this so far is that the docs are like “you have cancer, we are going to put you on Cisplatin. We’ll handle everything, just show up for your appointments. We start next Monday, be here at 9, things might get rough, do you have any questions?” They say this with the same emphasis as “this morning I made a ham and cheese sandwich, it was quite tasty, I have half left over in my bag, I’ll eat it later…do you have any questions?” I would love it if any one of the docs we have seen, and we have seen so so so many by now, had simply said, “Cisplatin is what we’ll be using. It’s a heavy metal. We will essentially be poisoning your body to the point of maximum tolerance and hoping that you can sustain the symptoms long enough for us to also kill the cancer…and then after that hopefully it won’t come back. You’ll likely feel the worst you have ever felt in your life. You will feel like dying. You will need a support team of people around you. Your family members will need to basically give you hospital-level medication management at home. They will need to monitor your food intake and hydration needs. Life as you know it is likely to cease for the duration of the treatment regimen. There is a long list of potentially unpleasant symptoms that will last even after treatment finishes. Cisplatin is especially hard on your kidneys and rates of AKI (Acute Kidney Injury) are very high. Symptoms from AKI include dangerous levels of electrolyte imbalance, which can lead to further urgent hospitalization during your treatment.” Instead what we have experienced is that once you have a dire symptom, that is when the docs are like “yeah…umm…that’s pretty normal for this kind of treatment.” And it’s not just our docs. Every doc I have talked to tends to paint cancer treatments like someone that they aren’t allowed to gossip about. Hey, it’s okay. I won’t tell anyone how crappy chemoradiation really is, so come one, tell me what you know. Okay? Don’t tell me after I found out the hard way. It just seems like a culture of covering up how bad it can get and I don’t understand why this is so. So if you are about to try to eradicate your cancer and you are sure that you want to do the chemo route I’d say this…don’t assume the worst but plan for the worst. Ask your doctor, no…demand that your doctor, tell you about the three worst patient’s outcomes from the last month who are on your same regimen. Get in touch right away with the social work team at the cancer clinics. Make your treatment plan for who will be doing what, a month in advance, at the home where the patient will be staying. Be prepared. Because the doctors won’t be the ones doing patient care at your home.

And if I was reading this to my mom, she’d barely be able to hear it…because another loud side effect of Cisplatin is permanent hearing loss. The docs didn’t tell us about that either. And the drugs that they put you on to combat the nausea and vomiting from heavy metal toxicity all come with their own side effects. Maybe this is all different with younger people and the symptoms can be well tolerated by some who are not my mom? But in the elderly, in those over 75, (like my mom) the patients and caregivers simply have to be more informed in what the realities are. Cisplatin and things like it should not be presented like business as usual. This is a life changing treatment that reaches into every area of your life, and it’s not always for the better. That’s the assumption that I feel that western medicine carries though…that this is always going to be better for you. Physicians have to be more diligent and more clear in making sure patients and their caregivers are saddled up and ready to handle what amounts to a 6 week bucking bronco ride. Some people will stay on the horse. Others will be thrown off, more than once. Make sure your doctor tells you what can throw you off and what the realities of that are, well before your treatment begins.