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The Last Is Not The End

March is Colon Cancer Awareness Month. Feel free to donate to any of your favorite cancer charities, including the Colorectal Cancer Alliance (for which I am a mentor volunteer)--during the month of March, your donation to the CCA is doubled!

More important, though, is that you take this month to focus on your own colon health. If you are 45 and older, or at high risk for CRC, make an appointment for you colonoscopy. Most insurance will cover it, and if they don't, tell the facility that you are going to pay cash and they will give you a more affordable option.

No excuses! Get your colonoscopy!

Appropriately, my last dose of chemotherapy for this round is happening during Colon Cancer Awareness Month. I have been back on FOLFIRINOX since December 20, 2023, with a few hiccups along the way.

I have not been blogging much about this latest round of chemotherapy because, well, I feel that I hit on the important points in my Caringbridge Blog, and then expanded on the experience in my book, Round the Twist: Facing the Abdominable. This round of chemo has been similar in physical and emotional side effects, so it seemed pointless to rehash all those week after week. We all have better things to do with our lives, including me--recovering from the drugs and focusing on my energy on fighting this latest recurrence of the cancer has been Job 1.

With the last dose looming just 24 hours away, I felt I needed to address something that was not quite explored in either blog or book--what does the "last dose" really mean for the cancer survivor?

The Last Dose

Throughout my treatments, I have tried to clarify to my readers that chemotherapy drugs are not like most drugs that we are familiar with. If you take two Advil, you'll see on the bottle that it says to take every 4-6 hours. That's because your kidneys filter the drug out of your system in that time. When the organs have done their job, there is no more Advil in your system--it's been removed by your body. The hope is that the Advil has done its job in that amount of time (usually treating inflammation and giving you some relief). If it hasn't worked, you take more. Etc. Etc.

But chemo is not like that. You've heard me say it a million times: chemo is cumulative in the body. But what does that actually mean? In the technical sense, this means that the liver and kidneys are not able to filter out the drugs in a short period of time which allows the drugs to build up in your system. I've been told that this process takes a minimum of 9-12 months after the last dose is given.

Let me explain this better. Imagine an empty water pitcher. You are told that you'll be given 6 cups of water which you will pour into the pitcher once every two weeks. Day one, you pour in the first cup of water, put it in the refrigerator, and then walk away. 14 days later, you go back to your pitcher and what do you see? Almost 1 cup of water waiting for you, minus a small amount that evaporated. You pour in the next cup, and repeat the process. As the weeks go on, the level of the water continues to rise. In the battle between evaporation and the standing water, the standing water wins. This is what is happening inside the body of someone on chemotherapy.

By the end of treatment, I will have six doses of chemotherapy swimming around in my system, my liver and kidneys fighting an uphill battle to get this shit out of me. Every week I get a blood test to make sure those organs are functioning properly (at one point, when I experienced toxicity from my first dose, my kidney function dropped, signaling that my body was struggling mightily against the drugs). If my numbers are good, I'm given the next dose.

This also means that side effects accumulate during treatment as well. If, for example, dose two brought fatigue that lasted 5 days, then with each subsequent dose, the length of time increases as well. With my fifth dose (at the beginning of this month), the fatigue lasted 10 days. Dr. Jacobs has warned me that with dose 6, I should expect that number to rise to two weeks. Same with neuropathy in my fingers--with each dose, it has lasted longer and longer, with dose 5 taking nearly two weeks to resolve.

Dose Six (the last dose) promises to be the hardest of all--not just for me, but for every person on chemotherapy for any kind of cancer. It's made even more difficult by our own mental health--we know it's the last dose, we're excited and relieved, but at the same time knowing this will be the most difficult recovery of all.

When we announce "I rang the bell today!" most people begin sending texts and emails, leaving voice messages, posts on facebook, all celebrating "the end of chemo!" The common misconception being that somehow the last dose is a throwaway, it carries no side effects--we are magically normal again.

This makes it very difficult for the cancer survivor to receive the appropriate amount of support that they actually need. Everything will be amplified, as that pitcher of water is now nearly full and our bodies are reaching their breaking point. It will be the longest stretch with the worst of the side effects, all of which will last longer than before. It will be another 6 weeks before hair begins to grow back, before appetite truly returns, and we feel ready to resume our normal activities.

Just because the last dose of chemo is given, doesn't mean that things have changed at all for the patient. Things are at their worst. I don't know how many times I need to say that, but I can't emphasize this point enough. The last is not the end.

While going through this phase after treatment, most of us are also preparing for further scans and testing to see how successful the chemotherapy has been--usually two weeks after treatment. Still fighting deep fatigue at that point, we also have to face a burst of new anxiety--it's time to undergo grueling days at the radiology department. There's no comfy La-Z-Boy recliner for us in the waiting room. And one of the more fun side effects of chemo is that burns our veins--any ordered CT, PET, and MRI "with contrast" means that we have to endure painful injections before and during the scans when we have to lie perfectly still. For those who experience joint and body pain from their chemo, they have to lie on cold metal scan tables for 30-60 minutes at a stretch.

This is all after chemo has ended. Cancer never ends. The long term effects of chemo take months and years to fade from our bodies.

So as I prepare for my final chemotherapy treatment (which begins tomorrow, Tuesday, and lasts through Thursday) remember a few important points:

  1. Most chemotherapy infusions last multiple days. Mine lasts 52 hours over 3 days. There are people who have 5 day infusions, and those with 7 day infusions. Be mindful that chemo is a long drawn out treatment, and that alone exhausts us.

  2. There are different forms of chemotherapy, the most familiar is infusions. But many of us (myself included) will take at least one chemo drug in pill form. Do not diminish this experience for your friend by saying "at least it's a pill." Remember it is still chemotherapy and you should still refer to it that way. Validating your friend's experience is more important than your full understanding of what's going on. I know that sounds a little harsh, but be thankful you don't fully understand it. Just support your friend, follow their lead, and use their preferred terminology.

  3. The last dose is not the end of the treatment. Side effects continue for months and even years, but so do scans, tests, and scary prognoses. Those of us with metastatic cancers will never hear the word "remission" so please don't say it. Most of us continue to be scanned for 10 years post treatments, and some will be scanned for the rest of their lives. There is no "end date" for screenings and constant vigilance.

  4. There will always be a fear of a recurrence hovering in the background of every single day. For every smile you see in a photo, remember there is fear and uncertainty behind it all.

My History: I was diagnosed with Stage-4C metastatic colon cancer in 2021. The cancer had devoured 6 inches of my sigmoid colon, crept onto my peritoneal wall, blew up my left ovary to 13cm, infected 6 lymph nodes, invaded and overtook my lower pelvis, and traveled to my liver. I had a colostomy, the surgeon removed a section of my peritoneal wall, and removed both ovaries. The liver tumors had to remain untouched due to their location deep within the liver. I had 6 rounds of FOLFIRINOX chemotherapy (4 drug regimen) in 2022, followed by 29 rounds of Intensity Modulated Radiation Therapy (IMRT) and another surgery to reconnect my intestines. I had 3 clear scans. I was placed on an adjuvant chemotherapy consisting of two drugs, which I remained on for 12 months. At a routine PET-CT (I get them every 4-6 months) the liver tumors reappeared, prompting my oncologist and surgeon to formulate this current plan of treatment: 6 more rounds of FOLFIRINOX followed by either a liver resection, radio-ablation, or histrotripsy. I will finish my last dose of chemo on March 28 which will be followed by an MRI in April--at that point, my team will determine which of the three procedures I will have. I have no idea what happens beyond that point, but I know that know one will pat me on the head and say "You're cured!" and send me on my way.

Roam around my website and learn more about my book! Maybe even purchase a copy for yourself or someone you know who might need it.


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