The Big Epic

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Nerd Notes from a “Cancer Imposter”

I’m beginning to feel like a Cancer Imposter. Friends and family keep asking me how I’m doing with the nasty side effects of treatment. After all, everyone knows that a cancer patient is exhausted, nauseated, bald or almost bald as all hair falls out, immune compromised, either skeletal or puffy from steroids, and more. That IS an accurate picture for many patients. But only for the ones undergoing chemotherapy or radiation. So far, my cancer journey has not included either of these forms of treatments thus I am not experiencing these side effects. (Whew! That’s one positive thing for me!) If I don’t look or act like a “normal” patient, does that mean I’m a cancer imposter? Of course not! But it’s hard to explain sometimes…

Selfie of woman relaxing

As I described in the back story to this round of cancer (If you missed it, read the summary HERE), previous treatment has been abdominal surgery to cut out the tumors. When quarterly scans in early February of this year showed that the cancer is back and is aggressively expanding, we expected to hear that I would need another operation ASAP. It was a shock to hear that I’m not a good candidate for surgical removal of the tumors this time around. No other cancer treatments can be used during the 6-8 week recovery period because they kill fast growing cells, including those needed for healing. Unlike prior rounds where cancer removal was simply cut-and-go, this time there are so many small tumors that it isn’t possible to eliminate all cancer cells via surgery. And in the 6-8 weeks of recovery from an operation, I would likely be back to the same place I currently am as the tiny cancer cells left behind would aggressively regrow into new tumors.

Why don’t I have the “normal” side effects of cancer treatment? Does Santa know that I’ve been good? Am I just lucky? Is God answering many prayers for me to have an easier time? Or am I a cancer imposter? Actually, NONE of the above reasons are accurate.

Traditional chemotherapy involves using a cocktail of chemicals to poison and kill all fast-growing cells in the body. This is often an effective way to eliminate tumors, but the poison does not pay attention to which cells it attacks. If the cell is fast-growing, it is killed by the chemicals. This includes cancer cells but also hair growth cells, cells in the digestion system, cells in the immune system, and more. This wide-scale chemical warfare results in the well-known side effects.

Radiation kills cells in one specific area of the body rather than killing all fast-growing cells. This means many of the typical side effects of cancer treatment are avoided, but since radiation kills both healthy and cancerous cells in the targeted area, the patient often struggles with painful localized side-effects. These include nasty problems such as difficulty swallowing, shortness of breath, damaged skin, stiff joints or infertility.

My oncologist drew out a nifty chart. (Good thing I used to type papers for med students years ago—I can read doctor scribbles just fine. HA!) He gave me three different options for treating cancer this time around. I could choose chemotherapy, which is 40% effective against my type of rare cancer. This would likely be the best option for fully shrinking the current tumors. I might end up on this treatment regime eventually, with all the typical side effects, but it is not a long-term treatment, so it doesn’t seem like the best option to try first. (Besides, I have no possibility of kayaking or backpacking this spring if I have to get chemo infusions every few weeks and am dealing with nasty side effects!)

cancer treatment options

Because I have two DNA mutations in the tumor cells, I am a good candidate for two different very targeted treatments. In both cases, there are limited side effects because these are not blanket-bombing, all-out war on a wide variety of cells. One treatment is already FDA approved, but it is only effective for 50% of patients. This is certainly a viable option. It meets the criteria of using a medication long-term if it is effective, but this option doesn’t actually shrink the tumors, just kills off specific cancer cells.

The third option is part of a Phase 1 clinical trial. (More about what that means in a future post…) There is extremely limited data at this point on how effective this medication will be, but it is described as “very promising.” In addition to killing specific cells that have the targeted DNA mutation, preliminary results show some shrinkage of tumors as well. This option has more uncertainty since rounds of trials are just beginning, but I can stay on it long term if it works well for me. If it doesn’t seem to do anything to fight my particular tumors, we can quickly switch to one of the above options instead. We decided to give this medication a try. Dealing with limited side effects is definitely a positive!

What am I experiencing so far? I have no side effects from treatment. On the other hand, there are challenges caused by the cancer itself. As the tumors continue to grow rapidly, they are putting more and more pressure on my internal organs. At this point, I’m having significant pain rather than just being uncomfortable. I wanna tell that biggest tumor, stop being rude! Figure out how to share the space in there! Keep your hands to yourself. (Oops! That’s what I used to yell at the kids when we were on a road trip. I don’t think the tumor is going to listen to me… Haha!) The pain meds cause some level of unsteadiness, fuzziness and/or sleepiness. But that’s manageable. The largest tumor hides just behind my bladder and is pushing hard on it. This means that in addition to pain, I have limited capacity in my bladder, so I pee small amounts frequently. Finally, because of the pain meds I’m taking, I have to take other meds to prevent constipation. I’m not a fan of taking a zillion pills every day, but if this will stop cancer growth and possibly shrink the tumor, I’m all for it!

diagram of tumor location

My oncologist says that these symptoms caused by the tumors themselves will significantly lessen within a few weeks if this targeted trial medication that I started last week is effective. Please cheer me along and pray with me (in whatever manner you support others) that I will be even more of a “cancer imposter” very soon, with no side effects or difficult symptoms at all! That will be a day to celebrate when we see that tumors are shrinking, and cancer is on the run…

Thanks for taking time to read this nerdy post! I’m learning all sorts of new information about how cancer treatments work. Now that I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

  • click HERE to see frequent mini-updates plus links to the pages below;
  • click HERE to see a compilation of all of the mini-updates archived in one place; and
  • click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
  • Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

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If you hate to miss the latest reports from my Cancer Journey, you can bookmark this site or you can scroll to the bottom of any page and sign up for email notification whenever I make a new post.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, and other types of support. I can’t imagine doing this alone…)

2 Comments

  1. Oh Jill…there are no words. You are a very strong lady and I really admire you. All I can do is pray for you and send you hugs.

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