Grrrrrreat!

Let’s see… where did we leave off? Ahhhhh yes, an iffy brain MRI and a pending “neck to knees” CT. Short and sweet of how things came out: GRRRRREAT!  Sincerely. They’re as wonderful as one could hope. “Neck to knees” there is nothing new or unusual on my CT scan. The typical pancreatic cyst that we’ve noted since the very beginning of all this cancer mess, is still there, unchanged in size. No clue what kind of cyst it is. That will be something to irrationally obsess over for the next year, until another CT scan comes along. LOL! As for the possible artifact on the brain MRI… it was indeed an artifact on the imaging. There is nothing new to note in the brain, just the same old damage. Next peek at the cranial contents due in six months! Yay! 

Sooooo, let’s talk about what else is “new”. Survivorship. This is something that has become more of a hot topic on the cancer scene. With the advances in research and treatments, more and more patients are moving along to “life after cancer”. Oddly enough, this subject wasn’t much discussed by experts, until the past 3-4 years. Basically, the subject is still in its infancy! I find this strange, given how many survivors have been walking around for decades. Yet here we are. 

2013-2016

Being 9 years out from stage IV “death sentence” diagnosis, and rapidly approaching 6 years off treatment of any kind, I’m now deeply entrenched in survivorship. I’m not even sure how I got here. Yes, I am keenly aware of every ghastly thing I endured between April 2013 and July 2016, but that was active treatment. That was being a PATIENT. When did being a patient morph into being a survivor? There was no “This is your final brain radiation.” Obviously, we hoped after EVERY trip through gamma knife, that it would be the final one. But that was never a certainty. It still is not! There was no “ring the bell” moment of DONE. There was no “This is your final immunotherapy infusion.”. There was no “You’ve taken the last of the inhibitor pills.” Hell… I still have some in the fridge! That’s a little weird… right? LOL! I was never a typical sickly cancer patient. At least I never felt as though I was. But I also never had the  stereotypical “end of treatment”, when the switch to survivorship is officially flipped. The more I learn of other survivors, the more I find that I’m not so oddball. There are many of us, seemingly dropped into this middle zone… this even newer new normal! My friend Todd Angelucci has a helpful podcast to address “Survival Mode”. His podcast encompasses topics covering surviving diagnosis, surviving being a patient, and yes, even that awkward post treatment “see you for your next scan” zone we call “survivorship”!

Survivorship (this subject varies by definition of start time. For my personal use, I am referring to the stoppage of active treatment). Not as simple as expected. Adjusting to survivorship is STILL a weird transition, and I’ve been at it since July 2016! Part of the issue, is that we’re never truly “done” with cancer. It really is a permanent “new normal”. The treatments may have been put on pause permanently, for a few months, for a few years… buuuuut, the mental aspect and side effects are eternal. They will be there forever. Even brain radiation or surgery isn’t going to clear that ish out! I’ve yet to meet an individual who has gone through cancer, and has a zero level of stress about it. There is a certain level of anxiety, of what a patient has gone through, or might go through again. For the lucky ones such as myself, the stress may be quite low. In others, the anxiety level may perhaps be high enough to classify as a case of PTSD. Even at a low level, this makes it “messy” to try to return to life as before. Life will never be the same, no matter how hard we, or those around us, try to make it so. 

age appropriate preventatives

What sets anxiety off? 

  1. Not knowing for certain whether the cancer will recur. 
  2. Wondering how long it may be before the cancer most certainly will recur.
  3. Routine follow up scans.
  4. The “we’re done with routine follow up scans”.
  5. Recurrence of a friend or family member’s cancer.
  6. A friend or family member with a new cancer.
  7. “Preventative” health checks/scans/shots at benchmark ages.
  8. A side stitch, hiccup, headache, itch, twitch, too hot, too cold, sore, tired…

The list can be long and sometimes totally irrational.

I have admitted to myself that my life was threatened by my own body. That sucks, and some days it’s difficult not to be concerned that it could happen again. The feeling of “loss of control” is horrible. Yes, there are some permanent side effects from the treatment, but now I’m surviving. I woke up today, and made the choice to continue trying to live as though the bad parts that came with the cancer never happened. At the very least, those parts and pieces are tucked into the past. That’s all the control I have. It’s all the control anyone and everyone has ever had… to try to live our best life. Life is terminal for all of the living.

I’ve posted some links below from the experts on life after cancer. Do yourself a favor and find what might help you. Meantime, here is a short list of things I personally try to do to ease the general weirdness that is “survivorship”. 

  1. Acknowledge the feeling as it occurs, and face it. Face how I FEEL (emotionally) about it,  separate from how I AM physically.
  2. Take small bites and baby steps. It worked for diagnosis. It worked for treatment. Most days, it works for survivorship. Sure, we all need to look ahead to take care and plan for our future, but we also need to take care of today. Some days, looking any further than today, may be looking too far.  
  3. Try my best to be mentally well rested. Nothing works harder than tired to wreck rational! Tired is an expert with panic buttons.
  4. Get some exercise. Walk. Stretch. Just mooooove.
  5. Visit with positive people. Those folks who always leave me feeling better than when I came into the conversation. 
  6. Keep eyes and ears on new treatments and research. I like to see what is in the pipeline. Should I ever have to face a recurrence, I’d like to see how treatment options may have improved/changed!
Survivorship

LINKS TO THE PROS:

National Cancer Survivorship Resource Center — www.cancer.org/survivorshipcenter

Cancer Society (Life After Treatment brochure) — https://www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/life-after-treatment-next-chapter-in-your-survivorship-journey.pdf

National Coalition For Cancer Survivorship — https://canceradvocacy.org

National Cancer Institute (survivorship page) — https://www.cancer.gov/about-cancer/coping/survivorship

CDC (life after cancer page) — https://www.cdc.gov/cancer/survivors/life-after-cancer/index.htm

The new “new normal”…
Niki News April 2022