living meaningfully — in limbo

i’m in limbo.  at least that’s how my doctor described it during my visit yesterday.  it was my first time in the MRI machine/her office since i finished with my first course of treatment about two months ago.  (my scans show a stable tumor for the time being.)

the 20 months of chemo didn’t end with fanfare, bugle calls or a big party.  they sort of just ground to a slow halt and ended rather inauspiciously when, over the course of a few weeks, i decided it was time.  my doctors last identified shrinkage of my tumor months ago.  and they’d told me that any rounds i completed beyond 12 were just a bonus, especially if the treatment no longer demonstrated any usefulness.  adding to those considerations, the 20th round was the hardest one in a long time.  so i decided to stop.  and — even though i urged the people closest to me to play devil’s advocate and talk me out of it and convince me to push through the final four rounds (24 being the maximum considered “safe” in terms of toxicity) — no one wanted to.  my doctor included.  she didn’t even want to see me in her office for a formal visit.  she responded to my carefully thought-out cost/benefit reassessment email with just a few words:  “you’ve gotten a lot further than i expected,” she said.  so that was that.

and then, yesterday, the first time i saw her after this non-event, she announced that i’m in limbo — a state, she said, that’s likely to lead to anxiety and depression.  of course, she told me this (with the kind offer to prescribe anti-anxiety/-depression meds, should i find myself needing them) after running through the various worst-case scenarios that could present themselves over the coming months:

  • if my tumor grows within the next six months, it likely indicates i’ve developed a resistance to temodar — the 20-round chemotherapy drug.  which means several options will be on the table:
    • start a new chemotherapy regimen, PCV, which promises to be much more aggressive and harder for my body to handle.  according to new data that’s recently come out of europe, PCV has proven to be marginally more effective with low-grade tumors than temodar, which is why my doctors are considering it for me, despite the fact that they haven’t utilized this treatment modality for any patient for 15 (!) years.  i was hoping for a new therapy, not a traditional IV-style one that my doctor essentially guarantees will leave my body and life in shambles for at least nine months.
    • try just one of the three chemotherapy drugs that make up the aforementioned triple-threat regimen.  not a lot of data about how that one performs on its own, however.
    • do radiation.  previously, this option was not on the table at all, given what the doctors described as too-significant-to-consider cognitive side effects that could last the rest of my life.  again, however, if my body has developed a resistance to the temodar, my doctor suggests that perhaps the radiation would actually be kinder to me than the PCV regimen described above.
  • if my tumor does not grow for six months or more, then i’ll simply go back on temodar when (not if) it does start to grow, in order to hold the tumor at bay.  which isn’t a fun option, especially considering how hard that last round was, but at least it’s a known quantity, something i know i’ve gotten through before and can likely survive again.

so, yeah, i guess i can understand why my doctor mentioned that many patients experience anxiety or depression when they’ve finished their first course of treatment and are simply waiting for the other shoe to drop.  or, on the other hand, for the better news, which could potentially be no change for six months, or 12, or maybe even several years.  at that point, my doctor says hopefully, maybe some of the targeted therapies that are now in the clinical trial stage for patients with more aggressive forms of brain cancer will have filtered down to the low-grade level, and i’ll have more treatment options than i do now.

but, of course, all these what ifs and maybes and perhapses add up to just one thing:  limbo.  and so my challenge for the coming months is to keep the possibilities — the positive and the negative ones — in some sort of equilibrium in my mind.  i think, if i can do that, i’ll be mentally and emotionally prepared to handle the worst-case scenarios outlined above while at the same time preserving my ability to function joyfully and meaningfully each day during this wait-and-watch period.

this is a challenge i certainly feel more prepared to handle than i did almost two years ago to the day when i was first faced with the news of my diagnosis.  i now have two years under my belt spent…

…living with constant uncertainty about what tomorrow will hold.

…mourning the passing of my old life and embracing the new.

…discovering that a life i never could have imagined is somehow more closely aligned with the one i was meant to be living than the life i’d always imagined.

…building a strong network of trusted allies to help me through the hard times — including professional supports, along with family and friends.

…learning that asking for help is not the worst thing ever, and that bravery and pride don’t get me anywhere but scared and lonely.

…taking the first steps toward leveraging the lessons i’ve learned thus far to help others in similar situations.

i’m not saying limbo won’t be hard.  maybe i will ultimately end up facing overwhelming anxiety or debilitating depression.  you never know what emotion will slap you in the face on the day you’re least expecting it.  but i do believe i have the tools and supports to weather whatever storm is heading my way, along with the capacity to celebrate the beauty of each day i’m fortunate enough to be able to get out of bed and live my life.

so here’s to limbo — like the rest of life — being a journey, and not a destination.

8 thoughts on “living meaningfully — in limbo

  1. “Discovering that a life i never could have imagined is somehow more closely aligned with the one i was meant to be living than the life i’d always imagined.” Just beautiful.

    Welcome back to the blogosphere!!

  2. “Discovering that a life I never could have imagined is somehow more closely aligned with the one I was meant to be living than the life I’d always imagined.” Just beautiful.

    Welcome back to the blogosphere!!

  3. Noams, you are one of the best decision makers I know. Your strength continues to amaze me. Thank you for allowing me to come with you on this journey.

  4. Immediately after reading your post, I read the following: A man found an eagle’s egg and put it in a nest of a barnyard hen. The eaglet hatched with the brood of chicks and grew up with them. All his life the eagle did what the barnyard chicks did, thinking he was a barnyard chicken. He scratched the earth for worms and insects. He clucked and cackled. And he would thrash his wings and fly a few feet into the air.

    Years passed and the eagle grew very old. One day he saw a magnificent bird above him in the cloudless sky. It glided in graceful majesty among the powerful wind currents, with scarcely a beat on his strong golden wings. The old eagle looked up in awe. “Who’s that?” he asked. “That’s the eagle, the king of the birds,” said his neighbor. “He belongs to the sky. We belong to the earth – we’re chickens.” So the eagle lived and died a chicken, for that’s what he thought he was.

    Thanks for being a true eagle and not the chicken variety!!

  5. Thank you for sharing your journey. Your strength, courage, honesty and openness continue to amaze me. I hope you know how much I love and care about you and how lucky I feel to be your friend!!

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