The End is Nigh

Goodbye to all that, before too long...

Goodbye to all that, before too long…

In less than five months, Clio’s treatment will be done. No more chemo, no more steroids, no more need to call the clinic or get pumped full of antibiotics or spend time in the hospital if she gets a fever. They’ll remove the port that’s been in her chest since three days after her diagnosis.

Five months sounds like a long time, and relative to her overall length of treatment — a little over two years — it’s not a particularly small portion. But over the past several weeks, it’s started to feel like we’re on the home stretch, albeit a lengthy one.

When other people hear this, their reaction is inevitably “that’s great!” or “a light at the end of the tunnel” or  “you’ll have to have a big celebration!” Which are all completely understandable and lovely reactions.

But they don’t reflect how I feel. I mean, yeah, I won’t exactly miss having to deal with all the medications, or the steroid weeks, or the many inconveniences. But my feelings of relief on that front are far outweighed by the anxiety I’m feeling about the end of treatment.

Over the past year and a half-plus, as miserable and stressful as it’s been at times, at least we’ve been actively *doing* things to treat Clio’s cancer. We have some sense of control. But once she’s off treatment, that sense — however illusory it may be — will be gone. Ain’t nothing we can do to keep the cancer from coming back if it wants to come back. All we can do is watch and wait and hope.

Many people ask if there’s some sort of test they’ll do to declare Clio completely cancer free at the end of her treatment, but the answer is no. She’s been technically in remission since the end of July, 2012 — 28 days after her treatment began. The bone marrow biopsy she had at that point detected only statistically insignificant residual disease. This is the goal of the intensive first phase of treatment, and it’s a goal attained for the vast majority — something like 95% — of kids with Clio’s type of leukemia.

So the following two years of treatment aren’t a matter of getting her into remission. They’re a matter of keeping her there. If left untreated after initial remission, the leukemia returns 100% of the time. It’s hiding there in her body somewhere. All it takes is a single cell. (For more on the meaning of remission as it applies to leukemia, read the last section of this.)

But endless research has determined that for her subtype of leukemia, the protocol she’s been on, for the length of time she’s on it, has the best possible chance of destroying any last traces of cancer. Doctors hesitate to use the word “cured,” but once an ALL kid is in remission for 5 years (so, three years after the end of treatment, in Clio’s case) relapse is extremely rare.

When Clio’s treatment ends, we won’t be completely cut off from the medical world — thank God. There will still be periodic visits to the clinic to get blood drawn for complete blood counts. (Gee, how stressful will waiting for those results be?) Our Nurse Practioner, who is our primary point of contact at the clinic, has made it clear that we can call her at any time, about anything, which is comforting. (She told me about a mom whose son is 28, and has been in remission since he was 14, who still calls her occasionally.)

But she also told me that in her experience, end of treatment is second only to initial diagnosis in terms of the stress and anxiety it causes parents.

I know that once Clio’s off treatment, any little thing that happens with her — any change in her energy level, any bruise, any fever, any virus, any belly ache or nosebleed — will strike fear into our hearts. We’ll have to remind ourselves over and over and over again, that all the little things we know as telltale signs of leukemia can also be (and almost always are) completely benign.

I have faith that over time we’ll worry less, and exhale more completely. Maybe once we get to that five year mark, we really *will* have a big celebration. But I think the first months, maybe even the whole first year, are going to be rough.

Of course, on the off chance that Clio relapses, it doesn’t mean there aren’t more options. Plenty of kids relapse, are treated again, and are completely fine. Some relapse two, even three times and end up being OK. But, of course, relapsed leukemia is much harder to treat. You’re in a much more tenuous position, and the treatments are much more aggressive and dangerous.

And, dear God, the idea of having to start from scratch and go through it all again? All the terror, the anxiety, the hospital stays, the medicines, the clinic visits, the utter disruption of our lives? All I can imagine is crumpling if it were to happen. Completely crumpling.

People have commented throughout this crappy little boat trip how brave I am, and Alastair is. What I don’t think they realize is just how brave we’re going to have to continue to be even as we reach the shore.

 


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19 Responses to “The End is Nigh”

  1. Caroline whalen says:

    You can add that clementine box to your collection in 5 months :)

  2. Tara says:

    Thank you so much for this. We have friends whose son has just completed chemo for a rare liver cancer, and while we’re all celebrating this milestone, your post is a good reminder that it isn’t just all over and totally back to normal now. I’ve been following your story for a long time, and I’m so glad to hear that things are going well with you all. I want you to know that your writing is also helping me be more mindful about how to best support my friends who are going through a similar event. Thank you and fingers crossed for Clio’s continued remission!

  3. Isabelle says:

    Thank you for writing about this so honestly and cogently. It strikes me that you are very wise to be anticipating how this will impact all of you. I hope that you will get the support you need and that you will find ways to manage the anxiety of this transition. And more than anything I hope that Clio will stay in remission!

  4. Wendy Mastronardi says:

    Yes, I will watch and wait and hope with you.

  5. This is an incredibly good post, Jane. Thank you for explaining an element of this experience that might not occur to many of us. It didn’t to me, and yet it makes sense. I can relate it a bit to everyone being excited for us when my husband returned from his deployment, not realizing how complicated and lengthy the adjustment process was going to be, and the lingering fear that he could get called up again at any time. It’s hard to get people to understand who don’t know. Thanks for giving me a glimpse into the reality of what end of Clio’s treatment means for you.

  6. Lisa @BlueRaveFinn says:

    I have no experience with anything close to this, but this makes total sense to me. Going, going, going…stop…then what? I wish you all the most relaxing years post treatment.

    I remember the first time I heard the word leukaemia. I was with a group of kids at recess. We were talking to my grade 4 teacher (who I adored) and a girl blurted out ‘I have leukaemia’. The look of shock and fear on my teachers face is forever etched into my brain. She recovered her composure fairly quickly & I don’t really remember what was said next. I didn’t ask her about it afterwards, so I kept my naïveté a while longer. I imagine treatment for leukaemia was very different in the late 70s than it is now. Anyway…I hope that wasn’t too much of a downer.

    Good luck, take care, speedy healing and all the rest.

  7. Valerie says:

    Exactly! Ruby is now 2 weeks away from the end of treatment, in the midst of her *last* steroid week , and all sorts of mixed feelings and anxiety are creeping in.

  8. Kathleen says:

    I can only imagine. Charlie had a very mild heart condition and was recently declared a “normal” heart. Yet still, if he complains of any odd ache, i wonder. I am sure you will worry. Of course you will.

    I hope those first few steps on the shore are filled with many outreaching hands to hold you steady. xoxo

  9. Debra Kassoff says:

    This is just so smart, and true. Holding you and your beautiful family in my prayers.

  10. Jane, what you describe was my experience exactly. What I hadn’t anticipated, though, was that after being side-by-side with Nadia for so long, we had to choreograph a challenging dance of separation. She had the benefit of returning to an old life. After mothering with such intensity, I was left with “Now what?” It’s 13 years later. Nadia is an actual dancer and choreographer and I have found my “what.” I wish the same for you and Clio and your whole family.

  11. Meredith Carroll says:

    I feel your anxiety quite deeply, Jane, and can only say that I hope for the very, very, very best outcome for Clio and your whole family.

  12. Ellie says:

    We’re now four months ‘off treatment’ and Im still struggling to manage my anxiety and try to find a new normal. We had an all clear chest X-ray last week – so thats good. But we have our first lot of follow up MRI and ultrasound scans in the next week and I feel so mixed up about them all. When friends ask how we’re all doing I feel myself answering ‘yeah really good’ but inside I’m screaming ‘I’m an absolute crazy person!’ Similarly to Leukaemia my son is now in remission and will need to stay that way for five years before being officially cured of his cancer. I only hope that as more months pass and more scans come back NED, the anxiety lessens. I’m so glad to see your latest post as you always manage to express what I’m feeling. It really does help to read that what I’m thinking is similar to other people in this situation. Thank you.

  13. Ewokmama says:

    I totally get this. We are already dealing with some measure of it – the last 6 months have proven super stressful for us and we have dealt with the same questions and worries that I anticipate will come again at the end of treatment (because Jack’s been on interrupted and lowered doses of chemo since August). I am hopeful that some day I can get to a place where I don’t worry that he’s headed for relapse. I think that the longer periods of time between labs and such post-treatment will help with that. I hope hope hope.

  14. Betsy R. says:

    Jane,
    What a great post. It makes total sense that you all will feel a certain level of anxiety once you’re not actively “doing something” to battle the leukemia (and being monitored so closely). I hope that you all will have an easy, calm post-treatment phase. We will wish for nothing but good news and smooth sailing for your family!

  15. April says:

    The way you explained it makes a lot of sense and I did not think of it that way. Praying this is the end of it for good and forever.

  16. Kate says:

    My dad has been recovering from liver and colon cancer for years now. All the check ups are like little bolts of “oh no, what might end up being the result this time.” Being 3,000 miles away from my parents has only added to that since I don’t see the day-to-day changes and progress. I recently likened the whole thing to being on Space Mountain. Cancer has been a constant roller coaster, but the distance has made it like I’m on a roller coaster where I can’t see which direction I’m going to go next.

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