Jane Roper

Writer. Blogger. Hater of Olives.

Cancer is the New Normal

What a difference a few days makes. The first 48 hours after we were admitted here at the Floating Hospital were absolute hell. I barely ate a thing, kept feeling like I was going to faint (I very nearly did once in the middle of the first awful, sleepless night) and cried constantly. Well, not, you know, non-stop. But, like, very frequently. Between that and almost no sleep, I looked more possum than human. My hands and feet felt tingly, and I literally couldn’t move at full speed.

I left the hospital for a few minutes on the first full day (or maybe it was the second?) to get a little air, went into a CVS to get a few things and left with a completely bizarre assortment of items: Chapstick, a crossword puzzle book (?), jelly beans (??), a copy of O Magazine, stool softener, and a gigantic bottle of Benadryl (I assumed that every night I wouldn’t be able to sleep, so I figured I’d need to knock myself out.)

Flash forward just three days: Today, I actually washed my hair (huzzah!) and — get this — put on makeup. (I know, right?!) I even went back to our house for the first time since we came here. Disorienting, but it felt good to straighten up some stuff, get a few things. The ride there and back was sort of nice, too: Yachts moored up and down the Charles River and lawn chairs along the banks, all ready for tonight’s Pops Concert and fireworks. On the way back here, I caught glimpses of the tall ships in the harbor, all decked out with flags, and saw a few fighter jets zoom by doing tricks.

In sum, I feel like the ground is back beneath my feet. I can smile again, even laugh, make jokes, find the humor in stuff.

I guess it feels like the worst is behind us (knock on wood). Clio’s gotten a CT-Scan, a bone marrow biopsy, and then yesterday, a lumbar puncture, dose of chemo into the spinal fluid, and a port put into her chest. That’ll be there for the next couple of years, and she’ll get all her medications through it and blood drawn out of it.

Yes. A couple of years. That’s been one of the biggest shocks of this whole thing: realizing just how long this is going to be a part of our lives. We’ll be here in the hospital for up to four more weeks (and that’s assuming all goes well) while Clio has her induction therapy — a veritable buffet of medications and chemotherapies with lovely names like Cytarabine and Pegaspargase and — the loveliest all — Vincristine. (Nice name for the drug that makes you lose your hair. Also, it keeps putting fucking songs from Phantom of the Opera in my head. Christine, Christine…)

And, of course, even once we leave, there will be a couple of years of medications and clinic visits and occasional inpatient procedures and potential complications. Clio won’t be able to start kindergarten in the Fall, poor kid. And the soccer that she was so looking forward to is probably out.

The good news, though, is that Clio has the most common, most treatable form of leukemia there is — ALL Pre-B — with success rates (I much prefer that to “survival rates”) upward of 90%.

We’ve also moved into some pretty sweet digs here at the hospital. We’re in the Cam Neely Bone Marrow Transplant Ward — a small, locked ward with just 4 other families, all with kids who have cancer. (Though they’re not necessarily having bone marrow transplants. We’re not, so far.)

Cam Neely —  for non-Bostonians and sports ignoramuses like me — was a big famous Bruins player, and he donated the money to create this little haven within the hospital. We’ve got a spacious room with storage cabinets, a fold-out couch, a mini fridge, nice TV and DVD player, and a view. Our room (unlike the others on the ward) is also totally decked out in Bruins logos, with framed jerseys and a hockey stick mounted on the wall. Pretty silly.

There’s also a small “parent lounge” and kitchen, private sleeping rooms for parents, a playroom, and kitchenette. The nurses are dedicated for just this ward, and I gotta say, they’re way hotter than the nurses up on the 7th floor general pediatric inpatient ward where we started out. Yes, I’m heterosexual, but that doesn’t mean I don’t know a hot (female) nurse when I see one.

Well. I’m amazed I managed to write this much at a stretch when there is so little time to sit in one place for long at all, between helping Clio eat / get to the potty / stay entertained,  talking to doctors and nurses, updating our parents, taking care of “real life” stuff, etc. etc.

I do feel, though, that writing about all this will keep me sane. And as a writer, long-time blogger and exhibitionist, apparently (though hopefully I can resist exposing myself to the hot nurses) I just can’t imagine *not* writing about it all.

Thank you again — immensely — for all the well wishes, sympathy, good juju, prayers, chants, voodoo and other forms of moral support you’ve shown me and my family.

xoxo

JR

 

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44 Comments

  1. I have found that writing about it actually helps me to get through each day. I’m mentally telling our story anyway…writing about it gives me a record of each day…I know that it will all end up a blur (and frankly, I hope my son forgets most of it) but someday I will want to look back and remember the ups and the downs. Hang in there and don’t forget to laugh and to breathe….

  2. So glad to hear all the news and the excellent success rates despite the long road ahead. You inspire me, Jane, with your positivity and humor and general good spirit. Clio is one lucky girl to have you as her mama. Sending you all my love and vibes. xoxo

  3. I’m so glad to read that your feet are back under you. Sending more good wishes your way, and hope that these comments help you keep your spirits up in those darker moments.

  4. Catherine Hurst

    July 4, 2012 at 8:41 pm

    Jane–so nice to hear you have achieved a steady state! When you wrote before that you didn’t know if you’d write any more posts, I thought (but didn’t want to say) that you would NEED to write about it–you’re a writer, that’s what you do, and part of how you will go about processing all of this. Hope Clio is staying as chipper as possible, and that Elsa is doing well too (I imagine this must be hard on her as well). Stay sane, keep writing, prayers and positive vibes winging to you from all directions!

  5. Chantal Sulkow

    July 4, 2012 at 8:46 pm

    Jane- since I read your post the other day I have been thinking about you, Clio and your family constantly. And if this makes any sense, I am not religious and I have never prayed for anyone, but I have been praying for Clio. I am so glad to read about the 90% success in treatment, and you will get through this! Though I don’t know you I feel as if I do because I have been reading your blog for years now, and I am sending all my love and positive energy your way- xoxo

  6. Jane,
    I know we haven’t even yet met in real life, but can I say how glad I was to see this post and read your words? I am glad to hear that the ground has reappeared under your feet and seems to still be capable of supporting you. That is a very good thing. I’m also glad to hear you have such nice digs. Sounds almost posh, if one can say that about any corner of a hospital. Most of all, I’m very happy about the prognosis. Despite what sounds like a very long road ahead, the promise of such a good outlook must make you feel like you have wings.

    Write when you can. Don’t worry about being an exhibitionist. Just roll with it. We’re here and happy to catch whatever updates you can throw our way. Thinking of you!

  7. Such a relief to read this today. Sometimes it feels better just to have a plan. The unknown is the most scary. What wonderful news that Clio’s condition is treatable! I’m sure she will come through it fine. Maybe if she winds up losing her hair we can start sending her cool hats.

    I agree that it feels good to write about such things. It’s a way to be in touch with difficult emotions while also maintaining a little distance which helps to see things more clearly than you might otherwise. Writing about my fears and frustrations during my husband’s deployments helped me breathe.

    Good thoughts your way, always.

  8. I have not stopped thinking about “The Worst Blog Post Ever” so I must admit that I’m relieved to have read “Cancer is the New Normal.”

    What you are experiencing sucks. There is no way else to describe it (unless you prefer to put expletives in front of “sucks” and I didn’t feel comfy dropping the F bomb in this forum – well, not yet). Writing is cathartic so please please please continue.

    “Over 90% success rate.” I’m going to remember this… and with all the love, prayers, thoughts, voodoo, and you forgot magic beans and pixie dust – the “over 90% higher” goes up. It’s amazing what support can do.

  9. Jane,

    While I’m sorry to hear that “cancer is the new normal,” I’m glad to hear that you’ve gotten some answers and have a plan of attack. It sounds like you are in great hands at the Floating, and hopefully in an environment where Clio feels comfortable (as much as possible given the circumstances).

    Personally, I have found writing about my own experience to be so cathartic – as I’m sure you will, too – and the outpouring of support really does help you stay positive. It sounds hokey, but staying positive makes a huge difference in these situations, so focus on that high cure rate and know that Clio will get better.

    Much love,

    Stephanie

  10. Relieved to read this post. After going through health challenges with my own kids, I know all too well how things become the “new normal” rather quickly. I think that is a positive sign of strength and resilience. Many thoughts and healing wishes to your entire family but especially Clio and her mama.

  11. So relieved to read this post. Relieved that your feet are back under you, and that there is a 90% success rate. That is amazing. Take care of yourself. Little Clio is so lucky to have you in her corner.

  12. I realize this isn’t about me but I’m so thankful that you are able to write about this because it makes me feel so much better to hear that you are doing better. We who only know you through the Internet feel helpless, hopeful, scared and worried for you and at least knowing that you will be checking we can feel connected. Also, you will find kindred spirits, people who have been where you are so that you can feel less alone.

    We’re all here cheering you on strong mama! Clio is so so lucky to have a family like yours along with her for this journey. I can’t believe I just said journey. Blame the Bachelorette.

  13. Catherine Hurst

    July 4, 2012 at 9:59 pm

    PS–The 90% success rate is actually higher than that because it is based on children who were treated 5 years ago–and treatment improves every year!!

  14. You and your family have been on my mind all week, and I’m so glad to read that you’ve landed in a place that feels manageable. Sending love and healing thoughts to you all.

  15. So glad to hear. You and Clio have constantly been in my thoughts.

  16. Bridget DeMarse

    July 4, 2012 at 11:28 pm

    Hi Jane, first time responder here. I used to know Alastair from a circle of musicians that played the folk-type scene in Boston from fifteen years back. I have been always in awe of your beautiful family and how much love you both have for you children. Your writing is beautiful and awesome and hopefully therapeutic. You are a strong woman. I will be following your posts closely and hopefully can help in the form of fundraising (from Upstate New York), if this experience starts to put a financial strain on your family (which these experiences usually do). Please know your family is in our thoughts. All the love in the world to you. – Bridget

  17. Oh man. I’m so sorry to hear this, but I’m glad it’s the “good” kind. I’ll keep an eye out for the Passim benefit show. Hugs to all.

  18. Ron Chowdhury

    July 5, 2012 at 2:20 am

    So glad to hear that you’re feeling better about things. I’ve been thinking about you guys constantly since I found out about this. It sounds like Clio is in good hands. If you’re going to face something like this, Boston must be one of the best places on the planet to deal with it. I’m going to be praying for you guys to get through this.

    And tell Clio that when she feels up for it, she has an open invitation to come out to California for visits to Disneyland, Legoland, the San Diego Zoo, and wherever else she’d like to go.

  19. So glad to read that you are feeling a bit better and especially that Clio’s form is so highly treatable. I know that having such a positive, strong mama by her side will help her recover quickly. Sending more prayers and positive thoughts your way.

  20. Considering the diagnosis, this is just great news.

  21. Becky Hensley

    July 5, 2012 at 8:27 am

    Jane, I’m so glad to hear both that there is a high success rate for the form that Clio has, and that you are doing better. I can only imagine what you have been going through, and I am amazed at your strength and thankful that you sound so well. You and your family are in my thoughts and prayers.

  22. Jane, I am so glad to hear that Clio has the most treatable form of leukemia and that there is such a great success rate. I am bummed that the treatment is years long but you are such a strong, loving family with support all over that you will make it through this. I am glad you are starting to settle into your new normal. With any devastation, you need to find that new normal and learn how to live in it. It takes time, it is horrific, but it does slowly get better and you will have joy. Kisses and love and prayers to Clio & Elsa and you and your husband.

  23. Jane — We are only connected remotely via Miriam Novogrodsky, who read and reviewed your book Double Time for you. I am a close writing buddy of hers, my name is Gail Doktor, and she called to tell me about your “Worst Blog Ever.” And now, because of childhood cancer.

    My family has also endured this journey that you are just beginning. Already you are making the initial transition (finding time for a little self-care, learning the language and roadmaps of this disease, translating pre-B ALL as the “best of the best” good news, given the diagnosis).

    Please know that I realize that every family’s journey through childhood cancer is very different. Even with similar diagnosis, starting points and treatment plans, your daughter’s response and experience will be unique. You will become the experts on how your daughter and your family navigate this journey.

    Part of the transition is knowing that there will be detours. And that one of the strengths of your medical team is their ability to respond to and customize treatment to Clio. Regardless of variations in how it is handled, the protocol is also designed to be flexible, yet effective, when tailored to a child’s immune system, tolerances, sensitivities, etc.

    Amazingly, in the not-so-distant future beyond the hospital, although may seem like a long way off right now, life takes on a rhythm that is quite liveable, including the extended time of outpatient treatment (2+ years). The ALL protocol is also designed to be as humane as possible, with lots of outpatient time, so that your child can be a well-rounded child in her own setting, and you can be a family living with a new reality, but LIVING.

    My family now runs a small nonprofit foundation (Bright Happy Power, my daughter’s choice of words) to help other families like yours. I’ve sent a care package to your home address. It has some books and therapeutic play items that may be helpful over the long-term.

    First up, I’ve sent you the Nancy Keene handbook about Childhood Leukemia (essential reference guide for all parents living with this reality).And since you have storms of steroid food cravings and drug-induced mood swings coming your way, some books about feelings and changes in bodies will help everyone. Plus, a book just for siblings.

    There’s also a Fabulous Book of Paper Dolls, which doesn’t require too much hand-eye coordination or energy to use, but is a good tool for exploring the changing landscape of bodies and feelings … it helps to externalize what’s happening, and safely and creatively play out the experience. Lots of therapeutic play coming your way, too, and you’ll learn what works best to help get feelings out, and give your children the language they need. (Clio’s going to have an amazingly sophisticated vocabulary very soon, and will sound like she should be teaching at Harvard.)

    I included a few other items. We have tested all the play items, and can recommend them, but some of the childrens’ books (sib book, H is for Hair Fairy, etc) are newly published since we went through treatment, so you should check them all out, see what works for you, what you’d want to set aside.

    Of course, you didn’t ask for any of this, so keep whatever works, give away or discard what you cannot use. You are the experts about your family, you determine what is safe and best for each and all of you, even in this setting.

    In some cases, we sent duplicates, so you can have one set for each twin, or keep one in a hospital/clinic bag and one at home, or whatever works for you.

    Also, if you want to reach me for any information, please call 978.273.0308 or email gaildoktor@mac.com. Your caregivers will have amazing resources for you, and please take advantage of counselors, etc.

    One last unasked-for suggestion. If people offer help, say YES. It lets them feel a bit more involved and empowered, and takes one tiny bit of strain off you. Appoint a gatekeeper, if you can, to manage contact, visits, gifts, offers of help. Perhaps let someone set up a roster of meals or specific ways that people can help you (care for a pet, do some laundry, etc). Maybe this is all in the works … probably so. Just say YES to help. You’ll need it all more than you know, and it lets you focus on what’s most important.

    We are holding all of you up to the light.

  24. Hot nurses? I thought Alistair must have written this…poor thing you ARE sleep deprived.
    Thank you for continuing to share the journey with us despite it being heartbreakingly difficult for all of you. I was sad to hear that Clio cannot begin kindergarten this fall . How is Elsa coping? Hugs
    CorinaXX

  25. Jane, thanks so much for the update. I am so relieved to hear her condition is treatable although it will be a tough road for you all, you have my prayers and many others.

  26. Hi Jane – so glad to see that you are finding some sanity for you and the rest of the family. Hang in there. This is not going to be an easy ride for any of you, but I you know you can do it. I’m so glad to hear that there are some really positive signs coming out already. I hope Clio is feeling okay with the new meds, etc. That just can’t be easy for a little kid to go through.
    Hugs
    -Ed

  27. Jane, a friend recommended your book to me (I ordered it a couple of days ago– the “Double Time” one), and then I stumbled upon your blog. I am so very sorry that you and your family have to go through this. I am also very glad that, since you do have to go through this, that you are at Tufts (I am a genetic counselor who worked there for several years before I had my twin boys who are now 4 1/2). I know that Clio and the rest of you are in very good hands there, and I am sending you positive warm fuzzies as only a fellow UU can do…

    P.S. I kind of got freaked out reading about all of our similarities (twins, UU, one parent half-Jewish, depression, valedictorian in high school. Actually, I wasn’t valedictorian, but I just wanted to pretend I was for a second).

  28. I am so glad to read that the success rates for Clio’s form of cancer are so high, I’ve been so worried since reading the news. And I’m glad that you’re feeling a bit better, now that the initial shock is wearing off. I was reading through the comments above, one of them recommended taking help when someone offers. I was thinking that maybe being a mom of twins will help you out there, since it’s the same thing people say about having twin infants. 🙂

    Also, I know this is none of my business, but you mentioned that Clio won’t be starting kindergarten in the fall. So will Elsa wait, too? Or will they now be in different grades in school? I know it’s not the first concern right now, I was just thinking about it. My twins are signed up for kindergarten this fall, too, and I know I would be bummed if I had to split them up. (No judgment implied regardless of what you guys choose, obviously you are in a bad spot and there’s no perfect answer)

  29. Good to hear. Keep on keepin’ on.

  30. I’ve thought about your family frequently over the last few days, not knowing how to offer support that isn’t totally redundant; but I guess redundancy is good in these things. I’m relieved that Clio’s diagnosis is so very treatable, and I’ll be following along, however long your journey takes until she’s cancer-free.

    I know you have many, many friends, and that’s a comfort; I know you’ll be taken care of very well; but if you should need for anything, remember that you’ve got one more over here.

  31. Hilary Levey Friedman

    July 5, 2012 at 11:58 am

    Jane, I just saw this post today. Needless to say I am thinking of you and your family and sending you all good wishes. Clio is so lucky to have an amazing mom like you!

  32. Good for you for finding a new normal and being able to make jokes. A healthy happy-as-possible mama can only benefit Clio and Elsa (who is or will be having her own extremely difficult to process emotions too). And it’s probably best for you not to completely lose your mind either. I cannot imagine what these last 5 days have been like for you, but it sounds like you are really coping in a healthy way.

    Don’t forget to ask other people for help! People love to help!

  33. Jane, I don’t believe we’ve actually ever met in person. I’m also a member of MMOTA and my girls went to the same preschool as Elsa and Clio (a year behind). I know we’ve passed each other on numerous morning drop offs. Aside from your own daughters, I’m pretty sure I live with your husband’s biggest fans.

    My thoughts have been with your family every since I read your first post about Clio on Monday. Please know there are four more people here sending nothing but positive, healthy thoughts your way. I was so happy to read this latest post and learn that Clio’s prognosis appears to be so positive. I’m always amazed by people’s inner strength and grace when faced with the most grim of circumstances and your’s is no exception.

  34. Jane,

    My thoughts, prayers, good energy and everything else there is to send your way is flying northbound.

  35. I was relieved to read this post and am amazed that you can still be such an incredible writer while going through all this. Hang in there and keep on writing. Give the girls a hug for me.

  36. I am a new reader but just had to comment on this. My best friends son had ALL when he was 3. Yes, the treatment is long – 3 years, but he is now 15 and cancer free since the first treatment when he was 3. I guess they really don’t count until you end chemo which would have made him 6. He and my daughter have grown up together and the families are tight. We live very near the hospital he went to in Atlanta so we were the refuge. Her second son was about 6 weeks old when his brother was diagnosed. Her in laws kept him alot and they would meet at our house so she could snuggle the baby. All this to say there is tons of hope. It is hard, but once on the other side and you see your child healthy and safe it is all good. I will keep your whole family in my prayers, especially Clio!

  37. Long time lurker, first time commenter. I read your piece on Babble and I just wanted to let you know that I am praying for you and your family. {hugs}

  38. Crying tears of relief for you. Now you can tell Clio and Elsa that Clio will be fine. The treatment will be rough, but she will be just fine. And you can say it with total confidence because it’s true. Xoxo.

  39. Jane,

    just wanted to say we are praying for your family. Sending you light and love.

    xo Caroline

  40. Hi Jane

    Sending you and your family my best wishes.

    My niece was diagnosed w cancer at age 2–she’s now 8 and thriving. There are some great organizations out there that have meant a lot to her and our family and I wanted to share them with you.

    http://www.campsunshine.org/
    http://www.goteamimpact.org/

    And this was a really sweet thing that helped us get through treatments–they made an original song for her:
    http://www.songsoflove.org/

    Take care,
    Grace

  41. So glad to hear there’s a treatment with a high success rate … and still so sorry for all you’re going through. Sending thoughts & prayers your way.

  42. Best of luck. If you need transplant ,compare volumes and success rates with DFCI. Not that you need advice from strangers, but knowing the field, I recommend you do the comparison. stay strong, and take care of yourself.

  43. Hang in there sweetie. I know it is hard, but keep faith alive and I believe God and your family and friends will get you through this. I am glad it sounds like you guys are well taken care of.

  44. Hooray for Cam Neeley! And for showering! And for a 90% success rate!

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