366 Days with Leukemia

Shuffling along towards the finish line

Tag: leukemia

April 2, 2012: just the facts

I have sat down to write a blog post almost every day this week. I have the drafts to prove it, sitting on my computer, languishing. I’m not sure what the hold up is here. Even now, I keep glancing at my phone, checking Facebook, recording calories in my calorie counter (lame, I know), playing online pictionary. I’m doing everything possible to avoid writing – an activity which usually brings me such peace and a sense of accomplishment. My brain is humming with activity, but, like my blog posts, I feel a bit like I’m languishing. Languish: To fail to make progress or be successful.

I’ll start with facts and if that’s all I can muster, then at least the facts are there. We were discharged a week ago after five days inpatient. It was actually a pretty painless admission – as painless as spending five days cooped up in the hospital with a two-year-old can be. Since we’ve been home, Elsa has emerged again from the fog of this last chemo cycle (Interim Maintenance II) and she has been delightful. That’s the word I always use to describe her when the chemo has finally leached out of her body – and it’s totally accurate. Once again, she let’s us know that there is a sweet, funny, smart little girl in there – stifled by eight months of chemo and clinic and pain. She’s still my Elsa, so she will always be a bit on the ornery side. And she’s still TWO years old – so pack a little more ornery in there. But, delightful? Delightful is totally accurate.

See? Proof:

IMG_1826

Oh! And another fact: We got some really great news on our clinic visit before last. I can’t believe it’s taken me so long to share this! Originally, I had always thought that the Maintenance phase of treatment would last two years from the day we started maintenance. I had calculated that we would be done April 2, 2014. Well, while Dr. Parikh was busying himself with spinal needles and sterile gloves and Jeannie was busy charting and double-checking chemo dosages, I mentioned that April 2014 off-treatment date. They both stopped for a moment and said, “No, No. She’s finished with treatment 2 years after the start of Interim Maintenance I. Didn’t we give you your off-treatment date?” Um. No!! Jeannie glanced at Elsa’s chart and handed us a little slip of paper:

October 10, 2013

October 10, 2013!!!!

October 10, 2013!!!!

That may seem like it’s still a long time away but it is seven months shorter than I had previously thought. Two fewer spinal taps. Seven fewer IV chemos. Approximately 238 fewer chemo pills at home. This is a BIG deal! Our life (really, MY life, in particular), is very much on hold until Elsa finishes all this nonsense. Every time I try to think of anything happening in my future, whether it be a career move, going back to school, having another baby (what!?), I stop myself. Just the thought of another inpatient admission (surely, we will have another one before treatment is finished) and all my personal dreams go out the window. I can’t hold a steady job when I’m needed 24 hours a day to push an IV pole. It doesn’t make sense to spend money on the grad school that I so desperately crave. Can you imagine having a tiny infant to take care of (not to mention TWO children to breastfeed) while living on the 8th floor of our hospital?

Please, please, don’t interpret this as my ignorance to the fact that I am L-U-C-K-Y beyond measure to be able to stay home with Elsa. I know, every day, that I’m lucky to spend this time with her. That being said, I’ve got some ants in my pants (who says that?) to make a life plan that includes just a little bit more for me and my soul.

******************************

I wrote most of all this yesterday (Sunday) but now it is Monday and I’ve got more news, however tedious it may be to hear about blood counts. We were scheduled to start maintenance today but Elsa’s counts were way too low. They sent us home to enjoy another week of chemo vacation. Thankfully, this doesn’t affect our OCTOBER 10, 2013 end date (every time I say that date in my head, it’s like I’m screaming). Just less chemo overall, and I’m pretty sure Elsa’s body is down with that plan. Her ANC is only 264, so we are back on house arrest. She needs to hit 750 before we can even think about maintenance. We spoke with another family at clinic whose little girl is now done with treatment and they confirmed that their daughter’s counts took three weeks of chemo vacation to recover enough to start maintenance. Dr. Parikh told me, “Nothing to worry about,” – so as much as I’d love to worry my ass off about it, I’m going to put some blinders on and take his advice.

There we go. Blog post done. Just a little less languishing on my part.

February 4, 2012: Recycling Day

I can’t decide if keeping track of our life in days is relevant any longer.  We passed the 6 month/Day 180 mark without even a nod. I looked back at my calendar to see what we did on Day 180 and all it says is “Recycling.” I think we did, in fact, put out the recyclables that day. I wish I could climb through a wormhole to 6pm on July 20th and whisper to my crumbled, shaking self,”Six months from now, the most exciting thing that will happen in your day is that you will take out the recyclables. Shhhhh. She will be alive in your arms in six months. The day will be so boring that you won’t even realize you have six months under your belt.”

I look back at myself – my old self that existed before July 20th. I look at pictures from our old life and they are not real. We never existed in that place without leukemia. Those 17 months were a dream and I’m not sure that I was ever that mom. There I am, sitting on the bed, brushing Elsa’s sweet straggly hair and sniffing the crook of her neck. Here, let me try that wormhole again: “Stop!” I yell. “She’s sick! She is going to be so sick!”

I don’t just try to move back in time, either. When I’m not gazing at photos of my old self, I’m desperately trying to peer around the corner, into the future. I’m horrified at the thought of being caught so unawares again. If I adequately prepare myself for every possible outcome, then my future self will never have to look back morbidly on my old self and say, “Poor girl. She never knew what was coming.”

Six months in and all I’ve got to show for it is an obsession with wormholes. No, No. We have so much more to show for it. That’s just not fair to say.

Now, I feel like I need to valiantly defend myself here against an onslaught of criticism (which, by the way, I realize is, largely, in my own head).  I know I’m supposed to live in the moment. That’s what cancer does: It wakes you up every morning, hammering your brain with a litany of, “Enjoy this day because I could take it away any moment, ya know.” I realize that I cannot dwell on our past or all the unknown possibilities in our future. I also know that I’m not supposed to get caught up in the stories of other, sicker children. Truly, it is unfair to those children and their families for me to waste our good fortune. I know! I am drowning in the guilt that comes with this knowledge. I know. I know. I know.

It’s just that, while I’m sniffing her sweet fuzzy head, I’m always keeping a look-out for any sinister goings-on in there. I’m always half expecting my future self to materialize, wide-eyed in front of me, whispering urgently, “Stop! Look! Hold her tighter while you can.”   I want to ask my future self if we will get out of this unscathed.  Will we get to keep her? Five years from now, will my greatest concern be that J take out the recyclables the night before so that we don’t miss the truck?

Back through the wormhole she goes. Questions unanswered.

_____________________________

Ugh! Why does this always happen? I, truly, intended to log on and type the following:

Hi friends! No news is good news! This week has been wonderful and we are greatly enjoying our chemo vacation. The worst news we have to report is that Elsa is two-years old and, thus, driving us totally insane with normal two-year old stuff.

Instead, I started rifling through old, unfinished posts and found the one above. I remember when I originally wrote those ideas, some months ago, I had run it by J before publishing (which I rarely do). His reply was, “All that talk of your different selves sounds confusing,” so I abandoned it for awhile. Today, I got lost in those old thoughts and ended up writing a significantly more melancholy update than I had originally intended.

See, I’ll prove it to you. Look at us this week; It was great!

January 21, 2012: ER update

Earlier tonight, we thought Elsa had a fever but it turned out J’s parents had read the thermometer wrong and we were happy to return home to our beds. We should have just gone to the ER then because now, it’s 2:19 in the morning and we are on our way to the ER with a fever of 101.7 and an ANC of 72. Also, the room they had ready for us earlier tonight on the 8th floor has since been given away and the floor is now full. Unfortunately, J and I are both sick as well, so we are quite the sad sack of a family right now. We’re going to be in for the long haul. . . Can’t leave the hospital until her ANC is over 200 and that could be a week, at least. Wish us luck and boredom. We like malignant boredom to be our biggest problem.

January 18, 2012: Clinic Roundup

We have had two incredibly long clinic days yesterday and last Monday. I hesitate to blame the hospital bureaucratic snafus because, if they happen every clinic visit, then I think they might not be actual snafus. As a nurse, I should know better, really. “Hospital Time” is 2-4 hours delayed past all your expectations and often, there is no reasonable explanation. Time gets sucked down the drain in tiny, imperceptible droplets until suddenly, you realize it’s dark outside and you need to order a dinner tray.

A week ago, Elsa’s counts were finally high enough to start the second half of Delayed Intensification (ANC 860). That day was 13 hours long due to a three-hour delay in the pharmacy making the kids’ chemos. The whole clinic was in chaos because of the delay, but Elsa actually sailed through quite pleasantly. Not to pat myself on the back too heartily, but I was impressed with her fortitude AND my own. We were a really great team all day, even in the face of her not being able to eat, drink, or nurse for 8 hours (in preparation for her spinal tap, which was then delayed). I was proud of us.

We have a schedule of activities that we put on repeat for these long days. All these activities are made just a little more interesting by the IV pole and short length of IV tubing that reaches from the pole to the port in Elsa’s chest. We are a clumsy, bumbling trio: Elsa, Mom, and the IV pole. So here’s the schedule:

Go visit the receptionists, Amy, Ruby, and Karen and play peek-a-boo. Check out the toys on the receptionists’ desks, which are always themed to the appropriate holiday. Go flip the switch for the choo-choo train that runs along a track on the ceiling. Smile, laugh, and exclaim enthusiastically when the train appears around the corner. Get bored of the train and head down the hallway and around the corner to the four seasonal paintings of trees. Find the tiny bunny in the Spring Tree painting and exclaim enthusiastically, “There’s our tiny, tiny bunny!” Tire quickly of these paintings. Check out what the other kids are doing in the exam rooms and see if anyone will invite us in for a visit. Head back to the waiting room and play with a few boxes of plastic figurines. Find all the plastic dogs and line them up. Now, knock them down. Say they are going “nigh nigh” and put “blankies” (little ripped bits of paper towels) on them. Wake up the doggies and exclaim enthusiastically, “Good morning doggies!” Knock them down again. Repeat until bored. Head to the DVD cabinet and remove, at least, 20 DVDS and then put them back. Walk down the hallway past the infusion rooms and see if anyone wants to invite us in for a play date. Return to our room and read books on the bed. Watch 10 minutes of a DVD of nursery rhymes with totally horrifying animation. The only movie that holds her attention is, of course, the most intolerable one for me. Watch until bored. Take off clothes (Elsa’s clothes, not mine!), sit on the counter next to the sink and fill the sink with no less than 37 paper towels, saturated in hand soap. Wait until Elsa’s feet are shriveled little prunes and she is ready to get down (which can take up to 45 minutes – Score!) Diaper change. Clothing change. Go visit the receptionists Amy, Ruby, and Karen . . . . .

After the third repeat of this cycle, it is just about as mind-numbing as it sounds. Then again, some of our leukemia acquaintances are currently experiencing some really tragic stuff. Awful, awful. We are acutely aware that mind-numbing boredom during a 13 hour clinic day . . . we’ll take it with a smile and a nod and a thank-you. We’ll take it and ask for more please. Boredom is good.

******************************************

Photos from our 13 hour clinic day on January 9th, 2012

Our trusty pump:

IMG_1240

Our trusty paper towel dispenser:

IMG_1241

Our trusty soap dispenser:

IMG_1238

A highly coveted nap!

IMG_1236

Getting ready for her 9th spinal tap – she’s an old pro now:

IMG_1247

One dose of ketamine and one dose of versed later and you have this: (* I love how it looks like her doctor is performing a magic trick behind her. . . or conducting an orchestra?)

IMG_1248

Sweet little back, recovering:

IMG_1251

January 7, 2012: A happy toddler

Not much to report, which is great! We went to clinic this past Monday to start the second half of delayed intensification, but Elsa’s counts were way too low (ANC 400), so we got to go home and take the week off (she needs to be 750 to get chemo). While I, initially, felt a twinge of disappointment that we would not be getting this next phase underway, I mostly feel relief that Elsa’s body gets another week to rest before the onslaught.

She is so clearly renewed and rejuvenated. For the past few months, part of me had shamefully started to believe that, perhaps, John and I had given birth to a rotten egg. That’s an awful thing for a mother to think, I know. [I think moms need to think awful thoughts sometimes, say them out loud to a room full of people, and then let themselves off the hook.] It’s hard for me to step back sometimes (probably because we are attached to one another 24/7) and see that, of course, she is irritable because of treatment. I get mired down with this conviction that she has some sort of inborn error in her personality. She has been so incredibly irritable and clingy for the past few months; I had forgotten who my child really is.

It has been nearly three weeks since her last chemo and I am in absolute awe of the child who has returned to our house. She is delightful! We have a delightful child! She goes to bed at a semi-reasonable hour (albeit with an hours worth of fanfare). She sleeps [almost] through the night. She wakes up and doesn’t immediately start screaming. I had started to think that immediate hysteria, upon waking, was just a normal part of being a kid. Turns out that kids who feel good? Yeah, apparently they don’t need to always wake up screaming. Also, for months now, she has been totally incapable of amusing herself for even 60 seconds. She needs to be CONSTANTLY engaged with someone (usually me) and whines incessantly if left to her own devices.

The other night, John and I sat in the living room for an hour while Elsa toddled around the house, playing with her various toys, occasionally bringing them to us and shoving them in our face for us to “eat.” She was happy to just play. No screaming for “na na” (nursing), no whining while clinging to my legs, no wild demands for a schmorgesbord of salty snacks. We were just hanging out together, as a family. The adults doing their own thing, mama feeling free and disentangled, the baby doing her own thing, and the occasional happy collisions of family members: J and I chatting. Me eating Elsa’s play food. J tickling her belly. I said to J, “I think this is what it is supposed to be like to have a kid . . .” and we both just sat, stunned.

I have a problem with my inner monologue (hence, the need for writing). My inner monologue is repetitious – I think J, with all his psychiatric wisdom, would say I am very perseverative. I have phrases that run through my head all day (and night) – they are particularly intense when I’m driving. Many of them are directed at Elsa and one, in particular is, “My god. What have they done to you?” These past few days, I’ve felt this phrase so acutely as she blossoms into a happy little girl. My god. What have they done to you? How could we have lost you for so long, that I had started to believe that you never existed?

All that and I could have just said, “We are having a great week!”

December 15, 2011 I got fever all through the night

I’m typing on my iphone, so this is just the facts. Made it through our first visit to the ER. That’s got to be some sort of cancer family milestone. Elsa ran a fever of 101.3 last night so we packed up and headed to CCMC prepared for an admission. Thankfully, her ANC was above 1000 so they sent us home to watch and wait. She was great for all the procedures and spent most of the time looking wiped out on the stretcher. Fingers crossed that her blood cultures don’t grow anything and we are fever free as the day goes on.

20111215-062428.jpg

October 31, 2011: Interim Maintenance #1

Interim Maintenance #1 is turning out to be just as boring as it sounds. And boring is good. This past week’s clinic visit was a breeze and a welcome distraction from the crazy snowpocalypse that has totally devastated the state. We were without power for five days, but thanks to Grampy and Nona (and their generator and wood stove!), we were none the wiser. Warm, well-fed, cozy.

Like I said, no complaints about clinic this week. There was warm coffee, heat and our usual friendly faces. Plus, the new clinic opened this past Monday, so we got to be part of the inaugural group of patients getting chemo in what must be the world’s fanciest pediatric oncology clinic. Seriously, we’ve got wall to wall windows, TV’s and play stations in every room, a choo-choo train that runs on a track along the ceiling, heated massage chairs for getting chemo (I know!), fancy coffee makers, a family kitchen . . . the list goes on!

I don’t know how it is Day 107 already. Just 805 days left. Wow. That’s not even worth looking at. Let’s just say we have 107 days under our belt and that is something that can make us feel proud and accomplished.

For lack of better, more interesting words, let’s just get on with the pictures!

10/31/11

Getting chemo is easy in my heated massage chair! Chocolate ice cream on my face helps too.

All set with my mom and my trusty pump.

September 23, 2011: Blah

Updates have been slim this week since I have been feeling a bit “blah.” I am happy to report that Elsa is doing well, though. In good spirits, running around, tormenting the dog. The usual.

When we walked into the hospital this past Monday for our weekly clinic visit, my heart sank. I just wanted to scream, “I’m done now! Enough!” During our first week in the hospital, our Leukemia 101 professors kept reminding us that leukemia treatment is a marathon and not a sprint. I think that, for the first time, I’m really starting to feel the weight of that statement. I’m at mile 2 and already my muscles are burning.

***************

Took a break. Went grocery shopping. I’d like to be able to say that I’m feeling renewed, but I think I’m feeling worse.

I’m not sure why I did this, but I googled “Leukemia blog.” Why google? Why do I do this to myself? The first two that I clicked on were both written by or about people who have died. The second one was actually about a girl diagnosed at age 22 months and then in remission for 7 years. Mysteriously, she relapsed at age 11. Died. In a lot of her pictures, her head is laying on the same Ikea pillowcase that J and I have on our bed. Were I in a better mood, I would put my blinders on and continue with my day, repeatedly telling myself, “She’ll be fine. She’ll be fine.” Instead, I just feel awful, like that pillowcase was a terrible omen. Today, Elsa feels like a ticking time bomb, wrapped in this happy, smiling, toddler costume.

Children die from this. They spend time in the ICU, hooked up to machines and tubes. I just can’t. Can’t. Can’t. Think about that for Elsa. I can’t. I honestly haven’t felt like this since early in her treatment. Hopeless and afraid and unable to push these awful thoughts out of my head.

I know this will pass. These feelings.

***************

Took another break. 24 hours passed. Time spent. Feeling honestly better today. Still sad, but now allowing myself to pursue any more google searches. I’m heading to Philadelphia for the night – for a close friend’s secret wedding reception. I didn’t think I would be able to go, but I’m forcing myself – I would regret staying home. There couldn’t be a better time for me to leave, really. She is tolerating consolidation so well. All of her side effects from the Day 1 dose of vincristine (pain, change in taste resulting in no appetite, constipation) have passed. She is sleeping through the night for the time being.

***************

More hours have passed. This is what it is like trying to write a blog post with a 19 month old in the house. On my way to Philly. Nervous, but excited to be fancy free for approximately 22 hours. Putting away whatever dark feelings I have. Telling myself that all will be well while I’m away.

August 2, 2011: Wild Geese

A little girl’s body dredged from a pond. An autopsy. That would be worse.

A young boy who needs another surgery. On his other lung, his good lung. His parents trying to decide when to tell him that he will need to go under the knife. For the 11th time. That would be worse.

A little girl whose parents divorced four months before her diagnosis. Whose father says cancer has been a “blessing,” because now he gets to actually see his little girl. Her parents sit in the playroom, occasionally managing to break their stony silence with tired half-smiles for their daughter. That would be worse.

A little black baby with hearing aids and thinning hair. Moon face and pot belly that give us a glimpse of what steroids will do to you. What steroids are doing to you already. A little black baby who doesn’t have anyone who loves him enough to sacrifice and stay with him. Whose mother is perhaps too young? A child herself? A little black baby dropped off at the hospital for his chemo and left for days. Held and bounced by young white nurses. His diaper changed by young white nurses as they chat about the party they went to last night, the wedding they are planning, the new car they might buy. That would be worse.

Twice now,  we have gone to the river with you. Twice since our “new” life started. While walking, we look out over the bridge at the Farmington River I grew up on.  Each time, I’ve been surprised: The river, it’s still there. And the trees. The current pulls and there are spiders in the branches. Ducks paddling with tiny ducks trailing behind.

Our life has shifted forever. Our baby is sick. I am so incredibly tired. Walking along the river, I feel like I am engulfed in a dark poisonous bubble, sharply demarcated from the world around me. A world which is, amazingly, exactly the same. The river seems not to have noticed the change in our life.

I found this Mary Oliver poem. I couldn’t believe it existed and that I would stumble upon it just now. Just more proof that our life is not so special.  That what I’m feeling is universal. That the river and the trees do not take note of sick children.

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting–
over and over announcing your place
in the family of things.

July 23, 2011: the day after surgery

With your Nona in the play room:
7/23/11

Back when you still liked chocolate pudding:
7/23/11

All I can see in the next picture is the lingering stigmata of those 7 failed IV start attempts from the night you were diagnosed. Of all the things that they’ve done to you along the way, I will always feel the most guilty for not having stopped them that night. I should have said, “No, you can’t stick any more needles in her right now. Figure out a better way.” I shouldn’t have let them hold you down so long, screaming . . . Water under the bridge, I suppose. Certainly, I know it is for you, thank goodness.
July 23, 2011

7/23/11

What’s funny about going through these old photos, almost a year later, is that all the drama and emotion has been sucked out. From these photos, July 23rd was a day full of fun, smiles, and chocolate pudding. For the sake of honesty and my own memory, this was probably the third worst day of our life, ranking just below that previous Wednesday (when they told us she has leukemia) and the day before (when she went in for surgery and her first chemo). I love these photos though, because they show my strong little baby, less than 24 hours after her first major surgery, bruised and sore, but smiling and totally hardcore.

Follow

Get every new post delivered to your Inbox.

Join 71 other followers