Living with Grief

So here it is. The final chapter of Ariella’s story. This is going to make you uncomfortable and sad and scared and probably even horrified. It will make you angry. It will not only break your heart but will shatter it into tiny pieces. And that’s the point. Because this should not happen. This should not continue to happen. Childhood cancer is not the cute bald kids on St. Jude’s commercials. It’s brutal. It’s destruction and side effects and infection and hospital stays and feeling lousy and fear and anxiety and pain and trauma and devastation and heartbreak. It’s being poked and prodded, needlesticks, surgeries transfusions, dressing changes. It’s grueling and isolating and unfair and relentless with loss of privacy and dignity. Sure, Ariella smiled during treatment. She had some great times, we made sure of that. But she also screamed in pain that pain meds couldn’t touch. She carried a puke bucket with her all the time. She asked questions like, what if this treatment doesn’t work? She rarely made it through a full day of school. She had excruciating headaches. She was scared and lonely and missed out on so much. The treatment ravaged her body. And this was all before she ended up in the PICU.

Ariella’s story left off in the middle of relapse treatment, in September 2018. Ariella had started middle school and loved it. She was back to dancing and learning a tap solo. The first treatment protocol for relapse did not work. Meds were switched. All outpatient. Treatment this time around was not as disruptive. But the new meds required injections again to boost her counts. She turned 11 and had her birthday party at an indoor skydiving place. Fearless that kid was. We went to New York to see School of Rock with the Do it For the Love Foundation. She got to meet the cast and get a backstage tour! She took part in Hockey Fights Cancer and skated with Phoenix Copley and other Caps. She delivered tons of bears to local hospitals and respite houses. She was living her life, cancer be damned. She started radiation in November 2018. The goal was local control to get her NED (no evidence of disease) so she could get the bone marrow transplant. In the beginning of December we learned that the current chemo regiment also was not working. So once again we had to come up with a new plan. There was still an option but if this didn’t work… Rather than chemo it was Pazopanib which was a targeted therapy. When I had to tell her once again that the chemo wasn’t working but that there was another med we were going to try, she said “well at least I have options.” And the new med was much easier. It was an oral pill taken daily with fewer side effects though it turned her hair white which she loved and totally rocked. She continued with radiation and experienced horrible nausea throughout that treatment. But through it all she was thriving at school and continuing to kick ass on the dance floor. She finished with the radiation in January 2013 and we finally got the news we wanted. We couldn’t say she was cancer free because there was the strong likelihood that there were still micro-metastatic cells, but there was no new disease and no metabolic activity in any of her lesions. This was everything we hoped for. We could do the bone marrow transplant (a trial in sarcoma patients) and hopefully get rid of this disease once and for all. All of a sudden things were moving quickly with admission scheduled for the week of February 18 and transplant scheduled for the 26th. The timing sucked for Ariella. She was gearing up for dance competition season. Missing competing for 2 years Ariella was thrilled to be back at it. And she was working so hard. But we told her it would be worth it to miss one more season in order to be able to dance for years to come… She was fortunate in that a competition that was going to be held locally allowed late entries from her dance studio so Ariella got to perform in a couple of group dances and her tap solo. We never could have imagined it would have been her last time dancing. Ever. What if? What if the timing was different? What if we asked her doctors to delay until after competition season? What if, what if, what if?

So here we are. Ariella started her relapse protocol in June. It consists of 3 different meds, 5 days on and 2 weeks off. All outpatient, mostly oral requiring mostly only weekly clinic visits. She has completed 4 rounds so far. After the 2nd round the chest x-ray showed a decrease in the size of the lung lesion that showed up on the initial x-ray with no new lesions visible. Next up will be a PET scan. Once we figured out how to manage her nausea she has tolerated it pretty well. The worst side effect is probably diarrhea which can cause her some anxiety depending on where she is. She gets an icky taste in her mouth on chemo weeks and gets pretty achy just after chemo week likely due to the steroid she’s on during chemo. She gets fatigued but mostly she’s been able to do most things, even starting middle school right in the middle of a round of chemo. We had to cancel our Myrtle Beach trip but were able to go to Disney, LA, and Ocean City. Ariella’s biggest disappointment was that she couldn’t go to sleep away camp. This treatment is currently much less disruptive which is great. Her blood counts stay pretty close to normal so we don’t have to worry as much about being in crowded places and whatnot so we can continue to try to live as normally as possible.

In a few weeks or so Ariella will begin lung radiation. She also will have radiation to her sacrum as there were “irregularities” on the initial PET and MRI. Lung radiation will be about 2 weeks, 5 days a week and sacrum will be 5 1/2 to 6 weeks. That may be concurrent with the lung radiation depending on how she does. She will continue to get chemo during radiation.

If after 6-8 weeks after radiation she is showing stable disease she will then have a bone marrow transplant from David or me. We are both candidates but David will more likely be the donor because of blood type. The idea is that the new bone marrow will fight any remaining cancer cells since Ariella’s obviously doesn’t. This will be combined with a medicine that will hopefully boost the new immune system. The bone marrow transplant will be at Hopkins.

In the meantime we will continue living our lives. Ariella loves her new school (yay)! She doesn’t want to miss any because she thinks the classes are very interesting and loves the way the teachers teach. The dance season is starting so even though competition is again unlikely due to timing of things, she gets to actually dance again. We will be at CureFest next weekend and she will turn 11 in October. So more things to look forward to. Radiation and BMT will be much more disruptive but we will cross those bridges when we come to them. Thanks so much to everyone who has supported us to date and continues to do so. Thank you to Karen Sachs Academy of Dance Ariella’s 2nd family. She always had the studio to go to.

Thank you to everyone who read her story. And especially to those who shared it. Awareness really is important to get the funding needed for research. Because it could be any child. Childhood cancer is very uncomfortable but very real and it’s time for a cure. We need to talk about it, not look away. I wasn’t a cancer parent either, never thought I would be, until I was. Please share and spread the awareness. #AriellaStrong #PediatricCancerAwareness #MoreThan4 #ItsNotRare #GoldStrong

I have shared Ariella’s story through the end of her treatment. But as you all know, the story doesn’t end there. Ariella finished treatment in December 2017, rang the bell, had her central line removed in January 2018 and returned to school. It was a bit of an adjustment at first but she settled in. We had a lot to look forward to, a trip to LA in April, a weekend in Ocean City in April, a trip to Myrtle Beach, our wish trip to Disney, 3 weeks at sleepover camp, and then later on another trip to LA and a week in Ocean City. We had 3 months where we could just focus on the now but it was hard to get excited for anything knowing that the upcoming scans would dictate what we would and would not be doing. Her first set of off-treatment scans was in March and they were clear. We knew we would be able to go to LA and Ocean City. Ariella returned to the dance studio even with the ex-fix on her leg and began working on her dance skills. We went to LA with Dancers against Cancer and then went to Ocean City with Believe in Tomorrow. Ariella went to her dance company’s competitions, had sleepovers with friends, and was winding down the school year. We still had a lot to look forward to but it was hard to get excited again knowing scans were once again looming. Ariella was preparing to dance a small part in her dance recital. Leading up to recital she rehearsed with her friends. The day of recital was also the day of her chest X-ray.

On June 1, 2018 in the morning she had her x-ray and by 11:00 we got the news that the x-ray showed a 2 cm lesion on her lung. She had been dropped off at school after the x-ray and we had to then pick her back up and take her for a CT scan to get further information. At the time we just told her that the doctor needed more info. While waiting for CT results we took her back to school and waited for the phone call. It came not long after with the dreaded news that she had multiple lesions on each lung that appeared to be cancer. I don’t remember much about that phone call, I just remember screaming and crying and dropping to the floor. How? How could this be happening, again? We barely had 6 months of “normalcy”. How were we going to do it all again? We just went through hell and were still recovering. Our world was shattered again. How were we going to tell Ariella? Telling Ariella the cancer came back was more awful that you can imagine. She cried for a while but then said she still wanted to dance in the recital. She danced that night and twice the next day. She slept over a friend’s house. Even though I wanted her with me she needed her friend.

The next couple of weeks were again filled with more scans and biopsies. She did manage to finish the school year (5th grade had their closing ceremony a week prior to the actual end of school). We met with our doctor to discuss treatment plan. We looked at trials and studies and consulted with a renowned doctor in Cleveland. On June 6, 2018 Ariella had her fixator removed and a full leg cast placed. On June 13, 2018 (one year to the day she had her tumor removed) Ariella had a biopsy on her lung (once again requiring her to have a chest tube) and had her port placed. The port was new for Ariella. Previously she had the Hickman catheter, but the port made more sense for this treatment protocol. So no weekly dressing changes, but being poked every time she needs to be accessed. She handled port placement and chest tube like a champ and was out of the hospital after a couple days, in time to throw out the first pitch in a Bowie Baysox game that Sunday. And then we began gearing up to start the battle once again.

Ariella’s story continued… On June 13, 2017 Ariella had her limb salvage surgery on her leg. This consisted of the orthopedic oncologist removing ~4″ of her tibia, the tumor along with it. Then a surgeon who specializes in limb lengthening and limb deformities placed an external fixator on her leg. The hope was that since broken bones heal themselves, her body would form new bone to fix the break. The external fixator helped the process along by actually moving the remaining bone down millimeters at a time to lessen the gap (there was a cut made at the top of the remaining bone so we were actually filling 2 gaps). This would allow Ariella to have her own bone rather than a cadaver bone or rod implant. And it worked! It took a long, long time (longer than I think the surgeon expected because he wasn’t used to dealing with patients on chemo) due to the chemo but once she was off the chemo the bone formed more quickly. Following a (very painful) bone graft in May 2018 Ariella finally had the fixator removed on June 6, 2018 (she had it for 51 weeks). She went to a full leg cast for a couple of weeks, then a boot for several weeks and now has nothing on her leg and walking without a mobility device and even dancing! She was in PT 2-3 times per week that entire time and continues to go to PT to build up her strength and range of motion. The leg has come a very long way though.

While in the hospital recovering from surgery Ariella developed a fever which ended up being an infection in her central line. The central line had to be removed, and then replaced, again puncturing her lung again requiring a chest tube. She was devastated when she realized she would need a chest tube again. She spent much of that summer in the hospital and chemo was delayed, but she did get back on track. However she had 11 rounds to go of mostly the same protocol and her body was taking longer to recover, leading to delays between rounds. She required multiple blood and platelet transfusions and we never knew when she would be admitted for chemo. It was a long road but there was an end in sight. Somehow we made it to the end of treatment with a couple fevers and ER visits in between but nothing too significant. Ariella rang the end of treatment bell in December when scans showed NED, she had her central line removed in January 2018 and she went back to school. I wish I could say this was the end of her journey, but those who follow her page know this is not the case. We had less than 6 months of “normalcy” before our world was rocked again.

I will always wonder, what if they had amputated her leg instead? Would that have gotten rid of all the little microcells and thus prevented relapse? The margins were clean after surgery but still I wonder.

Also to add to the story, the pathology report of the tumor wasn’t what we wanted. It was only 65% necrotic (you want greater than 95%) but there was nothing they do to change the first treatment plan even though the chemo wasn’t doing the job. Had I known more I would have pushed for some kind of maintenance or consulted with another doctor after she finished that treatment. Maybe they would have said the same, there’s nothing to do. Maybe not. But of course I What If that to death. It didn’t make sense. She should have had the best prognosis based on her age, tumor location, that it was localized, and that she was a girl. But statistics mean nothing when it comes to cancer.

When chemo finally started it was actually kind of anti-climactic. Ariella had been in the hospital a while already with the chest tube and hooked up to tubes and fluids so starting chemo was just a matter of hanging a different bag on the IV. But it didn’t take long for her to feel the side effects. She experienced nausea and vomiting and also a very severe headache when getting one of the chemo medicines. Ariella’s chemo protocol was 5 different chemo medicines, alternating between 2 and 5 day cycles. All of her chemo was inpatient (except a push of one of the meds into her IV a week following the 2 day round, in clinic) requiring inpatient stays every 2 weeks (either 2 nights in the hospital or 5 nights in the hospital, depending on which round she was on). Each round started 2 weeks after the 1st day of the previous so after those 5 day rounds she had only a little more than a week before starting the next. With each round her white blood counts dropped to 0 so she as was serious risk for infection. So going to school was out of the question. She had home/hospital schooling 3 times per week, even when she was in the hospital. By the time her counts recovered it was time for the next round of chemo. Following each round we had to give her injections daily to boost her counts for her next round of chemo. Those injections were a major source of stress and anxiety. Lots of crying and screaming and begging us not to do it. We eventually settled into a good routine with the injections but it was never easy for any of us. And they hurt. Even if the initial prick didn’t hurt so much, the medicine going in hurt her a lot. She described it as “burning.”

Ariella ran the gamut of side-effects. It took several rounds but her nausea was eventually pretty well managed. One of the medicines added to her anti-nausea regimen was Ativan which mostly helped. However at one point the nausea was really bad so they upped the Ativan dose. Ariella did not react well to that. She started hallucinating and was screaming and crying and making very little sense. There was nothing we could do but try to keep her calm and wait for the effects to wear off. Other side effects were fatigue, neuropathy (pain and tingling in her legs which was managed with Vitamin B and Gabapentin), mouth sores (thankfully only once during the entire treatment), headaches, and just generally not feeling good. Part of her protocol was taking glutamine powder 3 times/day which has been shown to prevent mouth sores. Ariella tried mixing with various drinks but no matter what had a hard time getting it down. She didn’t always keep it down either. Eventually we discovered that hot chocolate worked the best but unfortunately that ruined hot chocolate for her. She also no longer liked mint and other foods tasted weird to her. Her appetite was up and down but she did start gaining back the weight she had lost. Ariella had a Hickman catheter in which to administer the chemo. It meant she didn’t have to get stuck with a needle all the time but it also meant weekly dressing changes which were quite painful for her. It took a long, long time but eventually we found a dressing that was much easier to remove but boy did she dread those changes.

Ariella made it through the first 6 rounds of chemo without delays due to counts. This was not the case later on in treatment. She did require a few blood transfusions which was to be expected. After the first round we ended up in the hospital for a fever. Fevers are not something that can be ignored. Anything above 100.4 requires a call to the clinic and likely blood cultures to determine possible infections. If she was neutropenic (pretty much always between rounds of chemo) fevers meant admission to the hospital for IV antibiotics and because the immune system cannot fight off the infection. If fevers occurred outside clinic hours, a trip to the ER was required. We had several ER visits throughout the course of treatment. Prior to the end of those first 6 rounds of chemo we began discussing surgical options with the orthopedic oncologist. Surgery was to occur after those initial 6 rounds of chemo.

Ariella’s story, continued. You hear stories of people seeing a doctor for some symptom or another, and are immediately admitted to have port placed and start chemo. This wasn’t the case for Ariella. She went to the doctor at the end of January 2017 for symptoms and though it was pretty clear she had a tumor, official diagnosis didn’t come until near the end of February. We were going crazy, worrying about the cancer spreading while waiting for the diagnosis but they can’t just start treatment. All cancers are treated differently so we had to wait to make sure they used the correct protocol. In the meantime, prior to taking her in for her leg pain, Ariella was losing a crazy amount of weight and we couldn’t figure out why. Blood work didn’t show anything and we had scheduled an appointment with a GI doctor. However she had her MRI on the leg prior to the GI appointment and finally the weight loss was explained.

After official diagnosis things did move a bit more quickly. Ariella is a dancer and at that time she was working on a tap solo. Unfortunately she was no longer able to dance but we allowed her to perform the solo one time, at her dance studio’s showcase. The week after that her official diagnosis came and we met with the team at Sinai. We received an overwhelming amount of information and scheduled more scans and biopsies. After that Ariella decided she wanted to go to the dance studio to be with her other family.

Scans and biopsies determined the cancer had not spread and she was admitted to have her central line placed and start chemo. We were ready to fight this thing. However when the line was placed her lung was punctured requiring a chest tube. The chest tube was incredible painful and Ariella could barely move. There was excruciating pain when they were trying to unkink the chest tube at one point and ultimately they had to replace the 1st chest tube with a second larger one. We couldn’t start chemo until the lung healed and the chest tube was out and that took close to a week with Ariella in significant pain that whole time. Finally the tube came out and chemo started.

I wrote these on Facebook in 2018 as part of Childhood Cancer Awareness Month. I am currently sharing them there again in honor of September but also just wanted to put them here to be able to easily return to them.

In honor of childhood cancer awareness month I’m going to share Ariella’s story again in parts for those new to the page and to hopefully raise more awareness. We weren’t even aware of all the awareness initiatives, advocates and groups until nearing the end of treatment.

So here’s her story, part 1. Ariella had been complaining of leg pain in fall 2016. She’s a dancer so we didn’t think much of it. When she rested it, it got better. At one point we did have it x-rayed which showed a contusion, but we were just told to have her rest it and if it didn’t improve, see an orthopedic surgeon. It did improve, for a while. By January 2017 it was hurting much more, red and swollen. We took her to the orthopedist who x-rayed and then immediately sent us for an MRI. Not 20 minutes after leaving the MRI place we get a call from the doctor referring us to an orthopedic oncologist. The bottom dropped out. We were completely floored. Cancer was not even remotely on our radar. How could this be? It was a dance injury! This was the beginning of our life changing as we knew it. The next couple of days consisted of scans, tests and biopsies. The doctor suspected Ewing’s Sarcoma and after a couple of weeks waiting for results it was confirmed on February 25, 2017.

It’s that time of year again. End of summer. Back to school. A change in the air from the hot, muggy, summer days to the crisp, cool air of fall. Ariella’s birthday. Fall festivals, apple and pumpkin picking, lots of family activities. Was always my favorite time of year. I’ve recently written about the shift I’ve experienced in my outlook and grief, and that hasn’t changed, but that doesn’t mean the pain of losing Ariella is gone and this time of year is especially difficult for me. A time of year full of promise, new beginnings, a literal new year in the Jewish calendar is now marked by missed milestones, moments stolen from us, and always the wondering.

As each year passes I have more and more difficulty imaging what Ariella would be like at this age. She would no longer be a child and I see her friends and kids her age and it breaks my heart over and over. And it feels like I lose her again and again. I shared a post on Facebook about things one man learned when he lost his son and one of them was keeping a journal of things about the child. Funny things he said and did, and things of that nature. I had done that a little bit but I know there was so much I missed that I no longer remember. I thought we would have forever to make memories that I didn’t feel the need to record all the little moments. I didn’t think that one day that would be all I had. Who would think that? Anyway, some random things I would love to share about my girl.

• She carried a shit ton of things in her hoodie pocket, most being rocks. And sometimes she would sleep with them. There was frequently dirt in her bed from rocks. And these weren’t small, pretty, rocks. These were just big, jagged, rocks. I don’t know how she carried so much stuff. Oh and this started when she was little but she continued to do this even as an 11-year-old.
• Her favorite color was light blue but sometimes she would choose teal.
• She loved unicorns. And penguins.
• She was a prankster. She silly stringed her doctors and squirted them with water from syringes. She scared the crap out of a nurse by popping up from under the covers with a scary clown mask. One of her doctors gave her a fart machine and Ariella thought it was the greatest thing ever. After she died we found a list of pranks that she wanted to do on her friends.
• She had a list of tattoos that she wanted to get when she was old enough including a shark fin, peanut butter and jelly sandwich (this was supposed to be with a friend), a yin yang (also with a friend), an infinity sign, and I think a couple others (I do have the list, will have to check it again).
• She had a temper. She could go from zero to insane in a matter of seconds.
• She was sweet and generous and loving. She gave the best hugs.
• She was so freaking slow! When doing anything and everything!
• When she was little she called the remote a cremote, milk was gulk, a tunnel was a nunnel, and Barnes and Noble was Barnes and Narble. She said “what you said?” Instead of what did you say? And little billit instead of little bit.
• She loved photography and had a pretty good eye when composing a picture.
• She loved to make up dances and video herself.
• She was a dancer. Tap was her favorite.
• She was bossy (a leader?) but kids flocked to her. One day we were at a friends with a bunch of kids there and she had all the kids lined up behind her following her around the yard like the pied piper.
• She was the queen of eye rolling.
• She was friends with everyone and never held a grudge.
• One time she was so angry about being asked to wash her hands that kneeled on a step stool, put her head on the floor with her legs on the stool, and stayed there upside down a good while. She was definitely stubborn.
• She loved to read and still loved when we read to her. She was working her way through Harry Potter.
• She loved the beach. Ocean City was one of her favorite places. And she loved the Haunted House on the boardwalk.
• She was the furthest thing from a picky eater and she especially loved steak and sushi. She didn’t have much of a sweet tooth though she loved sour candy.
• She loved to talk. A lot.
• She was loud. Very, very, loud.
• She loved going to New York and seeing musicals. Wicked and Aladdin were her favorites. She got to see School of Rock through Do it For The Love Foundation and got to meet the cast and get a backstage tour,
• She loved volunteering at the Human Society. She got to pet and play with the cats.
• Ari’s Bears was her idea and she used her own money to get it started. She came up with the logo design as well.
• She was fearless. Her 11th birthday party was at an indoor skydiving place. Most of the kids did it but all were nervous at first. Not Ariella. At amusement parks the bigger, crazier the ride, the better. She loved going on boats but only if they went fast. She went flying down hills on her scooter and skateboard.
• She was a great hula hooper (she got that from me),
• She loved to ice skate.
• She was a great cuddler.
• She always wanted to comfort others who were sad.
• She was messy.
• She was strong and resilient and brave and optimistic.
• She was independent but also still loved spending time with us.
• Every once in a while she would say she wanted a sibling but mostly she said our family of three was perfect.
• She was sassy and could back talk like a teenager.
• She was thoughtful.
• She was kind, caring, and compassionate.
• She hated dressing up. Sweats were her outfit of choice.
• She donated her hair twice for wigs, way before cancer was on our radar.
• She was a great friend.
• She was the best daughter.

A while back I wrote some posts about running, about what running means to me and why I love it (Just Run), (Finding Meaning in Running), (Running Towards Memories) and I have realized lately that I have been losing that. My running has been goal oriented with training cycle after training cycle and I have no longer been fueled by my desire just to move, to be outside, but instead by paces, distances, and qualifiers. I did enjoy that, for a time. I liked seeing my progress, seeing what my body can do, achieving PRs, but now it just feels like a chore. Taking away all that I love about the sport.

The other day I had a bad run. A really bad run. Can’t remember the last time I had a run so miserable. Even when I was running on a stress fracture. And in between uninhibitedly cursing, contemplating calling my coach or an Uber to come get me, or just laying on the ground until another runner came along, I truly questioned why I was doing this. I enjoyed the training. I loved the exhilaration after completing a challenging workout. I looked forward to the long runs. I liked trying to achieve new goals. I thrived on the structure and plan, the concreteness of trying to achieve certain paces, of going a certain distance. Until I didn’t. My body needs a break. My mind needs a break. When I was on the trek and had a chance to run, whether it was to conquer the hills or just get some miles in, all I cared about was that I was running.  I wasn’t worried about pace, or time, or PRs. I just wanted to soar. To feel the ground beneath my feet and wind in my face. When I got home from the trek the thought of continuing to train for the marathon just no longer appealed to me. Running was becoming a chore rather than a pleasure. I had just completed 2 back to back marathons plus half a training cycle prior to that where I got injured. I was going to take a break after this cycle but wow I do not want to go out there for another 18-miler or 20-miler right now. I dropped down to the half marathon distance and while there is disappointment that I didn’t have a better training cycle, there is a much greater sense of relief. If I want to go out and run, I can. If I’m not feeling it then I don’t have to.

I want to get back to running just for the sake of running (at least for now). To be in nature, to not care about anything but how it feels, to hear the trees rustling in the wind and the birds chirping. To feel the crunch of leaves beneath my shoes. To be present in my surroundings rather than using music to distract me while trying to go faster for longer. I want to run with the joy I used to have, with the peace I felt when running on the trek, with the carefreeness of a child. I am going to try some trail running. If I don’t break my neck tripping over a root I think it can be just what my soul needs to help revive my love of running.

As mentioned previously, when I set off to do this trek it wasn’t with the intention of trying to find myself or some such shit. It just seemed like an epic challenge for a good cause and I wanted to see if I could do it. But you can’t do something like that and not learn some things. So in no particular order, here are some things I learned on the trek.

• That bike riding is most definitely not for me
• That I can open a beer bottle without a bottle opener
• Some new words
• That I can be happy, maybe not 10/10 happy, but up there, and that I’m ready to be happy
• That I can be silly, playful, and carefree
• About the trekkers and support crew
• That I can be more gutsy and less anxious
• That I can trip over nothing, frequently
• About succulents
• That life is beautiful even with its ups and downs (I once knew this and now I know it again)
• That it’s possible for me to not have an appetite (that never happens)
• That I don’t need to suffer anymore
• What it’s like to see in color again
• About 7 incredible kids
• That walking for hours is quite meditative BUT…
• Running is still my happy place
• That you shouldn’t run hard after eating pizza and half a chicken sandwich
• That this physical and emotional challenge did not come even the slightest bit close to what Ariella and the other children endure(d)
• To be careful when opening a package of chews
• That slurpees expand
• That I can doze off during a tattoo (ok this didn’t happen during the trek but the day after it ended and it commemorated the trek so it counts)
• That I want to live: Ok. So this one is the big one. For early readers of my blog you’ll know that while I was not suicidal I frequently begged G-d to die. I pictured driving my car off a bridge or into a tree. I begged Ariella and my dad to take me with them. While I would not have done anything about it, I did not want to live. As time went on, I no longer felt quite so desperate to die but I would have welcomed death had it come. I most definitely did not fear death. I didn’t feel I had any purpose, anything to live for. With no other children to care for I felt aimless and that life was meaningless. Picturing another 40 years or so living like that was horrifying. But during the trek I felt happy, and I feel happy still. Parts of me that had been dormant for so long came alive again. I realized I can live, not merely survive. And I realized that I actually WANT to live.