Day 365

Life continues to improve after a minor scare. My post-treatment scans included a PET scan that “lights up” with certain cells–most notably, cancerous cells. The full-body scan delivered excellent news in that there were no visible signs of cancer anywhere in my body, but there was a small amount of light up at the tumor site. After a lot of arguing between my oncologist (who feared the worst) and my radiologist (who believed the tumor was dead and the minimal light up was a side effect of radiation treatment), the “tumor board” met and concluded that there was no evidence of disease. Yay! In fact, they don’t even see the former tumor in the scans. From a softball to nothing in a year. Moving forward, I will have an MRI of my pelvis and a CT scan of my chest every three months for the next five years. Then it will become an annual set of scans until something else kills me.

Thanks to the clean scans, I had my port removed. This small device was implanted in my chest, with the tubing going into my jugular. It made the delivery of chemo faster, safer, and easier. Instead of searching for a vein, the needle was put directly into the port. This would break skin, of course, but it would only hurt for a second or two and then be fine for the duration of chemo and fluids (2-5 days of being connected to something. I couldn’t even feel the needle being taken back out. The port could also be used to draw blood, so it was quite useful. Fortunately, I was allowed to keep my port. It was a part of my body for so long, I’m thankful I don’t have to lose it completely. See how cute it looks:

This morning I woke up at 5:20a.m. because all of the great news I’ve been receiving means that it’s back to work for me. The last year has been all about getting me back to doing what I love. Incidentally, today is day 365 in my journey. Tomorrow marks one year since I received the phone call that there was “something” on my MRI. So here I am, taking a selfie while cleaning my classroom.

Four former students also came to help–incidentally, the same students who were cleaning my classroom when that terrible phone call came in last year. To be fair, we were eating lunch when the call came in. We ordered from the same restaurant again today.

After a year of this journey, what have I learned? Enough to know not to share the answer to that question and enough to know that having lunch with those same four students today makes me about the most fortunate person on the planet.

This is the beginning of the rest of my life

I’m a tad behind on reporting the obvious: late Friday night, chemo ended. A journey that seemed impossibly long when it started on October 4 came to an anticlimactic conclusion. A few loud beeps and it was over. I’m still utterly confused as how the time passed, how I managed to make it from point A to point B (or whatever the 17th letter of the alphabet is). Excitement filled the air and God’s reassuring presence vibrated through every molecule. I still don’t understand how prayer works exactly, but the energy is palpable. I was never alone in the journey and for that I am grateful. I am also thankful that I can turn a hospital stay into MGH Summer Camp.

In music therapy, I mastered the iPad commercial that makes me smile every time (“Heart and Soul”). In art therapy, I made a stunning wallet out of duct tape.

After chemo ended, there was only one thing left to do (calisthenics, of course!). If you click here, you’ll see what I mean.

And now, the rest of my life.

Where do I go from here?

I’m currently 2/5 of the way through chemo cycle 17… of 17! This is it. I have been ridiculously happy at the prospect of ending this leg of the journey, yet I’m not sure what to do next.

I feel very lost about what to do with my post-chemo life. I haven’t had to worry about how to spend free time in so long (I’m referring to truly free time–the kind where I’m not anemic and have the energy to take on the world). I find myself with very little to say lately. I’m not sure how to re-connect to this world that I’ve been shut out of for so long. I suppose I’ll figure it out as I go along and it won’t be as difficult as it seems.

I’ve looked back at email conversations I had with a trusted rabbi when it was first discovered that I had a tumor. I thought perhaps I could reconnect with myself by reading my innermost thoughts at the beginning of this journey and use them as a guide for the future. I was wrong. It was very emotional to revisit my mental space at that time, to watch as I desperately attempted to make sense of my rapidly changing world. Ultimately, though, it gave me no hint of where my life needs to go next. Or maybe it did. Gratitude and a need to give back do spring to mind. Gratitude because I don’t feel so helpless anymore and because I didn’t need the terrible surgery that they originally said I would require. The need to give back because I have had every advantage in fighting this disease while billions of people do not have access to such medical care. Gratitude because my side effects have been comparably minimal and I made it through pretty darn well.

Teresa Heinz Kerry is at MGH, most likely in the celebrity wing (such a place really does exist). Sparing us all great embarrassment, MGH serves Heinz ketchup to patients. The last 9+ months has seen quite a few high profile visitors and patients. Still wish I’d been able to see Michelle Obama’s arms.

This morning, an osteosarcoma survivor was chatting it up with patients and delivering stuffed animals. She ended chemo shortly before I started and is approaching the end of all treatment now. It’s always great to meet young, happy survivors who are giving back to the community. I got a dog that reminds me of my parents’ dog.

The attending on the floor asked me to speak with a Stanford premed intern who is considering an oncology path. Although it was presented as me being a strong candidate to convince him that oncology is awesome, I can’t help but wonder if I’m actually being chosen to scare him away. So I’ll meet with him tomorrow and go over my experience. Pretty cool to have a chance to shape things from the doctor/patient relationship side of things.

Saturday morning can’t get here fast enough… even if I am barreling ahead towards an unknown.

Reopening the Gates

Lately I haven’t been writing. I’ve become intensely private with my experience. I’m cautious of anyone who wants to know more. I don’t know why. Perhaps as the end of treatment approaches my brain is trying to process the experience and isn’t ready to make any statements or field inquiries from others. Oddly, today I feel like writing. Perhaps from excitement/joy/gratitude. Perhaps it’s just time to release some thoughts. Either way, I’m sure it’ll be a little disjointed.

After quite a bit of debating, I managed to convince my oncologist to order an MRI of my sacrum, the first one since January’s dramatic results. I’ve been told that there will always be a mass in my sacrum, but so long as it isn’t alive, I’m fine. The mass is significantly smaller than it was before and is actually not visible from one angle of images. It also marks the first time I was able to get through the MRI without taking a break.

My oncologist is currently split between two MGH locations so I met with another trusted sarcoma expert for the MRI results. Without me knowing what he was looking at, he pulled up the November 2011 MRI that Dr. Alice Truong at Tufts Medical Center said showed nothing. This MGH oncologist, who had never seen this particular MRI before, quickly pointed to a spot on the screen and stated “You can see the top of the tumor here.” I didn’t realize how obvious it was to the trained eye until he so quickly and easily spotted it. There’s still nothing I can do about the past, and anger is unproductive at best, damaging to me at worst. Still, to say it didn’t rattle me wouldn’t be honest.

Previously, the idea that I was “fighting cancer” didn’t seem to fit because I was merely showing up for appointments. As time goes on, I get what the “fight” really is. It’s more of a mental fight, a battle to keep inner peace and happiness while all of the comforts of a blissfully ignorant life are ripped away. It’s finding a reason to wake up and enjoy the day when storm clouds just keep circling.

This evil disease really doesn’t care who its victim is. I follow the stories of many other Ewing’s warriors and I’m always struck by the diversity of the warriors. Healthy, active, socially responsible people. Older, younger, some born fighting the disease. The survivors and victims are equally diverse. There is just no pattern. I want to make sense of it all, to justify my own experience and the experience of others. But there is no human logic behind it as far as I can see and I’ve wrestled with it quite a bit. I am no more or less deserving of a cure than anyone else. Shocking no one, I have no clue how life works, but I feel a responsibility to make it worthwhile and work for the betterment of all for however long I have on this planet (hopefully decades). I feel most alive when moving towards a better world, which also includes building connections on a one-to-one level. So I am fighting and I will continue to fight for the meaningful life that we all fight for. It just so happens that my main opponent is cancer while other people face different opponents.

Disjointed, indeed. Oh, and I left out another major step: cycle 16 of 17, my final two-day outpatient cycle is over–and my lifetime limit of doxorubicin has been reached.

My beloved primary nurse brought me two delicious cakes to celebrate. We indulged with the other Ewing’s sacral patient and her mother and older brother. A close friend spent the final day with me and we went out to eat afterwards. Ended up staying up all night watching “The Shining” (my first time seeing it) and contemplating its messages. Nausea has been worse last cycle and this one, but still no vomiting. I feel quite fortunate to be skating through these final treatments so easily and I pray that it continues.

10, 9, 8…

Eight more nights of chemo. Trying out new hair styles in preparation for the return to the real world.

That is all.

Just a man and his will to survive (so he can use parentheses all the time)

Having had doxorubicin added back into my chemo regimen for the first time since radiation, I now have a very clear idea of which side effects it is directly responsible for. I would use my feet to kick doxorubicin in the face, but my feet really want blisters and are generally uncomfortable to use in any way. A sore throat reminds me that I should never be too comfortable, while digestive issues remind me that going to the bathroom should always be a frightful experience. I mean, really, if you turn your head to the side and squint, a toilet resembles a monster–and we should be afraid of monsters, right? So the way I see it, doxorubicin is a horrible, horrible drug that teaches valuable life lessons (and saves lives in the process).

As I started the last cycle with low platelets, it was not at all surprising to find out that I still had low platelets two weeks later. My pelvis is no longer capable of producing cells at the rapid pace that it used to and we are getting into the final leg of chemo, so things are going to move a little slower now. So it looks like a three-week break between cycles this time and that’s still good, especially considering all the factors at play now. There is, of course, one more factor: as the Duchess of Chemo likes to say, “You’re young… but you’re not that young.”

I obsessively read everything Ewing’s that I can find (it comforts me) and I discovered a potential 6-12 month extension of chemo using two other drugs. A doctor at MD Anderson (a highly-respected cancer center in Houston) advocates it for all pelvic Ewing’s tumors and he really frowns on tumors of the sacrum (like mine). Quick side note: I am all about the parentheses in this paragraph. Back on topic: I asked my oncologist and nurse practitioner about it and they had never heard of it being used as a preventative measure. They use it for recurrences or as a second-line regimen for non-responders. They also reminded me that chemotherapy can cause a second, treatment-related cancer (such as a type of leukemia, which is absolutely devastating in adults), so adding in more chemo also increases the chances of some other sinister event occurring. With no real research to support additional chemo, and the miserable condition my bone marrow will already be in by the end of our current treatment plan, they really don’t think it would be wise to attempt additional cycles. They also want to keep the drugs available in case I ever do need them (God forbid). I am fortunate to have a team that I trust to help make the right decisions for me. It’s all a big guessing game, measuring odds that may or may not even relate to me, and hoping that we’ve made all the right choices in an absolutely unpredictable situation.

An unexpected change has quite recently arrived in that I am not thinking about Mr. Ewing’s Sarcoma all the time anymore. I can now go several minutes without even considering Monsieur EWS and hours without having a significant thought about Señor Sarcoma de Ewing’s. Minutes may seem paltry (and hours only slightly respectable), but it’s such a drastic improvement that I am thrilled to have it. I am fortunate that my side effects continue to be minimal compared to what they could be (I can’t imagine how those with severe side effects make it through such a lengthy treatment) as I’m sure that helps me forget about cancer for a little bit. Still, I’m tired of chemo. I’ve had it. I’m done, ready to move on. But since I’m not actually done yet, I’m not moving on. As my top priority is to survive, I must keep doing what needs to be done. So three more cycles. Twelve more days of being connected to those damn bags. Easily achievable at this point.

Bonus thought: At this point, it is entirely possible that I am cancer free. The best way of knowing is a PET scan, but I won’t get that until after treatment is completely finished in July. But it wouldn’t be crazy to be cancer-free right now. That’s a pretty cool thought.

Mr. Toad’s Wild Ride

Sometimes, chemo hands me a little favor: my immune system returns to full force, I have energy, and a weekend hits simultaneously. The result is getting to live a halfway normal life for a few days and I took full advantage of it. Upon receiving word that my body could protect itself from infection, I jumped on the subway and went to my old physical therapy center. I had to thank my physical therapist face-to-face for what he did in giving me a fighting chance against cancer (if it weren’t for him, I probably wouldn’t have stood a chance). Throughout this experience, gratitude seems to be the most common feeling. For all the crap I give humanity, there are an awful lot of amazing people doing their part to make this world what it could be.

Fast forward through a weekend of good times (I sat a lot because my red blood cells were slacking–but, hey, I was sitting pain free so there’s a silver lining). Monday morning, blood work, and my platelets were just barely acceptable (74 out of the desired 75). As I am now far enough out of radiation, doxorubicin was added back into the mix. I took a picture that I find rather ominous of its return to my bloodstream. Maybe it’s just because I know how it feels to receive the drug or maybe it really is a creepy picture.

My oncologist and nurse practitioner cautioned me of “radiation recall,” where the doxorubicin irritates the radiation site significantly and could make sitting impossible again. Thus far, it hasn’t happened. It’s not a guaranteed side effect so I’m hoping I dodge this one, too. So far things are pretty typical: I’m tired, I feel gross, I’ve slept more than most people do in an entire week, I have trouble concentrating, and my tongue feels like it has a film over it. I hope any remaining cancer cells feel worse than I do.

Warning Labels

With all the talk of side effects to chemo, it was never brought up that head injuries could occur.

Due to the narrow street I live on, as well as being on the fourth floor, in order to see what’s happening outside I have to be quite close to the window. This most often results in me cracking my skull against the window.

I am burning through my second set of eyebrows quite rapidly and I often look at them in the mirror (because they are such a faint color, I need to be close). Moving in, I regularly smack my head against the mirror.

When brushing my teeth, I lean over the sink to expectorate and end up head-butting the mirror then, too.

I laugh at myself for the frequency with which this happens, but the suggestion came that without hair on my head I don’t get the last-second warning that my skull is too close to an object. Call me old-fashioned, I just think we should be notified if a drug’s side effect is taking away our skull’s sense of proximity to an object. This “sense” may also be another reason why we have hair atop our heads in the first place. Sure, most people probably don’t have a reason to be leaning it at objects as often as I do, and others are too smart to let it happen twice, but I really do miss the ability to not smack my skull on things.

Next appointment is Thursday. Not really expecting to be ready to go based on past performance, but I’m not seeing any signs of low platelets so I guess it’s a maybe.

The only other “news” is that I might be a chemo junkie. I saw a picture in the news of a yellow chemo drug and I was jealous that I don’t get any yellow drugs. Previously, I drooled over a patient’s bag of orange chemo. I must remind myself, chemo is not Gatorade.

Was it supposed to be that much fun?

13 down, 4 to go! That feels good to say and I’m sure it will continue to feel better and better to say.

The last week has been a bit unusual due to the Boston Marathon terrorist attack. This isn’t the appropriate forum for discussing the tragedy, but it did influence my experience at MGH for my five-day treatment. President Barack Obama arrived to meet with victims of the attack, but he used a back entrance so we couldn’t see him from our viewing angles. During the manhunt for the terrorists, visitors were not permitted. Fortunately, my 21yo chemo buddy was there so we were able to hang out, go for laps around the floor for exercise, and then watch intently in case the terrorists were brought to MGH as the news initially reported they would be (they were not). As I was not directly impacted by the terror attacks, the most I wish to offer in this space is that we need to let the victims, their friends, and their families experience what happened to them. News sources and Facebook status updates claim they are finding closure or peace or something like that with the arrest and tributes. I find that terribly insulting. Each person needs to be treated as an individual. Some will find closure and some will find peace, but some will not, and some will do it far later than others. Reread my last blog post for the unrelated-but-applicable discussion of negative thought patterns in my own experience. People not going through something directly have a tendency to want others’ healing to be a very particular, unrealistic way.

On the days when guests were allowed, I had piles of them, but I really enjoyed having a chemo buddy to make the experience less isolating. We’re there first thing in the morning when guests typically haven’t arrived yet, there’s someone popping in periodically throughout the day, and someone to walk around the floor with who clearly wants to walk around in circles because we’re both stuck there and need to move. We also understand as much as anyone can what the diagnosis of cancer is like, so we don’t dwell on that. We do talk about our blood counts and funny (or troubling, but eventually funny) situations, but there’s no pity because we’re each in that position. It’s also nice to be around another bald person, but the real draw is to not feel like the only person going through this. Not that I want anyone else to, but if someone has to, I’m glad our schedules lined up to do it together.

Security outside of MGH was tight throughout the week (until the capture). The night of the manhunt we watched out the front window, wondering if the country’s focus would descend on our hospital. A night nurse couldn’t sleep all day so she baked a moist chocolate cake and we sat in the hallway eating it. Between the staff, chemo buddy, guests, and hoopla, it felt more like I was away at camp than getting chemo. Definitely one of the easiest five-day treatments thus far. Here are a couple shots from the night watch.

This is the first five-day chemo in months that I did not have a blood transfusion during. My numbers are holding up well and I hope this is a good sign about the strength of my bone marrow. Only time will tell, but I’ve pulled out some far worse numbers in the past. Chemo buddy showed me how to access an online history of my blood work so now I can absurdly pick through everything and pretend that I remember minute details that may account for changes in my counts. My counts do seem to have a mind of their own, but I’m still searching for patterns other than the obvious chemo makes them go down, not having chemo makes them go up. Pretty sure a doctor or nurse would have caught such trends before, but it passes the time nicely to have me on the lookout.

Getting out of the taxi this morning, I must have accidentally pressed against the part of my backpack with a “self-affirmation” device in it that a friend gave me as a gift. I hope the cab driver appreciated the harps and declaration, “You are awesome!”

The unpleasant times

I’m going to make the attempt to explain my negative thoughts. I am not experiencing them at this moment so don’t worry. At the same time, it’s fair warning to anyone who doesn’t want to know what my negative thoughts are that they should probably stop reading here. Now I’ll do what I think all terrible writers should do: use a rhetorical question.

How do you tell someone–especially someone who loves you– that you feel unsafe and there is nothing anyone can do to rescue you?

About once a week, I feel unsafe. My body is both me and the enemy. The chemical warfare going on within my body is not guaranteed to bring victory to me. Sometimes I am left alone with thoughts I’d rather not have. Thoughts of treatment failing or the disease coming back. Thoughts of a life that I won’t get to live, thoughts of not being able to watch over people I’m worried about, thoughts of the people I love trying to live their lives after suffering a tremendous loss. Yes, in my imaginary scenario, I’m a tremendous loss. You’re all devastated and some of you have trouble functioning. I actually find this funny to think about in a very dark humor sort of way.

When this feeling overcomes me, why don’t I say anything? That’s an easy one: I can’t stand the responses. Simply, there is no comforting answer and everything else is just frustrating to hear. “Be strong” is silly. If I’m in a weak place, being strong clearly isn’t an option. If it were, I would have taken it. Efforts to convince me that everything will be okay are pointless because that’s how I feel most of the time. If I’m having a little breakdown, that means I’m not thinking like my usual self. It means I’ve taken those thoughts and dismissed them. Someone else bringing up those thoughts won’t change my mind if I’ve already thought of–and dismissed–their validity. Then there’s the wishful thinking of “if you just need someone to listen and not say anything, you can call me.” The problem isn’t that I need to vent. Sometimes bad thoughts creep in. It’s totally normal and to be expected. I just need to have those thoughts, experience those emotions, and then move on. I’ve done it for months and I’m quite jovial most of the time so it appears that I know what I’m doing. Sharing when I have negative thoughts can be aggravating simply because people do respond. I don’t want a response. No response will change anything and I just need to ride out the thoughts. Sharing what the thoughts are here bothers me because I fear that someone will try to respond to them.

I realize that when people say various things to me, it is always because they want to help and they just don’t know how. The fumbled attempts to make me feel better are actually the best thing anyone can do. This experience can be terrifyingly isolating. No amount of “you aren’t alone” comments can remove the fact that this experience is entirely within me. No one else gets to fight this war for me. I guess that’s the grand paradox of my experience: it’s completely alone and completely not alone at the same time.

To round this out, I will kindly thank friends and family in advance for not leaving me comments that try to discount what I’ve said here. I have a few bad hours here and there. I know you love me, I know you want to do something to take away the hurt, but you can’t. That’s not an insult to anyone and I know it will hurt some people to know. It is your constant love and support that makes it so the bad times are rare and something that I can overcome without talking to anyone about them. I’m just trying to share another part of this experience with you by explaining what the negative thought patterns are like. Moreover, I’ve had a great day with zero negative thoughts so I’ve written all of this from a positive place. Writing me something to lift up my spirits would be a bit foolish since my spirits are already up. So please show me some respect by not responding. I know you care, that isn’t the issue. Just let my truth exist. It’s healthy, it’s normal, and it’s completely under control.

Medical update: the two chemo drugs I did have, vincristine and doxorubicin, are both known to release platelets. As a result, my blood counts are looking good. My white blood cells and neutrophils were both very low, but not the lowest they’ve been. We are hoping to do cycle 13 of 17 on Wednesday (it’s the five-day resort stay). As another patient’s mother suggested, a nice way of looking at the situation is that I only have 19 days of chemo left. It will take until July to administer it, but I will only be connected to chemo for 19 more days. That’s not too shabby!

I have thrown off my sleep schedule quite severely, but the hospital stay should fix my little red wagon. Chemo makes me sleepy and they’ll wake me up quite early each day for breakfast so I will return to a more normal schedule soon enough.