A Silver Lining

Shout out to my wonderfully liberal state of Massachusetts for conveniently just making medical marijuana legal! Although, they have yet to establish any infrastructure for this thriving business opportunity, so I was forced to take some alternative routes… Zach, being the amazing and helpful big brother that he is, jumped right on this opportunity to once again come to my rescue. Naturally, he turns to our loyal friend Google and finds a local doctor looking to prescribe. I guess I shouldn’t have been surprised at how easy it was seeing as you can find pretty much anything online these days- even love. So we set up a meeting one afternoon and head to the office. There we find the doctor’s assistant and an empty office with two chairs…… (and empty means literally no other furniture… like get sketchier). So we sit and wait- in the two chairs- for the doctor to arrive. He examines me, I show him proof of my diagnosis, and he prints out a piece of paper and signs it. And that’s it… Who knew it would be so simple! So our next question is where to get the goods since no dispensaries are set up yet. Zach consults Google again who connects him to my “caregiver” (A.K.A. personal dealer) who I can call and he can bring me the marijuana to the house. Where he gets it is up to him, but mine happens to grow most of it himself. The whole family sat down with him: he’s a stay-at-home dad, mid-30s, and as my father puts it, has a Ph.D. in Cannabis. He knew everything there was to know about cultivating the crop, cooking with it properly, and the best products and methods to getting the biggest bang for your buck. Don’t misunderstand, this guy was no pothead; he was more of a botanist teaching us about the origins and different strands of the plant. He really helped us understand and appreciate the medical and therapeutic aspect of the drug, whether the benefit is actually physical or if it just helps you relax and get your mind off the sucky situation you’re in. Previous research in the field had clued me into its ability to increase my appetite, but I have also found it is very effective in reducing nausea, which I especially welcome the first few days after treatment. Two hours later I have an ounce of weed, have placed an order for the Volcano (nerdiest vaporizer around), and am feeling pretty good about myself.

A Day in the Life

I started my fifth cycle of chemo today. One cycle is a month, during which I receive chemo every two weeks, and I have a total of six months. I arrived at the hospital at 11:00 and checked in. They took my vitals (weight, temp, blood pressure, etc.) and I waited a little more. I moved into a room with a bed- I think this was the universe’s birthday gift to me. Usually I sit in a recliner labeled “Chair 2” in a room with three other patients. My mom is often with me and sits in a normal chair (hiding her jealousy of my electronic, spacious, leather armchair). I normally look around at the other people in the room wondering what their stories are, guessing what point in their journey they’re at. There are definitely regulars. For example, the Eastern European elderly couple- she may be old but she seems tough. Or the young woman who chooses to bask in the glory of her baldness- now that’s bold. There are curtains that can be pulled to separate us, but if we’re being honest, the sunlight makes them see-through and nothing is stopping me from hearing the personal questions being answered about their bowel movements…. Can you say TMI… But who am I to talk, I’ve gotten a few shots in the butt behind that curtain and have clearly discovered too late I’m probably giving someone a show. Dignity quickly gets shoved out the window by illness, what a bully. I know I’ve been a “regular” for some time because the nurses know me and I don’t even have to tell them my name to check in. Maybe it’s the fact that I’m wearing my Colby hat almost every time (go mules!).

Anyway, with a room to ourselves and a reclining bed I’m feeling pretty good. Small victories… I was a little cold so the nurse brought me a heated blanket. This is by far my favorite thing about the hospital- they combined an oven and a closet and upon request I can be layered with multiple hot silk throws hand embroidered in china (well they may not be silk or embroidered, but they were probably made in china…). In July I had a port surgically put in- it is a small device under my skin on my chest from which they can both draw blood and administer the chemo drugs and other IVs. I think it’s really cool actually, I can shower and swim with it and it saves me from getting a needle stuck in my arm up to a few times a week. It does still pinch when the needle enters, but I’ll take the lesser of the two evils. My blood was then sent off to the labs (they put it in a cylinder and it is shot through a tube to another section of the hospital- it reminds me of when Zach and I would send notes to each other at the science museum through a similar thing- that always makes me smile). Per usual it took awhile for the blood results to return, but when they did my resident doctor came in to check in and give any updates. She then brought in my attending doctor who was in a great mood today and informed me I get to take two days off from my daily shots this round! (I repeat: small victories).

Today was also special because Lisa (Colby roommate and amazing friend) stopped by on her lunch break just to say hi and hang out for a half hour or so. I mean, how many people even think to do that. That really made my day and interrupted my riveting routine. Thanks Lisa! After the doctors were finished with me, they put in the orders for the chemo drugs, and the waiting ensued. I finally got hooked up to the pre-chemo anti-nausea IV. After that they brought in the good stuff- yay toxins! Those lasted about an hour and a half and were followed by another anti-nausea drug. During all this time I made some headway on a few of my newfound hobbies: knitting, candy crush, and watching Scandal. Time well spent if you ask me. My port was deaccessed and, circa 4:15, mother and I made a break for the door. As we left my mom said, “I think we missed a day of summer.” I think she was right, it looked beautiful out- I hope you enjoyed it somehow, I know I did- another chemo session down! Small victories..

Mazel Tov

I was walking down Harvard St in Brookline to get some bagels and shmeer with a scarf on my head and felt a real connection to my Jewish roots and have since started incorporating more Yiddish into my vocabulary. Examples include:

         “Today I organized the tchotchkes in my room.”

         “I’m shvitzing, now I’m cold, now I’m shvitzing again.”

         “Mom you’re such a mensch for handing me the remote.”

         “Oy vey this sucks.”

You’ll now notice a mezuzah on our front door.

On a more serious note…

This is going to sound like I’m being humble and strong, but I promise you I’m just giving you the facts. It is a strange thing to be so thankful at a time like this, but I learned extremely quickly how relative everything is. I will now list all the reasons not to feel bad for me:

1. My diagnosis conveniently waited until two weeks after graduation, even though we speculate it started a few months before. This way I got to finish school and actually enjoy it without missing one class or celebration.
2. I LITERALLY have the most treatable cancer that exists. If it had been Non-Hodgkin’s, it would be a completely different story, but no, it’s Classic Hodgkin’s and they have essentially been curing people of this for as long as 30 years. There was also a moment of panic where we awaited to hear if it had spread to my bone marrow, but nope I was in the clear. I also got to move from stage 4B to stage 4A, which may not seem like a lot but basically credited my nastiest symptoms to mono rather than the cancer which was HUGE. Only six months and I’m done.
3. My neighbor happens to be a doctor who got us in touch with my oncologist who happens to be one of the leading lymphoma specialists in the world… Not only do I live 30 minutes from the medical capital of the world, but I am in a set of the most capable hands possible.
4. Having just graduated, I actually didn’t have any plans for the summer so it was easy to adapt to my new schedule. I also could easily withdraw from City Year, which I had only committed to for one year, in order to finish my treatment this fall. I’m just taking an unexpected gap year.
5. Both my dad and brother follow a school schedule so they had the summer off as well and Zach could come home much more often than usual to help out.
6. My mom doesn’t work so she could easily postpone her volunteer and other commitments this six months to take me to appointments and just do whatever is necessary at the shortest notice.
7. Many of my friends didn’t begin their new jobs until mid-August, so they have been around all summer (and lots are still in the area) to make me feel loved and supported like the amazing friends they are.
8. As a family we have the means to not be stressed financially with the often crippling costs that treatment, drugs, commuting, and much else can cause.
9. Along the same lines, I have no obligations. I don’t need to work to support a family or myself and I’m not trying to keep up with classes. I can sleep in most days and sleep all day if I need to. I have the greatest respect for those who balance treatment with raising and providing for a family or themselves. There are so many people out there fighting for their lives while dealing with countless other stresses and it is them that we should be feeling for and reaching out to.
10. This is the biggest mystery to me: I have reacted so well to treatment! Yes there are days or weeks that are better than others, but overall my body has adapted tremendously. Each cycle of chemo is different, and there are always certain side effects that creep up, but most are manageable with medication and some rest. I’m not saying it has been easy, and the doctors have warned me it gets harder as you go (which I would agree with), but don’t picture me as the cancer patient you see on tv, bedridden, throwing up, depressed. I’m going about my normal life as best I can and enjoying a lot of it.
11. The most important thing, however, has been my family. I honestly would not be so positive and healthy both emotionally and physically without them. My mom stayed overnight with me on a miniature cot in the hospital for twelve nights at the very beginning. Looking back, if I had those hours alone, who knows where my mind would have gone. Instead I could wake up at 3am drenched in sweat and she would jump up to help me change or hobble with my IVs to the bathroom. There is nothing more comforting than that. My dad drove after many long school days, and through his own shoulder and neck pain at the time, to bring me froyo and keep me company so my mom could go home and shower. Zach stayed home as long as he possibly could to be there to help with the dogs and be an extra set of ears for lots of decisions and new information, as well as visit me and make me laugh. It’s funny to think that in years to come we may look at this experience as something that brought our close family even closer together. This summer was about all of us supporting each other, because cancer affects the entire family, not just the patient, and sometimes it is those around you who need the reassurance and comfort more than you do.

Identity Crisis #1

Upon shaving my head I quickly noticed my uncanny resemblance to the alien emoji. This is not the first time I have questioned who my real parents are, but they still seem to be sticking to their story, so for now I have no choice but to believe them and continue living off their food, shelter, and means.

I also feel a strange kinship to Dr. Evil’s hairless cat.

The things that really matter in life, like my hair.

Call me (and probably every other young girl or even woman who finds out they have cancer) superficial because my first thought upon diagnosis was IM GOING TO LOSE MY HAIR! I’m sure there was a second there that I also thought, I’d like not to die, but once that was swept off the table, my flowing locks were my first concern. Yes, I knew it would grow back, and most say it comes back even nicer, but its the public nature of it that is so scary at first. I’m a pretty average looking person who likes to blend in with the crowd, so all of a sudden publicly declaring myself in this subcategory took some getting used to. Unfortunately I have an amazing role model who has dealt with this kind of thing (and much more) every day for the last 25 years so I knew I could handle it, and now I find myself wearing a head scarf with a strange sense of pride, like I’m part of an exclusive club. (But it’s not that exclusive and we don’t want any more members and your worst nightmare is to be in our club….) On the bright side, my shower time has been cut in half, my friends say I’m trendy just because I have a scarf on my head, and I rival my dogs for who has the softer head (although its hard to compete with fur). Now I’m just dreading that awful in-between stage of growing it back out: buzz cut length = ew, bowl cut length = gross, and then there’s like one-inch long length in-between those that haunts my nightmares. So tell me I look good even when I don’t.

For those of you who don’t know, here’s a brief intro:

In June I was diagnosed with Hodgkin’s Lymphoma. I am technically stage 4 because it is above and below my diaphragm, but after a few tentative days we were assured it was completely treatable and had nothing long term to worry about. Short term however, I have six months total of chemo. I was supposed to do City Year in Boston this September but had to withdraw and am just living at home seeing friends, taking art classes, and taking up lots of hobbies when I’m not commuting to Beth Israel Hospital in Boston. I have reacted really well to everything both physically and emotionally and so far everything is going as planned. My family and friends have been amazing, which is just as important as the drugs in the whole process. All the thoughtful texts, emails, calls, and gifts are so appreciated.

 

I’m not much of a writer but, oh and I don’t like a lot of attention, oh and I generally would never dream of writing a blog, BUT I have a lot of thoughts and a lot of time these days, so here it goes…