raditation was definitely not easy street.

i just reread my last post to the blog where i talked about my last chemo treatments, my negative PET scan, and radiation. i had anticipated radiation being a breeze. well, in interest of full disclosure here on golden gloves: radiation was HARD. but, before i get into the specifics of my radiation treatment and how sucky i found it, let's just have a moment of HOORAY here on golden gloves. officially, i am all done with cancer treatment!!! and, if i have it my way (which i will), its OVER FOREVER.

i completed my last radiation treatment, i think, on 11 may. ...i think... you'd guess that i would have that date etched in stone. but, to be honest, i was so spacey and so tired by the end of it all, i had little energy left over to do more than sigh (snore?) in relief.

so, anyway, back to the amazingness of my radiation treatment. i really have nothing good to say about radiation except one thing (and that one thing holds a lot of weight) having radiation, although putting my body at risk for secondary cancers, puts my cure rate for hodgkin lymphoma into the range of greater than 90%. so, you know, that's a plus. but, the cons of the experience itself. wow.

i went to the hospital every day for 17 days and laid under a gigantic linear accelerator and had a square section of my trunk and throat cooked, front and back, for anywhere from 5 to 20 seconds. it super sucked.

i know i am being unfair in the tone i'm using to talk about the experience. half of the awfulness of it all had to do with the fact that i started radiation after a month break from chemo. in that month my body began to recover physically, which gave me the energy to begin to process emotionally just what had gone down since i was diagnosed in november. truly, i was in a state of what-the-fuck. i think going back to the hospital everyday to have a treatment i could feel taking a physical toll on my body completely frazzled my sensitive emotional balance.

i cried a few times on the table. my throat became sore a week into the treatment. my skin in the radiation site became red and sensitive, much like an intense sunburn, a week into the treatment. my lungs definitely became sensitive from the radiation exposure. i saw a nutritionist that put me on a heart healthy diet for the rest of my life due to my heart's exposure to the radiation. aaand, the techs dropped and broke my lead block -- a special protective barrier that guards part of my lungs, heart, spine and mouth from the radiation beams. the block dropped on a thursday but the missing lead piece that protected my spine was not discovered until tuesday of the next week. that sucked. just a little bit.

okay. dwelling in the crappy aspects of radiation -- over.

so, here i am. two months out from radiation and all of my cancer treatment in total. how am i feeling?

i am feeling tired. not as tired as i was feeling a month ago, but still tired nonetheless. i'm still a bit spacey. and, i'm more interested in being cozy at home than i am out adventuring in the world, which if you know me is completely antithetical to my personality.

my sore throat has gone away. the hair that i lost during chemo is sprouting back in -- little spikey tufts, sticking straight upwards (yay!). the hair i lost during radiation (a large patch going from ear to ear, from my neck up to the middle of the back of my head, smooth as a baby's bum) has yet to make a reappearance. luckily the hair on the back of my head covers the cleared patch. otherwise i would be single-handedly bringing bad 90s hair back to the world & i know no one is ready for a revival of the undercut.

i have to say, it's incredible to being taking a break this summer. being able to just be and relax is so wonderful for my body's healing process and for my mind and spirit to process through the unimaginable perspective shift that cancer diagnosis and treatment bring.

so, here i am. doing my best at relaxing. updating my cancer blog.

i'll keep this blog live as long as posterous lets me. i intend for it to be a resource for other people diagnosed with hodgkins or any other type of cancer. i'll most likely update the blog along with my visits to my oncology team. for the next two years i'll be on a six month monitoring schedule. for the following three years after that, i think i see my oncology team yearly. and, after those five years, i will be cured. may 2016 here i come.

treatments #7 & #8

wow, it has been much much too long since i've posted an update here. after my last post at the beginning of march, i lost a lot of my fine focus & drive to do anything but get enough food and sleep. aaand, make it to class when i felt up to it. i have to say, the last three weeks of chemo were definitely the hardest. i finally understood what dr m's nurse meant when she told me that chemotherapy's side effects would be cumulative during the course of treatment. everything would feel harder and worse at the end -- and it did.

but, wait a minute, we need to have a small moment of celebration here on golden gloves because, I AM DONE WITH CHEMO! so lovely and wonderful and amazing to type. my last (8th) chemo treatment was on friday 25 march.

(download)

Click here to download:

lastchemo.mov (9.98 MB)

not only am i done with chemo, but my PET scan that dr m ordered between treatments #7 and #8 came back NEGATIVE. which, when dr m gave me the news, i was literally speechless... there have been very very very VERY few moments in my life when i have felt that bottomless-holy-shit feeling, hearing this news was one of them. for the rest of my day after my appointment with dr m i was elated. walking on clouds. so happy. so so so incredibly thankful. thankful for my life, and thankful for my body. after leaving mskcc, dave and i just stood outside the building on the sidewalk and stared at each other smiling and crying in silence. the only word that can approach describing how i felt is profound. not really profound anything, just profound profundity.

a negative PET is a big deal in the world of hodgkin lymphoma treatment. not only does a negative scan mean no evidence of cancer in the body (WOO HOO!!!). but, a negative scan also puts a patient into a great statistical category -- statistically a patient who has a negative PET during treatment with have an improved chance of progression-free survival. basically, chances are higher that i'll get to hang around a lot longer and party down with you all.

every day since my last chemo treatment, i feel stronger, better, more healthy. i feel my body return to me with every day. with each day, i am a little less tired, a little more focused, and my unflagging energy returns bit by bit. i am so happy. so so happy.

for the past couple of weeks i have been enjoying the absence of regular hospital visits. but, today, that comes to an end for me. i return to the glorious mskcc to begin my radiation treatment. without radiation the chance that the cancer could return is higher. basically, my drug therapy, ABVD, killed off about 99.9% of cancer cells in my body. there could be that one cell lurking about, missing the hint to get the fuck out. so, with radiation, the areas in my body where the tumors were get zapped, killing off any potential cell trolls.

my radiation therapy consists of 17 sessions. each session occurs daily monday through friday. i'll be getting zapped regularly for the next four weeks. seems like easy street compared to chemo. there are side effects to be aware of -- the short term could include debilitating sore throat and fatigue, the long term could include some thyroid craziness, potential for heart disease, and potential for secondary cancers. (who signed me up for this crazy ride again??)

aside from immolating cancer cell trolls into oblivion, a perk of radiation will be the side effects of superpowers. what? no one ever told you that cancer patients get a superpower when theyre done? well, we do. we get to choose one after radiation -- flight or invisibility. of course, i choose flight.

treatments #5 & #6

okay, okay, okay -- i know you are all clamoring for the update! what is the hell is going on in treatmentown??
sorry for the quietness over here. it turns out that going to graduate school and undergoing chemotherapy can keep you a little busy. who knew?

i think last we left off, i had four more treatments to go. well, that number is significantly smaller now as i only have TWO MORE TREATMENTS! two more. i am counting down the hours, people. okay, not really. but i am counting down the days. there are 18 days left as of today. i am really ready to be done with chemo. really. ready. and, i'm really tired. really. tired.

my previous two treatments were pretty uneventful. just the usual side effects, which i am simultaneously thankful for and cannot stand. there are a couple more awesome side effects though that i shouldnt miss sharing: acid reflux and chemo brain. the acid reflux was awful. horribly awful. until i shared my symptoms with my doctor. then, i received a prescription of protonix, which is amazing. the drug, which i have to take once daily, allows me to be symptom-free and return to a normal diet.

then there's chemo brain. i didnt know what to expect with chemo brain. i wasnt sure that i would experience it. but, its definitely here. the symptoms of chemo brain for me are foggy memory and some loss of congnitive function. that sentence makes it sound worse than it is. i actually feel relatively normal, just a little spacey. and, its actually kind of enjoyable for me to watch my classmates make sense of my mildly rambley contributions in class.

this week brings me to treatment #7. this coming thursday i head to the treatment center for more chemo fun. i have recently found one more upside to treatment (aside from getting to eat ridiculous amounts of ice cream) -- reading. i havent been able to read for the pure pleasure of getting lost in a book for a very long time. i've found that i can only handle so many hours of staring at movies or tv shows, but i can read for hours on end. for the last two treatments i read an entire book each over the course of the weekends. it was awesome. aside from the actual infusion, which is horrible, i'm looking forward to this round of treatment so that i can lay on the couch without feeling guilty and read and get completely lost.

i'll leave you with a picture from my last treatment where i did my best imitation of a ninja. why? who knows -- i think it was the ativan talking.

swanky treatment #4

well, i had treatment #4 of 8 infusions last week, which means that i'm halfway to the end of chemotherapy!

infusion #4 was hard. i had a dose of lupron with my infusion, which seems to intensify the chemo side-effects. i usually dont feel much nausea but with this past infusion, i did. yuck. this is weird to type, but i am looking forward to my next infusion which wont include lupron (yay!) and i'll only feel like a truck hit me, not a tilt-a-whirl and a truck.

i receive a monthly lupron injection (intramuscular, not venous -- woo!) in order to protect my ovaries (just in case dave and i decide to make mini-mes someday). the intense side effects from the shot though are enough to make me rethink that decision. but, i know i'll continue on with the shot. it just sucks. a friend of mine, also diagnosed with hodgkin's who went through treatment about two years ago, said the same thing about her experience with lupron. icky, but needed.

how the drug affects my side effects is partly by increasing my sense of smell and taste. without the lupron injection, i have very mild to no nausea during my 5-day post-treatment ultra-recovery. with lupron, i can only stomach bland, pale food and absolutely no smell whatsoever, and nausea is an issue. adding ativan to my emend, zo-friend antiemetic pill regimen helps.

other than the nausea, things were manageable. no vein pain to report (although i am talking to my doctor about possibly installing a port). i started back to my normal routine by day 5. also, i'm still continuing on with acupuncture for constipation and mouth sensitivity. have i mentioned the acupuncture and how much i love it? (I LOVE IT.)

hairwatch: still thinning aggressively...

a bit on mskcc's brooklyn center: it's awesome! at the main mskcc adult day hospital, where i received my first three infusions, things were focused on the expedient and necessary. typical infusions were performed in large rooms with curtained off sections -- there would be four to 10 patients per room, all being treated for different kinds of cancers. it wasnt horrible, but it was a bit... DMVish, which is weird to think about with a thing like cancer.

the brooklyn center is the complete opposite & i wish i had opted to receive treatment there sooner. each patient has her own room, complete with infusion chair, guest couch, internet-enabled touch screen, sliding glass door, and dimmer-enabled lighting. the rooms are situated in a U shape with a sort of a lounge in the center -- plants, waterfall, library and chilling chairs complete the area. its really nice. i kind of felt like i was at the standard. i'll try to take and post pictures next time -- i was a bit woozy suzie this past trip.

today, day 50, i feel great! so nice to type. here's a little dedication to all my peeps in cancer ass-kicking mode:

it's not called fun-bitis for a reason. (day 61)

hello! it's day 61! DAY 61!!! only 60 more days til day zero -- which means chemotherapy will be over!*

i'm in the middle -- between treatment #3 and treatment #4 -- right now. it's exciting as treatment #4, if all goes according to plan, will put me right in the middle of the whole chemotherapy experience -- four treatments behind me & four treatments in front of me.

treatment #3 was simultaneously a bit more easy and difficult.

the easy part:

i found that i had more energy during my recovery from treatment. i'm crediting acupuncture with that. (skip to the next paragraph if you have an aversion to TMI.) i see an acupuncturist at the the bendheim integrative medicine center, which is part of my cancer hospital, mskcc. i'm being treated for mouth sores and constipation -- seriously. it helps. additionally, i feeling INCREDIBLE after my session. that feeling alone is worth the pricey cost.

the hard part:

i developed chemical phlebitis in the vein in my left arm -- the vein/arm that was used at my last infusion. people, attention: its not called fun-bitis for a reason. and that reason is BECAUSE IT FUCKING SUCKS. like hardcore. i'm not writing in caps or swearing in the previous sentence out of a love of sensationalism. i used all caps and and dropped the f-bomb because that's the appropriate way to write when youre talking about chemical phlebitis.

my left arm, from shoulder to finger tips ached and burned in and around my chemo vein for approximately 5 days. the ache and burn was so intense that it kept me awake for two nights. needless to say i was a total bitch in the waking hours. my husband is now in the running for man of the year.

the cure? nothing.

the only thing i could do to relieve the pain was to exercise or to wrap piping hot towels around my forearm. if you are reading this & are going to begin treatment for hodgkins, get a port. i wish i had.

the good news is that today the pain has subsided substantially and i hope to get a full, deep rest tonight.

hairwatch

my hair, although shedding aggressively, is still hanging around. showers are a little scary as i see a significant amount of hair on my towel after drying off. (note to self: buy black towels.) i am so so so glad i cut my hair very short. i dont know what i would do if the i had ultra long strands of hair shedding off. we'd be drowning in hair tumbleweeds in the apartment right about now.

in other news, school is shaping up to be very involved this semester. i feel really confident about being able to handle the workload while my body heals. there's a ton to do, but it's also a welcome distraction. i had my first critique last friday & i feel great about it. i was quite pleased with my presentation and discussion of my current work.

treatment #4 is up this week. i go into mskcc's brooklyn center for my infusion on thursday morning at 8:15 am... AM. the word on the street is that the brooklyn center has private infusion rooms and is pretty swanky. i'll report back with pictures.

and, now, i leave you with a picture of the perfect recovery breakfast: yogurt, warm water, an emend, and a zo-friend.

* actually, my oncologist says that i will have a PET scan between my 7th and 8th treatment to determine if i will receive 2 more cycles (4 actual infusions) of chemotherapy. its a little ridiculous as everyone already knows that i've kicked cancer's ass. but if that does happen i will end up having charged through 6 cycles of ABVD instead of the prescribed 4 cycles. and, i will complete chemotherapy treatment in may instead of march. i'll keep you all posted on the outcome.

yoga! running! cookies! (day 74)

captains log: day 74 is here. DAY 74! i'm in the 70s people. its a lovely thing to type.

it's monday, the start of the week. and, this week is quite the eventful 7 days. the most exciting moment on the agenda is the arrival of my beautiful sisters. they're cruising in to nyc to do awesome sister-nurse duty. i'm really looking forward to having them here. in a selfish way, i'm so happy they'll be here to help me through infusion #3. but, part of me also wishes i was in one of my off-infusion weeks so that i would have boundless energy to explore nyc with them.

whatever -- theyre gonna be here & that's awesome enough.

this week also marks the start of my spring semester of graduate school. i wonder how the whole semester will go down? i love the program i'm in & the work that goes along with it. but, i dont love the stress i've experienced in other semesters. this semester, i'm going in with the, "its all about me" attitude & placing stress and worry about my performance on the back burner. i really want to stay in this no-stress place. taking care of my body so that it can kick cancer ass has the top spot in my focus right now.

i only have 4 classes, most of them studio-based. so, i feel confident about keeping up with the workload. i'm also very curious to see how my expression and work changes through this process. i actually kind of feel lucky to be in graduate school during the whole curing my body of cancer thing.

and, of course this week is an "on" week for me. on thursday, i meet up with my chemo-sabe and the hodgkin's ass kicking continues. WOO!

my oncologist has me scheduled for an x-ray this thursday in addition to my infusion. so, the day at sloan kettering will be a little longer than the normal 4 to 5 hours. the x-ray is included in the line-up so my doctor can see what kind of activity is going on in my chest (mediastinal) area. cancer had taken up residence in the lymph nodes in my chest and neck, we're going to take a peek to see what kind of havoc my chemotherapy cocktail wreaked on it. i'm actually looking forward to hearing the results.

i also have my first acupuncture appointment this week -- something i am so so looking forward to. a good friend recommended that i have acupuncture treatments throughout my chemotherapy treatment to mitigate the side effects of my cancer-fighting drug cocktail -- fatigue, nausea, & constipation. because i've had my first two treatments without acupuncture, i'm incredibly curious about how my experience will change with the addition of acupuncture. i'm hoping for an even smoother ride through chemotown.

as you can probably tell from this post, i'm feeling great. i rode my bike to school today, have been attending yoga, and continuing to run. i've also been baking and eating a lot of cookies. good thing i can exercise. i've been out on the town a bit too. its so nice to get the hell out of the apartment. i spend so much time here recovering.

last week, on day 7 post-infusion, i met up with a few friends even though my blood counts are supposedly the lowest on day 7. (low blood counts mean that my body is at incredible risk for infection and colds.) i didnt care! we met at a bar & i had a delicious glass of wine. i did take precautionary measure though, like asking dave to open all the doors so i didnt have to touch the handles, drinking water before & after the outing, and drinking my wine through a straw (class-ay). oh, and i was home & in bed by 10:30pm.

know your nodes

there's breast cancer month, there's earth day, there's worlds aids day. but where's hodgkin's day?

well, i did a little googling & turns out, there is a sort of hodgkin's day but it's called World Lymphoma Awareness Day -- it falls on 15 september. put it on your calendars people -- we now have a new day to add to our holiday schedule.

post-treatment wrap-up (day 80)

i went in for my infusion a day earlier than expected (wednesday) this time around. which meant that i was on the road to recovery a day earlier. it was a nice treat.

this infusion's healing time seemed to be on the same schedule as chemo #1. by the fourth day after treatment i was in a restorative yoga class moving my body & sweating a little bit. monday i went for an easy jog. i'm so thankful that i have this break from school for the next week and a half. its so wonderful to be able to take it easy on my body and my mind, doing exactly what i need to for both for a good solid chunk of time.

i'm still a little tired and not yet feeling 100%, but with everyday my body feels stronger & i start getting back to "normal." just in time to meet up with the old chemo-sabe and kick hodgkin's ass again.

hairgate

well, my short & sassy strands are hanging in there. i'm curious about whether or not they'll stick around or i'll end up going bald. the thing with my hair is, about 90% of the time i feel really okay about losing it. it's a small price to pay to be cancer-free. and, then there's the 10% of the time where i get a bit freaked about what i'll look like without hair on my head, eyelashes or eyebrows. the eyebrows part is the worst. no eyebrows is just, well, weird.

anyway, i want to give a heartfelt thank you to everyone that texted, emailed and wooged me out this treatment. it meant the world to me & kept my spirits afloat. xxoo

i get by with a little help from my friends ...and unicorns (day 85)

in order to help the treatment days fly by, instead of dragging slowly, ive decided to make a cancer calendar! amy sedaris would be proud.

i'm the kind of gal who likes to make a list & check things off of it. the cancer calendar is kind of my version of the list. instead of to-dos, i'm checking off days. from the beginning of my treatment on thursday 16 december 2010 to the end of my treatment on thursday 24 march 2011, i have 99 days of cancer ass kicking to get through. i'll be counting down from day 99 to day 0 on the cancer calendar.

as you can see from the name of this blog, golden gloves, i've also enlisted the use of the metaphor of boxing in my journey to being cured of hodgkin's lymphoma -- mama said to knock you out, bitch. (seriously, she did.) and in every TKO match there are the invaluable sidekicks. i'm a very lucky lady to have so many friends and family members--and my amazing husband--standing beside me waiting to get tagged-in to help me. i truly couldnt do this without you all. i've assigned you, my tag team members, a totem, a visual stand-in -- the unicorn. seriously, when else would a unicorn be more appropriate? not just for 8-year-olds anymore.

hence, the unicorn cancer calendar!

as you can see above there was a special transformation event that took place to create the unicorn cancer calendar.

december is a very special month, as it's the first month of TKOing the hodge, AND because the december unicorns can shoot lasers from their eyes. i think those are special lasers that both kill cancer & make me feel like i am floating on a cloud... maybe they have ativan in them? (also, take note, the unicorn cancer calendar has a special wooge hanger -- sent by a very special boxing-tagteam-unicorn-member, ana.)

treatment

okay, all sillyness aside. how am i feeling? i wont lie, chemo treatment #1 was really, really hard. so much harder than i thought it would be. i'm a very physical person in the world -- kind of a super tough girl with great physical endurance in the face of pain & physical challenges. mountain bike races, road bike races, triathlons, multiday hiking trips, marathon yoga sessions, braving the streets of manhattan & brooklyn on madonna, my commuter bike, -- i can handle it all. but, chemo, it got me.

the day of my infusion is really hard. just post-infusion, i'm still feeling okay. it's after 6pm that things go to sick town for me. i'm spacey, woozey & could definitely use a walker in the evening part of the day. (not kidding.) getting up from bed to brush my teeth is a challenge: will i fall? will i get really sick & throwup? will my mouth be able to handle the intensity of teeth brushing? will the scent or taste of the toothpaste make me sick? if i dont brush, will that precipitate the dreaded mouth sores? did i eat too much food? am i drinking enough fluids? did i take all of my meds? especially the laxatives? (dave brought a multiday pill box home for me so that i wouldnt have to rely on memory for my pill schedule :) will i spike a fever & have to go to the emergency room? will i have an adverse reaction to my chemo drugs -- the very drugs that are supposed to be helping me? will i have permanent lung damage from chemo? will i have any heart damage? skin damage? neuropathy? the list goes on and on... 

okay, that's treatment day. tough. but the day after treatment day, so far for chemo rounds #1 and #2 its been pretty good. i think the steroids that i receive as part of my drug cocktail have me riding high on the day after. i feel like going out into the world & being a part of the rush and swirl of nyc -- of course without touching a single thing with my bare hands... and bringing a sars mask with me just in case the subway is crowded. i just cant risk coming into contact with germs or viruses.

it's the second, third, and fourth days after treatment that are the real full on tough days. on these days, the danger of intense nausea has largely passed, although i still take my helper drugs consistently, emend and my zo-friend (its actually called zofran, but zo-friend sounds so much nicer, right?) and of course, captain ativan, who i try to see sparingly because it is a narcotic grade drug that makes me a little spacey in the memory department. i am so tired on these days. a kind of tired i have a hard time describing -- its not a muscular tired... its like i'm tired in my cells -- a cellular tired. there's just no energy in my body. like none. a slow 20-minute walk will wipe me out for the day. i spend the days taking my anti-nausea meds & laying in bed or on the couch, with a small 10 to 20 minute walk out into the world.

but, then, there is the fifth day. the glorious fifth day. my body comes back online & i feel like being out in the world. hopefully this round's day 5 post treatment will bring me the energy to go for a run. my oncology nurse tells me that every treatment can vary & that the entire experience is supposed to worsen with each subsequent treatment. but, i'm holding out for a steady-as-she-goes experience. and, i also promise to be okay with the fact that i may just have to tough it out with progressively difficult treatments. its a small price to pay to stay in the world with all of you.

health is wealth (day 92)

i went for a run today.

a wonderful, blissful, delicious run.