February 27, 2010

SO excited!

10 days!

that's it! only TEN days until the LAST 'infusion'!!!!!

to put it into perspective, it's been one hundred and fifty six days since my first treatment, and two hundred and nineteen days since i found out i had cancer. lots of people laugh when they hear that i have the exact count, to the day, of everything. trust me, if you had cancer, you'd know exactly how many days it was until every milestone. i could easily tell you every major date off the top of my head, and i've never remembered dates...these are ones you don't easily forget.

February 24, 2010

11 down, 1 to go!

i've nearly done it...only ONE treatment to go! it's unbelievable, i never, ever thought i'd make it to this point. another hodge warrior once told me this is like a marathon, and the only way to get through it is to put one foot in front of the other, and not think of how many miles you have left to go. it was one of the most fantastic pieces of advice i've recieved...and, now that i'm in the last miles, i just have to make that last push to the finish!

treatment was quite an ordeal yesterday.... i went to the hospital for a pulmonary function test bright and early to continue to monitor any possibility of bleo toxicity. my dad came, and he likes to watch the monitor and cheer me on...he's the best. the results were fine, exactly the same as the last one. so, it's dropped a bit since we first started, but remained consistent in the last couple months...so, i just hope once i'm out of treatment i get back to where i was. my actual lung capacity is better, though...which i imagine is because i no longer have a grapefruit size tumor pressing on my lung. my cough and respiratory symptoms are gone now, too, so my oncologist isn't concerned that we've created bleo toxicity. so, we finish it all out with the bleo. what a saga that was. although, i'm very confident that making it into such a big deal (with the growth factors/bleo toxicity) was what i needed to do. i sincerely thanked my oncologist for treating me without growth factors yesterday, and he told me that he thinks we did the right thing. i know if i hadn't brought it up, i'd have been treated with them, and so, it just reinforced how critical it is to be involved in every decision that's made about your own care, and to be an advocate for yourself. that said, being an advocate takes work. you should never just demand something because you 'feel' like it's the right thing to do...being a good advocate means reading academic research, asking your doctors lots of questions, calling in other opinions/experts when needed, and evaluating your own situation apart from the statistics. it's a big job, and it's so important.

anyways...my counts were really low this week. my red blood cells and platelets are still fine, but my total white blood count and neutrophils were real low. my oncologist decided to just push forward though, as they've been pretty good up until this week and our agreement was to treat on time, regardless of counts...and, i'm almost at the end, in a couple weeks my count will be on the mend. of course, when i walked out back, the nurse starting my treatment (my nurse was at lunch) was really concerned and asked me if they had talked to me about my counts. as a side note, it always makes me feel really, really good when they do this...just shows how many checks there are in place so nothing gets missed.

so treatment began, and all my drugs came out except the really big bag (DTIC, for all you hodgers). when my nurse came back from lunch she went to investigate where it was. turns out, when they went to mix the drug they 'weren't happy' with how it looked, so they discarded it. however, they didn't have any more on hand. so, they had to call the hospital for a rush delivery. turns out, when DTIC is exposed to sunlight it becomes inactive, and turns pink. well, it mixed and looked pink...they don't know how or why it got exposed, but they didn't want to use it. so, i had to wait almost an hour for the delivery, and then we were on the way.

and, thank goodness for nurses. i've become pretty close with a few of them, and they never fail to be the most amazing, supportive, fun group of people in the world. and, yesterday, they must have been the most entertaining they have ever been. one of my favorite nurses, who doesn't usually work tuesdays, was covering for someone, so she was added to the mix, which made it even more wonderful. i can't say enough good things about them...they are my heroes.

so that's all i've got this time around. no nausea yet...took ativan again, which seems to be doing wonders (thanks, jenny), and i plan to just try and stay ahead of the nausea and see if i can make it through as easy as the last one. next week i head to boston for a consult with the radiation oncologist who's an expert in radiation for the hodge. then later in the week i have a consult with the radiation oncologist up here. hopefully i'll be able to have radiation done here, but if the expert tells me that it needs to be done in boston with his team, then i'll probably end up in boston. radiation isn't anything i want to take chances with. but, we'll see. so, another busy week, then it'll be the day of my last treatment before i know it! SO excited!

February 19, 2010

will there ever be a balance?

i've realized, as of late, that i really do live a double life. one week i play the role of cancer patient, and the next week i play the role of a busy, relatively 'normal' twenty-something. some weeks the lines are more blurred than others, but lately, it's been quite separate. in fact, i sat down to write this post almost a week ago, but got so busy with my week off from cancer that i haven't had time to sit down again until now...

it's an interesting balance. in the beginning, cancer was my primary focus. for the first two months before finally being diagnosed, there was no balance...it was all cancer, all the time. physically i was at appointments all the time, but i was also mentally consumed thinking about everything and trying to wrap my head around all of it. it was so draining that i never thought i'd survive the journey ahead. the first couple months of treatment were a little more balanced, i'd go to work in between treatments, and didn't have as many appointments, but i still thought about cancer and everything i had to deal with a lot more than i thought about everything else in my life. somewhere around the halfway point, it started to become a fifty-fifty balance...i'd think about cancer a lot on my treatment week, and wouldn't think about it too much on my off week.

and, that brings us to now.... there's hardly a balance, i think about cancer on the day of treatment, and a little the days after, but my main focus is on everything else in my life. even on my recovery days there's not a lot of focus on cancer. i think about how i feel miserable, but it's not the same anxiety causing, 'what ifs' mindset. this past week, while recovering, i was making appointments for grad school, setting up my internship, and preparing to file my taxes. and, on my off week, i've been so focused on getting things in order for grad school in the fall and on work that i haven't really even thought about cancer.

mentally, i'm in a much, much better place than i have been since this cancer business began in july. however, i'm starting to wonder if i'll ever find a balance, or if i've found it...and, i also wonder what on earth the new normal will be.

it's unreasonable to try and fully focus on other things. why? because i have cancer (or had cancer), and it will always be a part of my life and who i am. you don't just get through cancer treatment and move on. i'll have a lot of follow up appointments, and i'll always have worry in the back of my mind. it gets better with time, but i have to learn to accept everything that goes with it from this point forward. with cancer you don't get to forget...and, thats normal. i don't think i'd want to forget, even if i could, i just want to be able to focus the thoughts on something productive...like taking the best care of myself i can, living every day to the fullest, and using my experience to help others.

perhaps i've reached the place where i should be. i don't focus on cancer too much outside of the doctor's office, and i always said i wanted to leave the details to my medical team. i've been able to push forward in my life outside of cancer...socially, academically, professionally and personally. i haven't let cancer drag me down, or throw my life off course. in fact, i'd say my life is more on course than it's ever been. i feel a much greater sense of purpose, i've created incredible relationships with people i wouldn't have in my life if it weren't for cancer, and i've shed my fear of taking risks. is it possible to come out of cancer better than when you went into it? i hope so.

it's safe to say cancer has totally changed my idea of balance. and it's probably a good thing, because i never did well with balance before anyways...

February 10, 2010

five cycles = DONE!

well, folks, we're closing in on the last and final cycle! and, i'm excited to report that this treatment was far less eventful than the last one! so, here are a few updates...

i saw my oncologist, who really didn't have much to say aside from telling me how well i'm holding up and reminding me that i'm almost there. he also said my blood looked 'perfect'. it's, of course, not perfect for someone who isn't in treatment, but it's really nice to know that after going through four and a half months of treatment that my red blood cells and platelets are holding tough. my white blood cells are taking a little bit of a hit (which is totally expected), but my overall white blood count was within normal range, so that's a good sign. i also told him that i needed a little motivation, and asked him to show me my chest x-ray and give me a 'pep talk' about how treatment was working. he laughed a little, and told me that he would do whatever he had to do to help me get through these last ones. so, he pulled up my pre-treatment chest x-ray and compared it to the one i had two treatments ago. he pointed out the difference (which doesn't need much pointing out...anyone could see the change), and said "looking at this from the front, it could easily be missed". he said it's when you look at the side view that you could see there's something going on that shouldn't be there. however, it's such a dramatic improvement, and he reiterated how it's a really good sign, and he's very happy with the way things are going. he's a great doctor, and i so appreciate him taking the time to give me a 'pep talk'...it really helps to get through the tough days knowing that what i have to go through isn't without purpose. it still sucks, but mentally i can tough it out a lot better knowing that the physical crap is just something i have to get through to get better.

treatment itself was uneventful. no crazy chills, no instant nausea, no headaches. and, i can't say anything else without giving serious credit to the most amazing nurse in the entire world...jenny. she's been with me since day one, and seen every single part of this with me - the good, bad, and the ugly (often really ugly). i wouldn't make it through any of this without her. she's seen me go through treatments relatively easily, and recently, she's seen me have a really hard time. i'm a little stubborn about taking medications (never in my life have i taken more than tylenol...and i even fight that). however, jenny was somehow able to break through my stubborness (it took her several months), and got me to take ativan yesterday during my treatment. i had a little bit of my normal queasy feeling, but i have had no nausea yet...which is a serious improvement from last time, when i couldn't even get out of bed. i've eaten meals normally since i came home, slept well, and now i'm sitting up typing this. i told her she was allowed to say 'i told you so', and not too long later, i got it...in big letters 'TOLD YOU SO'. she earned it. she earned every little bit of throwing it in my face that she was right and i should have listened to her. and, you know what? i don't know of many people who wouldn't totally piss me off if they said 'i told you so'. she will forever have a place in my heart as the one who really pulled me through the hardest thing i've ever had to do. every single day i think of how thankful i am that i 'landed' in her chair on the first day of treatment...i can't imagine having to do this without her. i hope everyone is as lucky as i am to have a nurse, and a friend, like jenny.

so, here's to hoping this one is an 'easy' one. only two left after i get through this one...yay! and, many of you have been asking what's next. well, radiation. i was told yesterday that around the time i'd be going back for treatment i'll get started with the radiation team. we have to wait for my counts to return to normal (which shouldn't take too long), and then i have to go through scanning, mapping and all the planning. and, i have to go back to dana farber in boston for a radiation consult with one of the leading experts in hodge radiation. so, there will be lots to do once i finish up that last treatment...but i have to get there first! that light at the end of the tunnel is totally illuminated now!

February 5, 2010

what to say?

lately, there's been a lot of talk about 'things not to say to a cancer patient' on the forums.... it's a tough topic, because from the outside of the cancer world, it's hard to want to be there, and be the most supportive person you can be but to not always know how...and from the inside of the cancer world, it's hard to tell people what we're dealing with and how we want to be supported. really, there's no easy solution, and i can say from where i'm standing, in the midst of treatment, that we cancer warriors are a tough crowd. we want everyone to understand us, but very few people do...and that's a hard thing to accept. so, instead of ranting about how people don't 'get us', i'm going to do my best to help those of you outside the cancer world understand what we mean. here are the three things i hear most that are the hardest to respond to...

"at least you got a good cancer"
first of all, getting any cancer sucks. it doesn't matter what kind - you'd know exactly what i mean if you ever had to sit there and listen to a doctor tell you that you had cancer. and, as good as this cancer is, i still need chemotherapy and radiation. yes, i am very happy with the high cure rate, but i can assure you, it's no walk in the park to earn that prognosis - you aren't just handed it when you're diagnosed with the hodge...you have to work hard for it. and as good as this cancer is, people die from it. in fact, the first time i ever heard about this cancer was when i was ten...and a classmate died from hodgkin's disease. so, join me in feeling fortunate that i have a cancer that usually responds well to treatment, and then join me in hoping that statistics are on my side. but, please, don't tell me i got the good kind of cancer.

"you're so strong, i couldn't do what you do"
until you've been diagnosed with cancer, you have no idea what you can do. the very moment a doctor tells you that you have cancer, everything changes. it's not about strength, it's about something deep inside all of us...and we all have it. i didn't think i had it, and then i realized the choices were, quite literally, 'do or die'. that doesn't make me strong, it makes me the same as every one of you. if someone told you that you could run away or stand still and get shot, what would you do? run? that's what i would do, too. i can almost guarentee i'm no stronger than anyone else, i've just been forced to uncover what i have inside me to get through this. if you had to do it, you would, too, and you'd understand exactly what i mean.

"how do you feel?"
this is a tricky one, because i know you mean well and really do care how i'm feeling. here's the problem...i probably won't really tell you how i'm feeling. why? because lots of times when you ask i feel miserable, and i refuse to always tell everyone how terrible i feel. the only people who need to hear how i feel are my doctors and nurses...the rest of you will be spared the less than pleasant details of dealing with the side effects of cancer treatment. so, instead of asking me how i feel, if you really want to know how things are going, ask about what's going on in my life.... that's the other thing, i do have a life aside from the cancer business, and there are lots of exciting things that happen in that life that have nothing to do with cancer. i think it's hard for people to not focus on the cancer, but trust me, i really don't want to focus on it and it helps if you don't, either.