December 30, 2009

7 down, 5 to go!

yeaaa! so excited that i've now finished more treatments than i have left! the end is totally in sight, i've already got treatment #8 and #9 in my planner...then only three more after that!!!

this weekend was fantastic, two of my closest friends from college drove up to visit from new york and massachusettes. the weekend was very similar to a high school sleepover...lots of laughing, gossip, shopping, board games, fun! then one of my friends was able to stay an extra night, so we went out to a nice dinner, out for coffee, and then she was able to take me to treatment tuesday. it was wonderful.

not a whole lot is new and exciting on the cancer front. things really have become so routine, and there aren't many decisions left to make for this chapter of treatment...just have to get through it. i feel very, very fortunate that i've had so few side effects from treatment. aside from the day of and three days after each treatment (which are getting much, much easier) i really notice no effects of treatment. in fact, i feel better than ever in between treatments...which is fantastic, but it makes the process of convincing myself to go back every other week a little more difficult.

overall i feel so fortunate for everything. and, i can actually start to see life after treatment which is really, really exciting! i know i'll have challenges in the next few years as i learn to live after cancer, but i think i'm ready for it.

December 26, 2009

life is fantastic...

it's funny, i never thought that during cancer treatment i'd be able to say that life is better than it ever has been. but, it is. physically, i feel better than fatigue, no more frustration of lots of random symptoms that no one could add up. but aside from just the physical feeling of wellness, i really think my life is exactly where it's supposed to be now more than it ever has been.

i wake up every day with a new energy for life. i've found a new energy for setting goals and really working to achieve them. before fatigue took over my life, i was training for got so bad that i didn't work out at all for the last year. and for the last month or so i've been working out regularly on my good week. it's not where i used to be, but i remember my oncologist telling me that he'd get me back there...and i think we're on our way. i plan to sign up for the tri for a cure, and start really training in the spring when i can fully recover. oh, and i got a yoga class for christmas which i'm really excited about. i've wanted to do it forever, but i never have.

another thing i put on hold when i was diagnosed was school. i had enrolled part time for practicality sake...i could work full time and do school part time. i didn't want to take four years to start my career with my MSW, but it made sense. since all this happened, i realize not everything in life makes sense, so i've decided to throw practicality out the window and start my MSW full time in the fall. i don't know how i'll make it work with finances and health insurance, but i know one thing...i'm not waiting on things i want anymore, it's time to make things happen.

i also feel so much more appreciative of everything and everyone in my life. my family, friends, cancer fighters (aka my medical team), and my students. i wake up every day excited to know that it's filled with people who add so much to my life and that i can work in a position that teaches me so much and gives me so many things to be grateful for.

it's odd to think that a disease that's to awful can do so much good. so, thank you cancer for the opportunity to be on this journey. i'll be happy when you're gone for good, but i'll always appreciate the experience you gave me.

December 22, 2009

three cycles = DONE!

not a whole lot in the way of updates for finishing this cycle. it's the halfway mark, though, so that's quite exciting! it's hard to put into words how excited i am to shed all these restrictions and get back to life. my wonderful nurse told me to make a list of things i'll do when i feel amazing again...i'll post it here when i get more things on the list. i was always hesitant to make a 'list of things to do before i die' because i didn't want to face my own mortality. well, that's been done, and now the name of the list seems inappropriate...i'll call it my 'list of things to do while i'm living', which i think more accurately reflects my new perspective on life. and, as excited as i am to get back to life, i'm excited to get back to life because of this experience and everything it's given me...i have a stronger sense of purpose for being here, and i'm so excited to see where life takes me next.

also, because i know many of my fellow hodge warriors follow this blog, i'm going to take a little time to add my new found wisdom on managing side effects. it seems my sole side effect of ABVD has been nausea. so bad at first that i'd end up in tears just because i was so overwhelmed. it was the side effect i feared most, and for good one ever deserves to feel that sick. for the first four treatments i added medication to medication to try and control the nausea, and it got worse and worse with each treatment. until treatment four, when i asked the lymphoma expert at dana farber to give me something new to try. basically, what it melted down to was that a lot of the medications do the same thing, and so they have no additional benefit, and in fact, may make it worse because they each have their own side effects (zofran headaches, anyone?). i also decided i may have been dehydrated, so i figured i'd add water to my anti-nausea line up (it can't hurt, right?). since then, i've had two treatments with only the anti-nausea medications in the IV drip and one additional medication at home, as well as three liters of water a day for five days (day before and three days after). it might be chance, but i have had significantly less nausea. i think i'm on to something...perhaps less really is more, and drinking lots of water is the best and easiest thing to do. i got so terrified to wean back on medications fearing it would make it worse...until i realized i couldn't keep up the way it was going, so i'd try anything. i'm so glad it's to hoping it keeps working.

and, in case anyone is wondering...75 days until the end of this chapter of treatment!

December 14, 2009


so here it is...the mid-treatment update!

as you all know, i had a scan after the second cycle, and there was a little gray area as to whether it was negative or not. my oncologist called the day after our appointment and said that he had it re-read by the head of nuclear medicine because he couldn't convince himself that there was any disease left, and that they agreed that it was a negative scan, but that we should send it to dana farber for the final call. so, i went to dana farber today, and we discussed the scan and what to do with the rest of treatment. they said that my scan definitely falls into the 'negative interim scan' group as far as prognosis. this means that my chance of staying in remission went from about 85% to 95%...which is just about as good as it gets. so, things look really good!

the recommendation for treatment was to go the full six cycles instead of just four, and then head to radiation. they said that four and radiation would probably be enough, but that going the full six cycles would really ensure that we've done everything that we can do now...and hodgkin's is much more treatable the first time around. you can't ever do the first line treatment again, and the second line treatment is high dose chemotherapy with a stem cell transplant. so, given the initial size of the mass, we'll go the full six with radiation to be sure we don't have any regrets. that said, they made it clear if there's any indication that i can't tolerate any more chemotherapy, we can stop anywhere after the fourth cycle. that was just added reassurance. i'm sure i'll make it, but it's nice to know that there's a safety net there. i'll consider the last two cycles my insurance policy.

and, as it relates to whether or not my body can tolerate chemotherapy.... one of the drugs i get is notorious for causing lung toxicity, so we're carefully montiored with pulmonary function tests. i had one at the start, and had another one last week. instead of having a decrease in pulmonary function, i've had a 10% increase! i'll hope it continues, and i'll enjoy the little victory - we all know how competitive i am!

tomorrow is treatment six...halfway! physically, it gets tougher from here...but mentally, i really think i've made it through the toughest part...and that feels good!

December 6, 2009

cancer awareness.

in our society, it seems as though our best coping skill for dealing with our fear of cancer is to distance ourselves from it. whether that means following a 'cancer prevention diet' or buying everything that's pink to 'raise awareness'. we have distanced ourselves from cancer so well that we don't have much awareness at all. unless, of course, awareness means that we know that pink is the color ribbon that represents breast cancer. or that lance armstrong fought cancer, and won.

if we really focused on raising awareness, that's when we could quell a lot of fear and lessen the distance between us and cancer. why is it important? because the chance of developing some type of cancer in your lifetime is about 1 in 3. and, i can tell you from this side that cancer is a lot scarier when you don't have it...because once you do, you're forced to understand it and become very close to it.... the worst part of this cancer experience? the initial diagnosis. you have to take a huge leap in a very short time to close the distance we've created as a why not lessen the distance for everyone in hopes that no one ever has to take such a huge leap? here's a little bit of the awareness i wish i had before cancer...

all the time we see 'for a cure' after something related to cancer, which leads us to believe there is no cure for cancer. there are over two hundred types of cancers...and, in fact, all of them are potentially curable, although it may be extremely rare in some. quite a few cancers, like hodgkin's, are treated with curative intent. cancer is really just the word used for a process where cells don't live and die as they doesn't mean 'a disease that is always fatal'. also, early detection saves lives in every cancer, and it's possible with any's just not as easy as a self-exam in lots of cases.

which is the next point.... we've come to fear radiation exposure in our society, and, while i'd never say it's safe, it's often necessary. people are shocked to know that the mass i had, which was the size of a grapefruit, couldn't be seen or felt....which it couldn't, because it's behind my ribs. the only way to detect it was a chest xray, which i was told was unnecessary radiation for a healthy twenty something. sure, the chances of finding cancer were small, but the radiation from that xray is nothing in comparison to the radiation i'll recieve to treat it. radiation exposure can be dangerous, but it can also save lives.

and, it should be said that cancer can happen to anyone. i've heard so many times that no one would look for cancer in a healthy twenty something. true, the chances are so small, but here i am...twenty four, and i'm in otherwise excellent health. cancer doesn't always make you sick, or present in ways we often associate it with. in fact, everyone i've met who's had hodgkin's was a healthy young adult at diagnosis (and they all are now, too). no one should ever feel that because they're healthy that they won't get cancer, or, that because they aren't healthy that they will. cancer is a crazy and unpredictable disease. no one should live in fear, but no one should live in the dark, either.

aside from the association of cancer and dying, the second strongest is probably cancer and it's treatment. our society hasn't done a good job displaying an accurate picture of all cancer treatment. it seems that we only ever see the worst case scenario. there are so many different types of treatments for cancer...chemotherapy, surgery, radiation, immunotherapy, hormone therapy...and i'm sure the list goes on. chemotherapy is easily the most feared of them all. i've said this before, and i'll say it again...each cancer has a different chemo regimen, and mine is supposed to be one of the 'easiest'. i have treatment every fifteen days...i have side effects for four days (including the day of treatment), and then have ten good days. on the good days, you wouldn't know i was in the midst of cancer treatment. it's not easy, and it's not fun, but it's not nearly as bad as i thought it would be. we shouldn't be primed to fear treatment...because it sure beats the pants off the alternative to having treatment. and, as the nurses in my center always say, 'it's temporary'.

cancer isn't easy, but, it's a reality for so many people, and it will be a reality for so many more people in their lifetime. i hope one day we see ads on television that really promote awareness. you can't fight fear with avoidance. you can, however, fight fear with awareness. awareness that comes from really understanding what it's like to live with cancer, through cancer, and live on the other side of cancer. it's not easy, but ask any of the ten million cancer survivors in this can be done.