so now that i have met with the doctors at dana farber, and scheduled my treatments, one big question people have asked is what about work. it's already stressful enough being in your 20s, trying to start your career and figure out how you're going to be successful, not to mention in this economy when your friends are being laid off or having their hours cut and cant find new jobs, so having this major road block throw up in my path doesnt help.
so i happen to work for a unique company. we are a private, family owned, marketing agency. we deal with large scale corporate events and digital marketing (websites, animation, print, etc) i work in account management and also i also happen to work on the marketing side as well. this job is very much reactive, i never really know what i might be working on when i come into work in the morning, and that's one of the reasons i love my job. it's fun, the people are fun and creative and it's just a very vibrant place to work. a job like this isn't predictable.
based on the recommendations of my doctors, as well as talking with friends and family, i will be taking a short leave of absence from my job, just to see how my body handles treatment. i've been told the first month can be the hardest, just because you dont know what will happen, i could be sick the whole time, or i could be fine. either way, my concentration and focus right now needs to be on myself and my health. if there is one time to be selfish it's now. so basically i will go on short term disability, and once my treatment gets going i will decide what i can handle in terms of work. no matter what i will be out of work at least once ever other week for the next six months. after discussions with my boss, it will very much be up to me as to what i want to do. as i said, my job can be unpredictable at times, but i'm learning so is life!
everyone at my work has been so supportive and downright amazing. i basically had to take two weeks off when i was going through all these tests and go to all these different doctors, and never for a moment did i have to worry about the security of my job. at times like these you realize what is important and my boss and coworkers know that. this situation is unique and one that i dont think my company has dealt with, let alone my coworkers.
i think i'm the type of person who wont be content just sitting around being sick all day for the next six months. i'm going to want something, maybe as a distraction, or many just as a sense of normalcy. my doctors have said many people work through treatment, it's really up to me as to what i want to do. so as with everything in my life right now, i'm taking it one step at a time and we will see how it goes.
Wednesday, April 28, 2010
Thursday, April 22, 2010
just a little pinch!
oh the fun i had in the three week span from the first doctors visit to when i landed at dana farber to begin treatment. i could get to milton hospital with my eyes closed at this point we were there so much. i still believe i am the youngest patient that hospital has seen by at least 30 years. and for every test and procedure i had to get done, it somehow involved getting blood drawn or getting an IV. and they must teach nurses this in school to say "just a pinch!" when the needle goes in. i really would like them to switch up the sayings, because it make me expect it even more. i became a human pin cushion for a minute there and i have the bruises to prove it.
the first test was the CT Scan. this test requires prep! those are always the most fun. prep just means anything from not eating or drinking, to drinking some special solutions, to god knows what else. for this scan i had to drink two large containers of barium liquid. this is so the machine can see my insides better when i'm in there. let me describe the taste for you. hmmmm....imagine like a watered down strawberry smoothie, but thick. i tried my best to imagine it as some sort of cocktail, perhaps i nice glass of chardonnay, but that crap tastes...well, like crap. and i had to drink TWO OF THEM. and yes i made Chris try it.
then after not eating or drinking other than the evil drink, i go in for the test, they inject you with a contrast that gives you the distinct sensation that you are peeing yourself. and its not like they dont warn you, they tell you like 3 or 4 times, but every time i have to ask out loud "am i peeing myself?" i wasnt. but those were the first images of lumps the doctors saw. TWO on my neck and evidence of some swelling in my chest.
off to the needle biopsy!!! this was in a surgeon's office. also this was after my doctor's office called and said "you need to go to milton hospital and get this biopsied...NOW" awesome. so you can imagine my calm and comfort. so, without any numbing, or prep at all the doctor placed a needle in my neck, which chris later claimed i "took like a champ" and removed some cells from the lump. oh and instead of 'just a pinch' i got "this is going to feel like a mosquito bite...a big mosquito" thank you dr. k.
when the results of that biopsy came in, they were 99% sure of what it was, but needed that extra 1% to take action. "so looks like we are going to have to do a little day surgery, go in and get a piece of it" super! when can i do this? tomorrow? great, cant wait. so they put me under general anesthesia and made a small (even though it still looks rather large and unattractive) incision in my neck.
the surgeon called the next day and confirmed the results he had already prepared me for. nodular sclerosis hodgkin's lymphoma. time to meet with the oncologist...
so i met with dr. sarah may in her quincy office. filled out A LOT of paper work and had an interesting time with the family history (it can be pretty frightening to see it all on paper like that) she went over the disease and treatment options and made recommendations for oncologists at dana farber. also at this appointment it was recommended to move forward with finishing 'staging' this included more blood work (yay!) and a couple of tests at the hospital.
so first up was a PET scan which, that's to my handy dandy lymphoma book, i learned is:
then i had to get a MUGA scan:
then to finish up, i had a pulmonary test just to test my lung functions. i passed with flying colors, because let's face it i'm an athletic specimen. but seriously i questioned this after feeling like i was going to pass out after the short breath test. i cant imagine how really out of shape people or the elderly do this.
so after all of this, i met with my new oncologist at the dana farber cancer center, Dr. Lacasce, who is really smart and down to earth and really knows her stuff. my course of treatment will be 6 months of chemotherapy, which i will get once every other week at dana farber in boston, starting on may 6th. it should take a few hours every time, so i will be getting a lot of reading done, as well as some prime people watching, a favorite pastime of mine.
the first test was the CT Scan. this test requires prep! those are always the most fun. prep just means anything from not eating or drinking, to drinking some special solutions, to god knows what else. for this scan i had to drink two large containers of barium liquid. this is so the machine can see my insides better when i'm in there. let me describe the taste for you. hmmmm....imagine like a watered down strawberry smoothie, but thick. i tried my best to imagine it as some sort of cocktail, perhaps i nice glass of chardonnay, but that crap tastes...well, like crap. and i had to drink TWO OF THEM. and yes i made Chris try it.
then after not eating or drinking other than the evil drink, i go in for the test, they inject you with a contrast that gives you the distinct sensation that you are peeing yourself. and its not like they dont warn you, they tell you like 3 or 4 times, but every time i have to ask out loud "am i peeing myself?" i wasnt. but those were the first images of lumps the doctors saw. TWO on my neck and evidence of some swelling in my chest.
off to the needle biopsy!!! this was in a surgeon's office. also this was after my doctor's office called and said "you need to go to milton hospital and get this biopsied...NOW" awesome. so you can imagine my calm and comfort. so, without any numbing, or prep at all the doctor placed a needle in my neck, which chris later claimed i "took like a champ" and removed some cells from the lump. oh and instead of 'just a pinch' i got "this is going to feel like a mosquito bite...a big mosquito" thank you dr. k.
when the results of that biopsy came in, they were 99% sure of what it was, but needed that extra 1% to take action. "so looks like we are going to have to do a little day surgery, go in and get a piece of it" super! when can i do this? tomorrow? great, cant wait. so they put me under general anesthesia and made a small (even though it still looks rather large and unattractive) incision in my neck.
the surgeon called the next day and confirmed the results he had already prepared me for. nodular sclerosis hodgkin's lymphoma. time to meet with the oncologist...
so i met with dr. sarah may in her quincy office. filled out A LOT of paper work and had an interesting time with the family history (it can be pretty frightening to see it all on paper like that) she went over the disease and treatment options and made recommendations for oncologists at dana farber. also at this appointment it was recommended to move forward with finishing 'staging' this included more blood work (yay!) and a couple of tests at the hospital.
so first up was a PET scan which, that's to my handy dandy lymphoma book, i learned is:
Positron emission tomography (PET) is a nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Images of tracer concentration in 3-dimensional or 4-dimensional space (the 4th dimension being time) within the body are then reconstructed by computer analysis. In modern scanners, this reconstruction is often accomplished with the aid of a CT X-ray scan performed on the patient during the same session, in the same machine.basically this was a crazy situation. like they had to administer the contrast with a steel drum and i couldn't be around children or pregnant people for at least a day because i would be radioactive. WHAT!? no, seriously they gave me a little piece of paper that said as much (see below). marc, my friendly, rather large russian fella, was there as my radiology tech, chris had a funny line: "i feel like i'm on an episode of 24 right now" marc really tried to hold in his laughter, but i mean this was comedy gold. oh and i had to drink another two bottles of that liquid barium crap, i only drank one though, marc said it was ok.
then i had to get a MUGA scan:
A MUGA scan (Multi Gated Acquisition Scan) is a time proven nuclear medicine test designed to evaluate the function of the right and left Ventricles of the Heart. It is also called Radionuclide Angiography, as well as Gated Blood Pool Imaging. This modality uniquely provides a Cine Image of the beating heart, and allows the interpreter to mathematically determine the efficiency of the individual chambers of the heart. MUGA scanning may be a valuable adjunct to the Echocardiogram.another test that i couldnt be around children or preggos. i asked why it was ok for me to have it, and they said something about the immune system and developmental blahblah...doesnt seem 100% safe to me, but who the hell am i?
then to finish up, i had a pulmonary test just to test my lung functions. i passed with flying colors, because let's face it i'm an athletic specimen. but seriously i questioned this after feeling like i was going to pass out after the short breath test. i cant imagine how really out of shape people or the elderly do this.
so after all of this, i met with my new oncologist at the dana farber cancer center, Dr. Lacasce, who is really smart and down to earth and really knows her stuff. my course of treatment will be 6 months of chemotherapy, which i will get once every other week at dana farber in boston, starting on may 6th. it should take a few hours every time, so i will be getting a lot of reading done, as well as some prime people watching, a favorite pastime of mine.
Wednesday, April 21, 2010
so it's the good kind?
so after the initial shock of my surgeon telling me he thought i had hodgkin's lymphoma, my first question was "is this the good kind?" and if you are a fan of curb your enthusiasm you might remember this episode (**warning there is swearing***) and have more of an appreciation for that question.
so here is my first educational blog.
there are two main types of of lymphoma: non-hodgkin's and hodgkin's. according to the leukemia and lymphoma society:
i dont know if that helps distinquish the two at all, but all i know is when i was doing my scary internet research on the two diseases the term "life-threatening" was associated with non-hodgkins, and not so much with hodgkin's.
from what my doctors tell me and what my research has taught me is that hodgkin's lymphoma is completely treatable. i have caught it early and i am taking all the right steps to begin treatment to beat this thing.
first steps: finish staging. the first oncologist i met with sent me for a series of tests to finalize my staging. she believes that i am stage two A. basically because i had two lymph nodes as well as some swelling of my chest lymph nodes. what are these fun tests? PET-scan, a heart test, and a lung test. the PET-scan is to get a better look at my insides 'below the belt' to see if there are any other lymph nodes floating around in there. the heart and lung test are to see how healthy i am before starting treatment.
what is treatment? well that was the answer i could just get out of people. the doctors kept saying 'medicines' ok....what kind of medicines? i wanted to be like ok am i going to lose my hair or what? basically what my treatment will be is chemotherapy with a possible round of radiation. the chemo will take about four months to complete, and then if needed, i will begin radiation after a month break.
what is chemotherapy? basically drugs that are given intravenously. my course of treatment will be the ABVD chemotherapy regimen, which is the standard treatment of Hodgkin's disease in the US. The abbreviation stands for the four drugs adriamycin, bleomycin, vinblastine, and dacarbazine.
what can i expect? probably nausea, fatigue, hair loss...you know, all fun sounding stuff.
my doctors have recommended me take the first month of my treatment off from work since i wont know how my body reacts. if i decide i cant return to work right away, i wont, if i can, i will. i'm not making any decisions on that right now. taking it one day at a time.
so the positive of this is yes, it's the good kind. very treatable. i live in one of the best cities in the world for cancer treatment and research, i am in good hands, i will get through this.
so here is my first educational blog.
there are two main types of of lymphoma: non-hodgkin's and hodgkin's. according to the leukemia and lymphoma society:
Lymphoma starts with a change to a lymphocyte. The change to the lymphocyte causes it to become a lymphoma cell. The lymphoma cells pile up and form masses that gather in the lymph nodes or other parts of the lymphatic system. Hodgkin lymphoma has characteristics that distinguish it from other diseases classified as lymphoma, including the presence of Reed-Sternberg cells. These are large, malignant cell found in Hodgkin lymphoma tissues and named for the scientists who first identified them.Non-Hodgkin lymphoma (NHL) represents a diverse group of diseases that are distinguished by the characteristics of the cancer cells associated with each disease type.
i dont know if that helps distinquish the two at all, but all i know is when i was doing my scary internet research on the two diseases the term "life-threatening" was associated with non-hodgkins, and not so much with hodgkin's.
from what my doctors tell me and what my research has taught me is that hodgkin's lymphoma is completely treatable. i have caught it early and i am taking all the right steps to begin treatment to beat this thing.
first steps: finish staging. the first oncologist i met with sent me for a series of tests to finalize my staging. she believes that i am stage two A. basically because i had two lymph nodes as well as some swelling of my chest lymph nodes. what are these fun tests? PET-scan, a heart test, and a lung test. the PET-scan is to get a better look at my insides 'below the belt' to see if there are any other lymph nodes floating around in there. the heart and lung test are to see how healthy i am before starting treatment.
what is treatment? well that was the answer i could just get out of people. the doctors kept saying 'medicines' ok....what kind of medicines? i wanted to be like ok am i going to lose my hair or what? basically what my treatment will be is chemotherapy with a possible round of radiation. the chemo will take about four months to complete, and then if needed, i will begin radiation after a month break.
what is chemotherapy? basically drugs that are given intravenously. my course of treatment will be the ABVD chemotherapy regimen, which is the standard treatment of Hodgkin's disease in the US. The abbreviation stands for the four drugs adriamycin, bleomycin, vinblastine, and dacarbazine.
what can i expect? probably nausea, fatigue, hair loss...you know, all fun sounding stuff.
my doctors have recommended me take the first month of my treatment off from work since i wont know how my body reacts. if i decide i cant return to work right away, i wont, if i can, i will. i'm not making any decisions on that right now. taking it one day at a time.
so the positive of this is yes, it's the good kind. very treatable. i live in one of the best cities in the world for cancer treatment and research, i am in good hands, i will get through this.
wait-what?
that was basically the reaction i had when the surgeon first said the words 'looks like hodgkin's lymphoma' he said it so casually, like 'ya i had a turkey sandwich for lunch' i remember sitting there and in my mind just saying 'wait-what...is he telling me i have cancer right now? am i sitting here on my lunch break hearing that i have cancer and the treatment is chemo and i have to lose my hair, and oh wait we are getting married in five months and have non refundable deposits and i have a job and student loans and wait-WHAT?!'
but i didn't have a big reaction on the outside. i've never really been big on emotions, some might see this as bitchy, snobby, maybe strong, i dont know. i've just never been one to like cry at commercials, not big into hugs, any invasion of personal space really, i always get uncomfortable when my fiance makes some big romantic gesture that i know most girls long for, hell, when he proposed my first reaction was "i think i'm going to throw up" that's just me.
maybe that's where i should start. me. most of you know me because i have either shared this link with you, or a friend of a friend sent this, but for those randoms out there in cyber space, let me catch you up.
my name is jenn, i am a perfectly healthy, (well, other than the cancer) 27 year old female. i grew up in stoughton, i am still friends with people i went to high school with and i like it, i think i'm pretty funny. i love my family. i have an older sister and brother, my mom is one of the strongest women i know, she's a little nutty but i like it, and my stepdad david should have his own reality show. oh and my mom has a pug baxter who is currently suffering from Lyme disease (it's been a rough month for my mom and her babies) i live with my amazing fiance chris in a lovely apartment in wrentham. we met in college and he is my best friend, we have been engaged since august 2009 and were planning an october 2010 wedding. i like to workout, shop, drink wine, try new restaurants, cook, clean, go on facebook, etc. pretty normal life.
in march 2010, i was doing my usual tuesday night routine, came home from work, got into my pajamas, washed my face, made dinner, cleaned up and sat down to watch the newest episode of american idol. there must have been a bruins game on or something because chris was in the bedroom. i was randomly rubbing my neck, and felt something weird, like a lump or something. usually i dont get too concerned with things like this, but something made me alarmed and i went in and had chris feel it. he said he didnt think it was anything, we all have weird things in our neck. i kind of forgot about it for a week or so and then one friday night i was out to dinner with my dear friends jenn and christy jenn happens to be a registered nurse and i asked her to feel the lump. she felt it, compared it to the other side of my neck and just said 'i would go to the doctor' ummm what? so of course for the next two days of the weekend i was imagining all the things it could be, a goiter, a tumor, a bug bite, who knows. all i knew was i was calling my doctor on monday and getting the first appointment available.
monday came, saw my lovely PCP, she said i think i will send you for a CT scan on wednesday. went for my scan, she called that day and said i want you to go in for a needle biopsy. thursday i met with the surgeon in his office, he did the needle biopsy and when i asked what he thought it might be he said 'ya, looks like hodgkins' i then did a more conclusive incision biopsy and the results confirmed it. nodular sclerosis hodgkin's lymphoma. i walked out of the hospital holding chris' hand and said "so this is what it's like to have cancer"
and here we are.
i have decided to write this blog not only to keep friends and loved ones updated on my treatment and experiences on this journey, but as a personal journal for myself. please feel free to leave comments, words of encouragement are always accepted, and if you just want to read that's fine too.
but i didn't have a big reaction on the outside. i've never really been big on emotions, some might see this as bitchy, snobby, maybe strong, i dont know. i've just never been one to like cry at commercials, not big into hugs, any invasion of personal space really, i always get uncomfortable when my fiance makes some big romantic gesture that i know most girls long for, hell, when he proposed my first reaction was "i think i'm going to throw up" that's just me.
maybe that's where i should start. me. most of you know me because i have either shared this link with you, or a friend of a friend sent this, but for those randoms out there in cyber space, let me catch you up.
my name is jenn, i am a perfectly healthy, (well, other than the cancer) 27 year old female. i grew up in stoughton, i am still friends with people i went to high school with and i like it, i think i'm pretty funny. i love my family. i have an older sister and brother, my mom is one of the strongest women i know, she's a little nutty but i like it, and my stepdad david should have his own reality show. oh and my mom has a pug baxter who is currently suffering from Lyme disease (it's been a rough month for my mom and her babies) i live with my amazing fiance chris in a lovely apartment in wrentham. we met in college and he is my best friend, we have been engaged since august 2009 and were planning an october 2010 wedding. i like to workout, shop, drink wine, try new restaurants, cook, clean, go on facebook, etc. pretty normal life.
in march 2010, i was doing my usual tuesday night routine, came home from work, got into my pajamas, washed my face, made dinner, cleaned up and sat down to watch the newest episode of american idol. there must have been a bruins game on or something because chris was in the bedroom. i was randomly rubbing my neck, and felt something weird, like a lump or something. usually i dont get too concerned with things like this, but something made me alarmed and i went in and had chris feel it. he said he didnt think it was anything, we all have weird things in our neck. i kind of forgot about it for a week or so and then one friday night i was out to dinner with my dear friends jenn and christy jenn happens to be a registered nurse and i asked her to feel the lump. she felt it, compared it to the other side of my neck and just said 'i would go to the doctor' ummm what? so of course for the next two days of the weekend i was imagining all the things it could be, a goiter, a tumor, a bug bite, who knows. all i knew was i was calling my doctor on monday and getting the first appointment available.
monday came, saw my lovely PCP, she said i think i will send you for a CT scan on wednesday. went for my scan, she called that day and said i want you to go in for a needle biopsy. thursday i met with the surgeon in his office, he did the needle biopsy and when i asked what he thought it might be he said 'ya, looks like hodgkins' i then did a more conclusive incision biopsy and the results confirmed it. nodular sclerosis hodgkin's lymphoma. i walked out of the hospital holding chris' hand and said "so this is what it's like to have cancer"
and here we are.
i have decided to write this blog not only to keep friends and loved ones updated on my treatment and experiences on this journey, but as a personal journal for myself. please feel free to leave comments, words of encouragement are always accepted, and if you just want to read that's fine too.
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