For the past month or so, I’ve had nagging back pain which sometimes went from really bad to just an annoying ache. My oncologist says anytime a “new” pain comes and lasts more than two weeks, I am to call and find out what’s up. I called a few times and every time my doctor was quite certain it was only muscular, but to call back if it didn’t improve.
I kept putting off calling my doctor back. Partly because my friends were coming in town to visit and I was having my party, and partly bc I was frightened of what it might be. February is a tough month for me. Last year at this time, I knew something was wrong with my breast, but everything statistically said I would be ok. And I was totally caught off-guard when I wasn’t ok and was told I had cancer. This was the worst kind of deja-vu.
One of my most common places for breast cancer to recur is in the bones, and the spine being one of those places it likely could set up shop. So anytime back pain appears, it’s scary and takes my mind to a bad place of what may be causing the pain.
This week I could no longer handle the stress of the unknown and took a day off from work to see my oncologist. She took a blood test and said I needed to get a CT scan of my spine to see what was going on. She also wanted X-rays of my ribs since they are still sensitive from radiation treatment. I made the appointment for as soon as humanly possible (which was today) bc I needed to get this over with. “Scanxiety” is real and awful for anyone who has had cancer. The waiting before and after the scan and for the results sucks.
Luckily my results only took a matter of a few hours, and it’s ALL CLEAR! I cried a few tears of relief and now I can exhale and move on with my day and life until my next tests in a few months.
So many people who have had cancer said being a “survivor” can be the toughest part. They aren’t kidding. In some ways chemotherapy was easier. Sounds crazy, I know. But the unknown is terrifying. The “good” news is my body is just really beat up from all the treatment and I need to take it a little more easy on myself. It’s still difficult to admit and handle how my body has changed and the physical limitations I now have.
My doctor told me to get a rolling backpack/bag instead of carrying a big purse. To that I say: HELL NO. I’d rather live in pain.
So far, everything is ok. You know what would be an awesome way to celebrate (since I can’t go out and get wasted)? A donation to the Triple Negative Breast Cancer Foundation.
Break out your wallet. Here you go: http://tnbcfoundation.kintera.org/faf/donorReg/donorPledge.asp?ievent=1039337&supid=375289482
For the past month or so, I’ve had nagging back pain which sometimes went from really bad to just an annoying ache. My oncologist says anytime a “new” pain comes and lasts more than two weeks, I am to call and find out what’s up. I called a few times and every time my doctor was quite certain it was only muscular, but to call back if it didn’t improve.
I kept putting off calling my doctor back. Partly because my friends were coming in town to visit and I was having my party, and partly bc I was frightened of what it might be. February is a tough month for me. Last year at this time, I knew something was wrong with my breast, but everything statistically said I would be ok. And I was totally caught off-guard when I wasn’t ok and was told I had cancer. This was the worst kind of deja-vu.
One of my most common places for breast cancer to recur is in the bones, and the spine being one of those places it likely could set up shop. So anytime back pain appears, it’s scary and takes my mind to a bad place of what may be causing the pain.
This week I could no longer handle the stress of the unknown and took a day off from work to see my oncologist. She took a blood test and said I needed to get a CT scan of my spine to see what was going on. She also wanted X-rays of my ribs since they are still sensitive from radiation treatment. I made the appointment for as soon as humanly possible (which was today) bc I needed to get this over with. “Scanxiety” is real and awful for anyone who has had cancer. The waiting before and after the scan and for the results sucks.
Luckily my results only took a matter of a few hours, and it’s ALL CLEAR! I cried a few tears of relief and now I can exhale and move on with my day and life until my next tests in a few months.
So many people who have had cancer said being a “survivor” can be the toughest part. They aren’t kidding. In some ways chemotherapy was easier. Sounds crazy, I know. But the unknown is terrifying. The “good” news is my body is just really beat up from all the treatment and I need to take it a little more easy on myself. It’s still difficult to admit and handle how my body has changed and the physical limitations I now have.
My doctor told me to get a rolling backpack/bag instead of carrying a big purse. To that I say: HELL NO. I’d rather live in pain.
So far, everything is ok. You know what would be an awesome way to celebrate (since I can’t go out and get wasted)? A donation to the Triple Negative Breast Cancer Foundation.
Break out your wallet. Here you go: http://tnbcfoundation.kintera.org/faf/donorReg/donorPledge.asp?ievent=1039337&supid=375289482
it’s been so long since i’ve updated this thing….a casualty of returning to work and covering a presidential election. oh yeah, and covering a hurricane in the middle of this.
i am very lucky that i never lost power at my apartment. unfortunately, all my doctors (every single one) are in the part of the city which did lose power. the NYU hospital which was evacuated was where i had my surgery and spent three days recovering. it was really sad for me to watch the evacuations and all the problems unfold. it’s the hospital where my life was saved. my radiation oncologist says everything in the basement is completely destroyed and won’t be able to be saved. one of the worst parts of sandy are all the years of medical research lost because of the hurricane. before my surgery, i signed waivers for the hospital to keep my breast for cancer research purposes. i asked my doctor if it was lost—and he does not think it was. my doctor was one of the ones running up and down flights of stairs trying to save the research specimens and keeping them on dry ice. i am very lucky to have such a dedicated team who is so committed to not just me, but practicing medicine as well.
where i go for treatment was completely spared of any damage. unfortunately, the NYU cancer center was closed all of last week. i missed an entire week of radiation. i desperately sought out opinions of doctors if missing a week was bad or not-and the consensus was it wasn’t terrible. i wasn’t able to reach any of my doctors due to the storm, so i was a little nervous before there was a timetable for when the cancer center would re-open. by around thursday of last week, NYU predicted it would be up and running by monday, so i felt a little better. today i met with my doctor to find out what missing an entire week of radiation means for my treatment. it doesn’t change anything—but i may have to receive one extra treatment. my doctors are still deciding. there are risks to being over-radiated—one of them being developing secondary cancers and also damaging my lungs. my doctor also doesn’t want to over-cook my tissue since i still have two more reconstruction surgeries to go. i may not be able to avoid an extra treatment—but one isn’t so bad. radiation overall isn’t awful, but dragging myself every morning to the doctor is kind of annoying. luckily i’ve already done 7, and i only have to do 25 overall. i don’t love machines—i actually can barely stand MRIs, so having treatment everyday surrounded by machines and having to lay completely still is helping me get over it pretty quickly.
having to transition to real life as a “survivor” is not easy. i no longer wear a wig, and sometimes i feel like everyone is staring at me and strangers can figure out i had cancer. sometimes i just want to wear my wig again so i don’t have to worry about it being glaringly obvious. but with the length my hair is now-wearing a wig is crazy itchy, and not wearing a wig will help my hair grow out faster. i am supposed to stop eating sugar and seriously limit how much sugar i have. that’s a work in progress. i am also supposed to limit how much white carbs i have…not so bad. but also hard because pizza is my favorite food! again, a work in progress. my doctor says i have a two drink maximum….for the rest of my life. i asked her if i could sneak 3 or 4 drinks sometimes when i go to a wedding or somewhere with an open bar. she thinks i am insane, and probably an alcoholic. probably not the worst thing in the world to have to limit my alcohol intake….especially because drinking too much goes hand-in-hand to gaining weight and hangovers suck.
i truly feel like a work-in-progress….and i probably will be for a long, long time. at least my eyebrows, eyelashes, hair and appetite are slowly starting to come back!
and ps. save the date. february 16. blowout party. invite to come in the next 4-6 weeks. i plan to have 3 drinks (but NOT more!). don’t tell my oncologist, ok?
nearly six months later, i finally have a (tentative) end date. since i have tolerated treatment relatively well, i am going to have the full amount of chemotherapy possible (5 rounds left, 16 total). i’ll be done october 2. seems so close…but yet so far away. i can officially count the remaining sessions on one hand.
three weeks after i finish chemotherapy, i begin radiation. i am on schedule to be finished by last week of november.
i’ve never been so excited for the holidays….there will be lots of sparkly dresses worn and lots of champagne consumed!
so, on tuesday my oncologist will be letting me know how many rounds of chemotherapy i have left. it’s as few as three and as many as six. done as early as september 4, or as late as the first week of october. and then i’ll also know when i start radiation, and when i’ll be done with treatment altogether. it feels so surreal. like, is this really happening? did this all really happen? was my life really flipped upside down by a cancer diagnosis? then i see the scars, remove my wig, and remind myself that yes, in fact, my life has been turned upside down.
i’ve felt every typical emotion that a person with cancer has felt. guilt. sadness. happiness. scared. thankful. helpless. empowered. embarrassed. confused. worried. hopeful. now that i am back at work and am winding down with my treatment, i am starting to get the weird feeling that many people who have also had cancer have felt: holy crap, what just happened, and am i really going to be ok?
the hardest feeling is guilt. feeling guilty for the burden this puts on my family and friends. the stress and worry it puts on those around me. it’s very hard for me to wrap my mind around how my diagnosis makes others feel. sometimes i can feel it in their facial expressions or their tears. one thing is for certain. i can feel all the support and well wishes and prayers.
i hate feeling helpless. being fairly independent, it is extremely hard to ask for help, admit when my physical limits have been pushed too far, or have to say no to things because i am too tired. i’ve had to learn to ask for help, pause for a minute to rest, or stay home and chill out because i just can’t push myself any further. i try to remind myself that this is temporary. that in a few months, i will be myself again. that i’ll have the energy of a “healthy” 31 year old woman.
the worst feelings are confused and scared. will i make it to 35? to 40? to 100? will this come back? will i end up in hospice at a young age? having cancer can sometimes take you to a really dark place. i try to never go there, but the truth is, if i never went there, then i wouldn’t fully be accepting the reality that is receiving a cancer diagnosis. have i fully accepted the fact that i’ll never be pregnant? probably not. do i sometimes feel sad (for myself and whoever may one day be my future spouse) that i likely cannot have biological children? of course. thankfully i live in a city full of commitment-phobes so i don’t really have to deal with this right now. as painful as it is to think about the days ahead when i do have to face my fertility problems, i also know that it means i will have made it that long. that even though i’ll be feeling the pain of my reality, the fact is that i will be thankful to be living and breathing and able to feel that pain.
sometimes i hope i can make it long enough to experience certain things. sometimes when my mind goes to this dark place, i think to myself—i hope i live long enough to see this or that day. i hope i live long enough to see derek jeter try and break pete rose’s record. i hope i live long enough to attend derek jeter’s last game at yankee stadium. i hope i live long enough to see derek jeter make his induction speech in cooperstown. when i am really feeling greedy, i hope i live long enough to have a family and send kids off to college or even have grandchildren. perhaps i have a warped idea of what’s important, but these are things which make me happy and what i personally look forward to.
so this particular post doesn’t freak anyone out, my doctors have never given me a reason to feel like i need to worry right now. on one morning a few months ago, i was feeling sorry for myself about going to chemotherapy, and i bluntly told my oncologist i was having a bad day. i told her i didn’t want to die. her response: “i really like you. i don’t want you to die either.” i went from feeling sad to laughing out loud. my oncologist has a knack for what to say and when to say it. i am thankful she is my doctor, because i feel like she gets me.
why am i writing this? why am i admitting all these terrible feelings? because it’s the truth. i truly appreciate when people tell me they admire my strength and positive attitude. but the truth is, it can be exhausting to always be strong. sometimes i just want to sit around and cry and be scared. and i think that’s ok too. because 90% of the time, i am optimistic and hopeful and i live life. i see my family and friends, i go to parties and celebrate, i go to baseball games and cheer (and sometimes boo), i go to the beach and wear spf 1 million, i go to the movies and laugh, i ride the subway and complain, and i go to work and put in 100%.
to everyone in my life who has been there for me, thank you. all of you have made this experience so much easier. you know who you are. and i’ll be forever thankful.
so, the time has come that i’ve lost my eyebrows (ahead of schedule, i might add). i feel like i look like a cancer patient and/or an albino. luckily sephora carries products to make it look like i have eyebrows. i still have some eyelashes, but i’m losing those too. every day i try not to get frustrated that i’m brow/soon to be lashless, but it’s been hard. i try to remind myself that it just means the treatment is working.
i’m so unbelievably relieved that the first four treatments are over. i don’t wish adriamycin/cytoxan on anyone. every single day (for two months) is a crapshoot for which side effects may pop up. and each round brought different/additional side effects. including nearly fainting in public (sorry lissa, that won’t happen again.) but it’s over and i got through it. and i now never want to see a saltine ever again.
on june 19th, i was supposed to start a new drug called taxol. my body disagreed. i had an extremely bad allergic reaction to taxol and couldn’t even receive chemotherapy that day. the following week i started a different but similar drug called abraxane. i’ve had two rounds of it so far, and it’s much easier than A/C. i have some of my appetite back and ten times more energy. i can finally eat something besides crackers and mashed potatoes and bagels. i can get out more. i have less limitations. i can actually somewhat enjoy life again, as long as it’s not 100 degrees out. i used to love extreme heat…now i have to hide inside because i get dehydrated and still get tired easier than normal. due to the change of drug, there’s a change of schedule that comes along with it. this drug is three weeks on, one week off, which potentially puts me in chemotherapy until early october. i could be done as soon as september…my oncologist just doesn’t know yet.
what comes after chemotherapy? radiation! it won’t be physically challenging or come with the side effects of chemotherapy (i’ll have hair again!) but it’s tedious. i have to go to NYU every single morning (except weekends) for five weeks to get zapped. after that, tests to find out if i am in remission. every day i pray to hear that word. remission. i visualize what it’ll be like to hear my doctor say that word to me. remission. that is the goal from all this poison running through my veins, the side effects and other unpleasant things i’ve experienced these past three months. remission.
i have had plenty of good days, too. i always try to advantage of the days i’ve felt well. seeing my friends. going to parties. going to dc. going to yankee games. checking out movies. watching some pretty terrible reality tv. and hours of the food network despite the fact i rarely cook.
i miss my old life, but i also know my life has forever changed. perhaps for the better. i don’t take anything or anyone for granted. i want to set loftier goals for myself. i want to help the breast cancer cause in any way i can. since my case is “rare” i am asked to do surveys and studies. i do every single one i am asked to do. anything i can do to help. i’ve been asked to be an ambassador for the triple negative breast cancer foundation. it’s such an amazing organization and i can’t wait to help them raise awareness and funds. i’m lucky to be associated with such an outstanding group of women. check out it out here: http://www.tnbcfoundation.org/
thank you to everyone who has taken me to chemotherapy, crashed on my couch, asked how i was doing, and taken the time to just keep me company. it truly helps so much and i really appreciate it.
and quite possibly the best news, the yankees head into the all star break the best team in baseball. it’s going to be a long summer and fall….they better stay healthy and win the world series for me.
i know mine. and it’s positive. brca1 positive, that is. brca1 means i have a genetic mutation which led to getting breast cancer. the report showed i had an 87% chance of getting breast cancer. 87%. insane. but at least now i know why. the bad news is i am also at risk for ovarian cancer. not nearly as high, but the risk is there. what this means is i have to see yet another doctor every six months, and around when i’m 40 years old, i have to have my ovaries removed. i’m not exactly thrilled about this, but it is what it is. brca1 mutations are very common in people of ashkenazi jewish decent, which i am. so basically, i was high risk and i didn’t know it. this doesn’t mean all my ashkenazi jewish friends should run out and get a test to find out their status, but if you have a first degree family member who had breast or ovarian cancer it’s not a bad idea to ask your doctor for the test.
so, here’s the catch. i know i already decided against fertility treatments, and that turned out to be the right decision for me based on this test. however, what little hope i had to possibly get pregnant one day is almost zilch now. the window for me to have a child naturally is basically a couple of years (when i’m 36 or so, g-d willing i have clean scans over the next 5 years). but with this news, i have only a little time to try…if a doctor even allows me to try. and oh yeah, i should probably be married first. i’m sad i’ll likely never experience pregnancy, but i know it’s the path chosen for me. i thought i had already come to terms with this, but now it really feels real. i know five years is a long time from now and medical technology is amazing. but as of now, this is my fate. i’m sure “16 and pregnant” will still be a hit show by the time i’m ready to start a family, so there should be lots of kids out there for me to take home.
i just realized it’s been nearly a month since i’ve written a post. so here it goes!
so many of you are very kind to email, message, text and call me to see how i’m doing now that i’m in chemotherapy. simply put, it kind of stinks, but it’s manageable. when i go to the doctor, i’m pumped full of anti-nausea meds, fluids and the chemotherapy drugs. right now i’m on what is known as AC. very typical breast cancer chemotherapy cocktail. the side effects are less than pleasant. i’m pretty much bald now. i have very little appetite and for several days after, i am very, very tired. i force myself no matter what to go for a daily walk. my doctor wants me walking for at least 30 minutes a day when i’m feeling crappy. sometimes i do my 30 minutes and a couple of short ones to CVS or to get something to eat just to escape my apartment. it’s pretty tiny, so changes of scenery are needed every day.
so, besides going for walks, what do i do all day? not a lot. one of the hardest parts of being out of work on disability is how bored i get. i watch a lot of tv, read magazines and try to read as much as possible. i thought it was just me, but other patients have said it’s very hard to read the first few days after treatment. the meds make me a little out of it, making it hard to concentrate and actually sit down and read.
there is one thing i look forward to everyday, and that’s watching the yankees. anyone who knows me knows i love baseball. no matter how crappy i feel, i always look forward to watching the night’s game. when i was diagnosed i thought to myself-well, at least i’ll have the distraction of baseball season soon. and it’s so true. every night for a few hours i can enjoy watching my favorite team or get pissed off at joe girardi for his decision-making skills. i love sports documentaries. one of my favorites is “baseball” by ken burns. after 9/11 the people of NY couldn’t wait for baseball to come back, bc it gave them something to look forward to later that night to watch on tv. that’s how i feel. no matter how bored i am that day, or how lousy i feel, i still have something to look forward to.
the days i feel good, i try and fully take advantage. this weekend was no exception. i was barely home and i loved every second of it. so, thank you to all my family and friends for entertaining me and making sure i had fun!
thank you again for all your love and prayers. one month of chemotherapy is down, four more to go! i got this!
How I roll to chemotherapy.
I pity the fool.