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Tuesday, December 27, 2011

Your Deepest Wish Will Come True

This was my fortune from a fortune cookie I ate last night. Although I'm usually not one to get excited about a small piece of paper in a hard, crunchy cookie, I admit my heart soared with hope...how did the person who placed the fortune in the cookie know I had a deep wish that desperately needed to come true? Lol. Because I just know it was meant for me! Granted, I don't think anyone actually gets a bad fortune cookie, my last one read: determination is the wake up call to the human will. Not exactly a fortune, but inspiring so I put it in my wallet as a keepsake...I'll take what I can get!

I think I'm at the point (as I'm sure many other people dealing with health issues reach) where I look for signs, words, images--anything that means I'm going to be ok. I've even thought about going to a psychic that my coworkers swear by just to see what he or she would say...although I'm frightened they would say something bad. I actually went to a psychic when I was about 21 with a friend of mine just for fun and I remember the psychic told me I would live to age 76 and have 3 kids. I remember walking away pissed that she said 76 because that didn't seem old enough! Ironically now if someone told me I'd live to 76, half of me would be overjoyed while the other half would still think it wasn't long enough! Lol. My grandmother is 98 years old and my grandfather lived to 97, so I'd say I have some good genes on my side. But that psychic apparently wasn't that great at her job because she failed to mention that I would be diagnosed with cancer at 26, so I'll have take what she said with a grain of salt. And what if she did tell me? Would I have believed her? A part of me probably would. The hypochondriac in me would have freaked out and tried to figure out how to prevent it. But I'm sure my friends and family would have told me I was crazy. That reminds me of a time when I was in Miami for spring break, having dinner with a group of friends on south beach at a table outside. A woman walks up to us and points at me and says, "I need to tell you something important that you should know." I said ok, and she held out her hand and said "five dollars." So I laughed and said "uh, that's ok" and shooed her away. I always wondered what made her pick me out of our group of friends, was it because I looked the most gullible? Or was she simply crazy? That's what I thought at the time but of course now I wonder if she really did know something important that I should know.

Who knows. It doesn't really matter anymore since the hand has been dealt and I just need to figure out how to win. Ross and I are in Chicago now, we celebrated Christmas with his parents for our first married Christmas. It was sad not to be with my parents and my brother for Christmas but it's nice to be a wife and start new traditions with Ross and his family--because now we're all family! Christmas is always my favorite time of the year and although it doesn't completely take my mind off of my issues--because really what will--it does help. And you just can't help feeling hopeful and positive during this time of the year...no matter what your fortune cookie says :)

Sunday, December 11, 2011

Omg, I Die.

Continuing my rant on all things that make you think about cancer when all you want to think about is sunshine and butterflies (lol) are the phrases that all of us say without even thinking about it...namely, "I was "dying" laughing over that story", "I'm gonna kill you", "Omg, I thought I was gonna die listening to him", or my favorite expression by Bravo star/stylist Rachel Zoe, simply "I Die" or even "Die" which she says every time she sees an outfit she loves or "dies" for.

It seems silly, but I was struck by this the other day after dinner with a group of girls. One girl was telling a story and another girl was laughing so hard she said "stop it, you're killing me, I'm dying!". Why do we use that phrase so much when something is so hilarious or amazing or annoying that we're like, totally dying over it? It's so crazy, yet I'm guilty as charged. Yeah I've "died" over something someone has said or said I was gonna "kill" a friend (or Ross) for pissing me off and never thought twice about it. Yet, after my blood clot experience where I really did almost "die", it doesn't seem so funny anymore. Yes, I'm uber aware of everything I see/hear/think that's related to death, so it makes me sensitive to almost anything that a so-called normal person wouldn't even think about. And yeah that sucks. I hate being like that, I feel like I'm one big ball of emotions and should wear a sign on my head that says, "please tread lightly, may start crying uncontrollably". I miss the days when watching Wendy Williams play with her wig on TV didn't make me think of cancer or someone planning a trip to South Africa didn't make me think of the long flight and possible blood clot...what was life like before I had a health crisis on my hands?? It's getting harder and harder to remember. And yet, every day I'm also reminded how lucky I am to be here. How lucky I am to still have all 4 limbs, eyes, hands, nose, etc. To not be brain damaged after being unconscious from a cardiac arrest. To bitch and moan about the crowds in Times Square when I'm just trying to get to the subway. To get excited to watch "Keeping up with the Kardashians" every Sunday night. To dance on tables and get a little tipsy (just a little Mom and Dad!) at a club. I have my moments where I'm ok, where I cry not because I'm scared about my future, but because my new suede booties got wet in the rain. It's a strange life, but I'm living it.

So I try not to get offended when people use the "I die" phrase around me. Because as a doctor reminded me last week, we're all technically "dying" from the moment we're born and no one's future is promised. It's a bit morbid for my taste because my plan was always to live forever..lol..but it's true. So how am I doing? I'm ok, I just completed round 7 of the wonder chemo and I have round 8 right before Christmas. So in January 2012, I will know if I am in complete remission and we'll go from there. It's a strange thing, but it's almost more comforting to be in the middle of chem then it is to be finished and have to go through a scan. Because when you're in the middle of it, you can go about your day, knowing the drugs are killing cancer while you're sleeping, eating, talking, etc. The drugs are doing all the hard work, you're just chillin--kind of! But when you're done and it's time for a scan, then it's time to freak out. I hate it!! But I want it at the same time, I want to know that the cancer is gone. I want to live.

Sunday, November 20, 2011

Oh, This Drug "Might" Cause Cancer

I may have written about this before because it's something that I'm constantly aware of. We've all seen the pharma commercials that tout how great a new drug is at healing a specific condition and then the legal voice over quickly states that the drug may cause certain life threatening issues like cancer and oh yeah it might kill you--but it's really great and will totally get rid of that pesky hair on your chin! Ross and I used to laugh about this several years ago because it seems so crazy that these drugs are supposed to heal one condition and yet can cause another, but now it's not as funny...it's kinda scary!

I guess it's because I'm constantly searching for a reason of why this happened to me and if perhaps I unknowingly took another drug that somehow lowered my immune system and allowed those cancer cells to take over my body. Yet I know I haven't. I was a healthy baby, child, teen and young adult. I've never taken a prescription drug for any other disease prior to my diagnosis so I know that's not the case. But these commercials still affect me (ironic since I'm in the marketing/advertising business myself and should be immune to this), because not only do they say certain drugs can affect your immune system and cause cancer, they actually state that certain drugs can cause lymphoma! Which makes sense because lymphoma is a blood cancer, and when one's immune system is affected, it makes it easier for some cells to become mutant, malignant, and cancerous. So it makes me think...and makes me change the channel as soon as I see an ad that mentions the possibility of cancer.

However, I always tell myself afterwards...if I did take one of those drugs in the past and ended up with lymphoma now, wouldn't I just be more pissed off? Definitely. Because I would know what caused it and the fact that (maybe) it could have been avoided. So I guess it's better off not knowing what caused it, because it's here and I have to deal with it. And as much as I want to, I can't go back in time.

Oh, and it's not just the cancer causing drug commercials that rattle me now. Now, my ear is much more attuned to commercials that mention how certain drugs--namely birth control--can cause blood clots. Yea me! This is nothing new, I always knew that birth control can cause blood clots, especially if you are a smoker, yet it never worried me. However, now my doctors say I can't take birth control because statistically speaking I'm now prone to having blood clots--although it would be very rare since I'm on blood thinners. As a double whammy there are a few birth control commercials that say the drugs are "not for women with certain cancers" (that would be me) and are "known to cause blood clots" (yep, me again). So it's hard. I'm just trying to watch my favorite Real Housewives show and a commercial may come on that mentions cancer and blood clots in one fail swoop and I'm suddenly crying. It's a hot mess and I'm sure it will be a long time before this kind of thing doesn't bother me. In the meantime I wish there was a way I could block these ads from showing on my TV!

I do feel alone in these instances because I don't know anyone who has dealt with the exact same health issues as me...each cancer patient has their own unique issues and I'm sure there are people out there with much worse circumstances...but it's easy to fall into a pool of sadness about the hand I was dealt. Especially since some things have been so unexpected...not that anyone really knows what to expect, but often we like to think we have it all planned out--I certainly did. This week I watched a special where Diane Sawyer interviewed Gabrielle Giffords and I watched the amazing recovery she's made since being shot in the head. Unimaginable. I see in her what some people may see in me and it's so inspiring that someone could fight so hard and defy the odds. And it helps me feel better, stronger, and keep my eye on the prize of a full, complete remission and a long, happy, healthy life.

Diane said something that really spoke to me. She said that Gabby Gifford's story was one of the "courage you bring when the life you live is not the one you plan." Amen to that. Because at the end of the day, that's what it's about.

Thursday, October 20, 2011

Partial Remission? I'll take it!

So today was the day. The day I simultaneously dreaded with all my might and wanted with all my heart. The day I would find out if the new drug Adcetris (SGN-35's official FDA name) was working in my body. Well it's working!!! Thank goodness!!! I had my scan yesterday and I manged to work myself into a frenzy because I was so worried about what the scan would reveal. Up until the moment I was on the PET scan machine, I prayed and prayed and then prayed some more. I tried to picture my doctor telling me the cancer was gone and giving him a hi-five! But then the dark thoughts would invade my brain and I would imagine my doctor tell me that the cancer was worse. So, as you can tell, I was all up in my head, thinking crazy thoughts!

When I got back to my office after my scan I emailed the two nurses that I work with and begged them to tell me something...anything...about my scan! I was scheduled to return to the doctor's office today to find out the results, but I felt like I was having a panic attack from the anxiety, so I needed to know something asap. I've been through so much--so many scans and so many disappointments--that it was hard for me to focus on being positive. Thankfully, one of the nurses called me back and told me that my scan was "much better"! I let out a sigh of relief, because those were the words I needed to hear.

And I'm so happy that I spoke to my nurse yesterday because today when Ross and I went to the doctor's office, it was packed! So we had to wait 2 1/2 hours before we saw my doctor. I think I would have passed out from stress/paranoia/anexiety if I had no idea what my results were. Once we saw my doctor, he said that my scan looked really good. Some lymph nodes had even returned to normal! He said I was in "robust partial remission". Now no one has ever, ever, ever used the word "remission" in reference to my PET scan reports. And it was amazing to hear. He wants to do 4 more cycles of Adcetris and than another scan to see if (fingers crossed) I will be in complete remission. After that, we will have to make some decisions such as continuing treatment or doing another transplant which will be the "Cure". I wish that this drug alone could be my cure, but my doctor said that it is unlikely that 1 drug alone could cure someone from cancer, you need to either use more drugs or have a transplant. That depresses me, but I can't focus on that now, just have to get to the complete remission finish line first.

So this is great news obviously...something that I wanted so bad, especially since I will be turning 29 in a few weeks and I really didn't want to celebrate another birthday with cancer. Even though some cancer cells are still there, I'm not as depressed as last year when I turned 28 and felt horrible about my situation. This is the best birthday present I could have asked for!!

Friday, October 7, 2011

Walking for a cure




This past Wednesday I went to my first Light The Night Walk, the Leukemia & Lymphoma Society's annual walk to raise money towards blood cancers. The LLS is a great organization that has a lot of events and seminars for patients and survivors and I wanted to go to the walk last year but was too sick to go. I asked Ross to come with me because I was a little nervous about what to expect. I didn't want to get too emotional or break down so I definitely felt wary as we neared South Street Seaport in NYC where the walk was taking place. I was constantly looking all around me, part of me in awe over how many people were there and part of me wondering if I would see someone I knew--either another cancer patient or perhaps a supporter of the cause.

When you check in at the walk you're given a bracelet if you've raised a certain amount of money and a balloon. The balloons are 3 different colors; red (for supporters/care givers), white (patients/survivors) and gold (in memory of a loved one). As we neared the check-in desk I noticed I was surrounded by red balloons and some gold but only a few white. So I quickly got our bracelets and told the check-in person we didn't need balloons. Ross asked why and I told him that I didn't want to stand out with a white balloon. Here was a place where I expected to be with other people in my situation...cancer fighters...yet when I looked around, I felt like I didn't see those cancer fighters, instead I mostly saw healthy people that were supporters and once again I felt different. I know it sounds silly, because everyone at the walk cared about finding a cure, not whether I was holding a white balloon or a red balloon, but symbolically it made me sad because I was different, not normal. I wanted to be on the other side with a red balloon as a supporter, not with a white balloon as a sick person. Ross shook his head and told me yes indeed that I was being silly. He told me to look around and see that all the red balloons that represented all the support out there for my illness. He said that it should make me feel good to see that, so he made me get a white balloon and surprisingly no one stared at me or looked like they felt sorry for me! Just kidding...I know I can be crazy sometimes. And I do have to give LLS credit for not making a difference in balloon color for patients and survivors, because they feel that all patients are survivors, regardless of whether you are going through treatment or not and I respect them for that.

The event itself starts with a remembrance ceremony where the names of loved ones who've passed are read. Even though I didn't know any of the people who's names were read, that part was hard and scary for me, a reminder of what this disease can do. Then a few LLS staff members spoke and the team captain of the team that raised the most money spoke. He said that his team, the "Lymphomanics", started when his wife's brother was diagnosed with Non-Hodgkin's 10 years ago. Two years later he actually was also diagnosed with Non-Hodgkin's--such a weird coincidence. Following his treatment, he was pronounced cancer-free. But three years later he found out that now he had Hodgkin's. I audibly gasped out loud at this statement...I mean, how much can one person take?? But he said he went through treatment for 6 months and is hoping to find out that he is now cancer-free again in the next few weeks. His brother-in-law is now healthy and doing well. And while dealing with all of this, he still managed to raise almost half a million dollars with his team for blood cancer research. How amazing...to be going through all that...for his family to be going through all that...and for him to still focus on raising money for the disease. That brought tears to my eyes. But I got it together and we started the walk.

I haven't done a charity walk in years and as I think back to previous walks I have participated in for breast cancer and Alzheimer's, I remember thinking it was fun. Bonding with people, getting a little exercise and feeling good about yourself for helping others. But I never thought about what it would be like to actually be that person who needed help. It's humbling and frightening all at the same time. I think that many of us who have helped out at soup kitchens, donated clothes to the homeless or ran in a race to raise money for cancer never thought you could end up on the other end of the receiving line, but I'm here to say its possible. So this experience was far different from any other walk I've done, because it was truly a walk for my life. A walk to raise money for cancer research and drugs that will save my life and allow me to go on and help others. I had a few moments where I became overwhelmed with emotion as we walked through downtown New York and over the Brooklyn Bridge. There were LLS staff members cheering us on and music playing inspirational songs like "Lean on Me" that just made you feel it deep down inside. And there were photos up along the walking route of people who had lost their battle and those who had won. It was and always will be hard to see pictures or read stories of those who have lost their battle with cancer because it's impossible to not think "will that happen to me?", but it's also inspiring to see and hear the stories of those who have won.

When we ended the walk, Ross and I took a few pictures at the finish line by a sign that read "One Step Closer To A Cure" and I felt hope again. However, I had another moment of sadness when Ross told me that he got a text that Steve Jobs had passed away. I knew he had pancreatic cancer in 2004 and I wasn't sure if he ever reached remission, but it was so awful to learn of his passing. I hate hearing about people passing away from cancer and yet everyday I feel like I hear about another person who dies from the disease. It's the harsh reality of the disease and damnit, it sucks.

All in all, I am glad that I went. I think it was important for me to go and experience the efforts that are going towards cancer research and I was so thankful to my friends and family that donated money to support this cause. Next year I definitely plan to go again (white balloon in hand) as a survivor with a big group of friends and feel proud to be there.

Friday, September 30, 2011

You're So Vain


When I first started this blog I joked that I was a vain person (after all I did want to stay fabulous!), so I was really worried about the whole 'losing your hair' part of cancer and I really hoped I didn't. At that time (although I did cry about the cancer too) that was really my focus...knowing the high cure rates for Hodgkin's, I figured that I would definitely be cured so I put all my energy into figuring out how to not lose my hair in the process. Looking back I want to kick myself for being so vain, caring so much about the way I looked and not focusing more on my treatment. I had no reason to believe that initial treatment wouldn't work for me but I still wish I had at least prepared myself for the option that it wouldn't.

So you would think by now I would have gotten over my "vainness". First there was the hair, then one of the drugs in my initial AVBD treatment gave me small brown scratch marks over my arms and shoulders, then I had to have a port implanted and got a scar from that, then dark lines began to appear on my nails and finally with this recent open heart surgery I got this scar on my chest. With each change I cried, I complained, I didn't understand why this happened to me. For me, these changes on the outside revealed to the world that I was different, that I wasn't normal, that something was wrong with me. I hate myself for caring soooo much about the way I looked, especially when I'm fighting a horrible disease, yet it's almost like each physical change has made me care even more. Now instead of admiring celebs and models on TV and magazines, I admire old pictures of myself--with perfect hair, with perfect skin, with perfect nails--of course I didn't think so at the time, but hindsight is 20/20. I stared at the picture above on this post for about 15 minutes last night, wondering why I still couldn't be that girl...on her honeymoon, having what I like to call my "sports illustrated moment", posing in the sun, on a rock in Greece! That girl had no idea about what was about to happen to her in a matter of weeks. And even though I wasn't happy with the changes that had already taken place with my body, I would give anything to go back in time and be her again. As crazy as this all may sound, this is the mess that goes on inside my head

I'm now in the strange position of having to "check" myself. As I stare in the mirror and complain or cry about the changes with my body, I'm forced to say, "hey lady...you are ALIVE". If anyone was given the choice...a few scars or LIFE, I think we all would chose scars. And then I remember the stories I've read about other dealing with tragedy-soldiers losing arms and legs in war and still moving on with life, a young woman being burned beyond recognition in a plane crash and still moving on with life, and anyone who was ever dealt with a horrible physical circumstance and still gets up every day with a smile on their face, and then I feel ashamed. Who am I to cry about a few changes when those people have lost their legs or their eyes? There's no comparison. I feel so superficial and I hate that. I think it stems from my need to be a control freak and despite everything I've been through, my appearance has always been something I could control, until now. So it's a constant struggle to remind myself just how lucky I am--even when I feel my most unlucky.

So just add that to my list of inner struggles as I go through this journey! Yesterday I had my 4th cycle of SGN-35 which now has a real drug name but I can never remember it! Next up, the dreaded PET scan on Oct 19th. Here we go again. I can taste remission, I can feel the joy that that simple word can bring, just typing it brings a smile to my face and joy to my heart, I want it so bad. And despite everything, I think it's still possible. Me becoming less vain? I'm working on it!

Wednesday, September 7, 2011

Two years later...

This past labor day weekend Ross and I went to Martha's Vineyard one last time before the summer ended. It was beautiful as usual, but it also made me a little somber. Since it's the place that Ross proposed to me back in 2009, it's really special. However, since we only go in the summertime, it also reminds me of how many years I've been fighting cancer. I was diagnosed in July 2009, so the summer is always a reminder of how long it's been. Which, to be frank, really sucks since I love summer!

That first summer I was diagnosed, Ross proposed shortly after and I truly thought I would only be in treatment for 6 months and then I could move on, plan my wedding and be happy and healthy. And Lord knows I wish that happened. The following summer we went to the Vineyard a few months after my auto stem cell transplant. I had dealt with a year of vigorous treatment, I had to wear a wig, I didn't look or feel that great and I had a PET scan coming up in just a few months. I was so scared of what might happen if I wasn't in remission, and yet and I still thought that after all I had been through, I would be. But it wasn't my time yet.

And then this summer rolled around. In some ways I'm better, I'm stronger, not as physically fragile. Yet I still have cancer. I can't see it or feel it but I know it's there. And I hate it with every fiber of my being. I'm tired of thinking about it, talking about it, hearing about it, crying about it, and fighting it. I never in a million years imagined that I would still be dealing with this disease two years after we were engaged. I thought by now I would just be getting regular checkups and feeling like a survivor. So it's hard. Martha's Vineyard looks and feels the same each year, and yet my physical and emotional state have changed so much since that summer and it's hard not to think, where will I be in a year? What will be my mindset next summer when I step foot on the Vineyard? Because this world of medicine is so up and down, I never know what obstacle I'll have to face next...and believe me there are many. Starting this journey I thought it was just the cancer that would keep me up at night, but there are many, many other side effects that I would have never imagined. And it's a lot to deal with--just one of these side effects would be hard but I have like 10! So I'm scared...I wonder what's next? After the horrifying blood clot, I decided that situation had to be my rock bottom and I have nowhere to go but up. But unfortunately I don't get to make those decisions.

Today I had my 3rd treatment of SGN-35, which was FDA approved and now made available to everyone in my sucky position (basically anyone with relapsed or recurrent Hodgkin's) all over the country. My doctor said, "lets get you into remission and then we'll go from there". His confidence makes me confident. He said that the FDA approved this drug quicker than he had ever seen them approve something before. And yet, we never know until I have a scan, which will be after my 4th treatment. Lord how I hate the scans. They are the bain of my existence, the fear and stress that surround them is like no other. But it's a necessary evil to find out what's going on inside my body. Sometimes I just want to run away and never go back to the hospital or doctors office again, and I wonder what would happen? Maybe it was all a mistake? Maybe I was never really sick. I know it's not true, but sometimes I play the "what if" game with myself in the hopes I can wish it be true.

So two years later, here I am. Stronger? I guess some would say that. As much as I moan and complain, I have and always will be a fighter. It's exhausting to say the least but what other choice do I have?

Monday, August 22, 2011

Why Me?

It's not what you think. Yes, of course I've said "Why Me?" to myself a million, trillion times since my diagnosis. But this is different...this "Why Me?" is why was I so lucky to live? Sometimes I feel like the unluckiest person in the world...I was diagnosed with cancer, initial treatment didn't work, and 2 years later, I'm still fighting this disease. Yet on the other hand I'm the luckiest person in the world...I was lucky to survive an awful, awful, scary blood clot and heart surgery...many other people do not. So I think, "Why Me?", why was I chosen to live and go on when other people do not. I think of other people that have passed away from cancer...a college classmate, a little girl that performed on Broadway in the Lion King, a friend's grandmother...and I think, "Why Them?". It would be crazy to think that my life is more important than theirs, so why did I survive and they did not? It's all so hard to comprehend--the great mystery of life and death--who survives and who does not.

And it goes further than cancer...as the 10th anniversary of Sept 11th comes around, we're surrounded by stories of those "unlucky" people who happened to be in the twin towers that day, who happened to be on the plane that day. And it just doesn't seem fair...they didn't do anything wrong or deserve to die in such a horrible tragedy but they did. A few weeks ago I found out that a guy I went to college with died in a plane crash. I didn't know him well...I actually remember having a slight crush on him freshman year and he later dated a friend of mine, but we never kept in touch when school ended. He was married with a baby on the way and he was in the unlucky position to be on a plane that crashed. In the days afterward a Facebook page was created in his memory and hundreds of friends shared their favorite memory of him or how he touched their life or talked about what a great person he was. It was beautiful, yet so heartbreaking. I thought about his wife, his parents, his unborn child and wondered how they would go on. And then I thought about how close I came to dying. People talking about my life in the past tense and creating memorials in my name. The emotions are overwhelming, because I don't understand it. I don't understand why I'm still here, why I get to hug and kiss the ones I love, why I get to laugh and cry with my friends and family. Why I get to be annoyed by a line at a cash register or a crowd in the street, the silly things we all take for granted. It hits me at the most random moments...typing an email, making dinner, looking at the big blue sky, I realize how lucky I am.

Yet, it's not always easy to keep that in perspective and that's why I wrote this post. To remind myself. I am lucky...despite my daily fight against cancer. I've never been the type of person to take life for granted, I was always worried about dying even when I was a little girl. So now I'm even more aware of how quick life can change, in an instant, in a moment. I make sure to tell my loved ones that I love them every time we speak to have that peace of mind. I think the important thing to remember is that no one is promised tomorrow, so I'm so grateful to have had today.

Wednesday, July 20, 2011

On to the next one...


So it's almost been a month since my "incident" as I've started to refer to it as. I'm still worried, scared and paranoid as I'm sure anyone would be. Although I adjusted to being alone in my house better than i thought I would, I still have some moments where I freak out...worried that I'll suddenly pass out, unable to call 911 and no one will be here to save me. I keep trying to remember how I felt right before I passed out from the blood clot but unfortunately although I felt a little strange and sat down, there was nothing that scared me or even remotely made me think something was wrong. I was basically asymptomatic which is scarier than anything because without symptoms how do you know anything is wrong??

My doctors have assured me that it's normal to be scared and I've had ultrasounds on my legs and arms to show that there are no clots. I'm now on blood thinners and have a filter in my lung to prevent blood clots from going into my lung. But regardless of knowing all that intellectually, emotionally I still have a ways to go before I feel completely comfortable in my own skin. Oh and yeah there's still that lymphoma issue to deal with. Ugh. If I thought I was over cancer before the blood clot, I'm even more over it now. Why why why do I have to deal with this? I'm so tired of the whole medical field. I simutanesouly love doctors for saving my life and hate them for making me feel like crap. I honestly don't know what medical issue to worry about more. But my oncologist said that the most important thing to focus on is the lymphoma because it is the source that can cause all these other problems. So tomorrow I will begin the SGN-35 treatment that I was supposed to start 4 weeks ago. Thankfully the treatment itself is very quick and its only every 3 weeks and side effects are supposed to be minimal. I'm ready to start another drug that could lead to a cure but there's always optimism at the beginning and I've been down this road so many times it's hard to not worry that it won't work. It has to work. That's it. I lived through a cardiac arrest, blood clot and open heart surgery. I have to believe that I lived to beat this cancer and lived to tell my story and hopefully write a book about it! Plus my doctor told me that I'm probably the only person who had a life threatening blood clot and went on the SGN-35 trial, I love attention and notoriety, but that's not exactly the kind I want. In this case, I want to be like everyone else, the survivors, the high percentage of people who beat this disease and come out victorious.

My friends have been super supportive and even held a recovery party for me 2 weeks ago...complete with party favors and confetti. The pic was taken after a few people left but as you can see I don't look like someone who recently had surgery...I'm telling you hair and makeup work wonders for the healing process! It was nice to feel so loved and special and I can't wait until they throw me a cancer-free party :)

Tomorrow Ross and I are headed to Martha's Vineyard to see my in-laws (such a strange word to say!!) and Ross's extended family. I'm excited about getting out of NYC for a few days and relaxing in MV but I must admit, part of me is worried because last time i tried to go out of town something bad happened. It's funny how your mind makes those connections. I'm trying to reassure myself that I'll be fine and there is a hospital on the island if anything happens...but then I can't believe that I'm living my life worried about hospital locations! Ugh. Next week will be the anniversary of my diagnosis 2 years ago and I NEVER even imagined that I would still be in the "trenches" like I am now. It makes me really sad and confused as to why I'm part of the small percentage of people with Hodgkin's that don't respond to initial treatment. I hate that i do this, but I always look at pictures of my life and think "oh that was before cancer" or "after I knew I had cancer" or even, "oh I probably had cancer then and didn't even know". It really sucks. Sometimes your mind is worse than your body and right now I'm kind of all over the place.

Wednesday, July 6, 2011

Bouncing back

As I catch up with friends and family about my recent experience, it's even more clear to me how lucky I am. People have been praying for me and lifting me up and it makes me feel so good to know that. Of course I still have moments of disbelief where I can't believe it happened, can't believe I survived. My mind can barely comprehend everything because it sounds like something that happened to someone else. Ross, my mother and I went to see my oncologist yesterday and he was amazed by my progress a week after surgery. As Ross told him the story and included a detail that I didn't know...that I almost crashed again during the surgery...and I felt like he was talking about an episode of Grey's Anatomy, not me! (I used to love Grey's but I don't think I will be watching anymore!). It's hard to balance the feeling of gratefulness that I am still here with the fear of something like this happening again. Although the doctors have made precautions that it shouldn't happen again, by putting me on blood thinners and a filter in my lung to catch any potential blood clots, the fear of this event is unimaginable. Because it was so sudden and I didn't really have any of the typical symptoms, I'm frightened at the idea of it happening again and being alone. It makes me scared to be alone and I've never felt that way before. I've never felt like I couldn't take care of myself and I suddenly feel so vulnerable. I let my imagination get the best of me and try to figure out what I would do if I was walking down the street, on the subway, in my house and all alone when something like this happens. It's terrifying to feel like this and I'm sure it will get easier as time goes on, but right now it really sucks. As if I don't have enough fears!

And speaking of fears, I still have this cancer to face. Although the blood clot could have happened to anyone, my doc feels that in my case, it prob was a result of the disease. So he said we still need to treat that to prevent further problems from popping up. I was set to start an expanded trial of a drug that's about to approved by the FDA last week, so of course my fear was that I could no longer participate in the trial. Thank the Lord, I am still eligible. My doctor said that we prob will need to wait a few weeks for me to recover before starting this new drug, but the fact that I can still do it is another miracle. You know, it's hard at this point because every drug I've tried has been positioned to me as a "great drug", and I believed the hype until it didn't work for me. I know that just because it doesn't work for me doesn't mean its not a great drug, it just didn't work in my body which is beyond frustrating. So this drug is supposedly the next great drug and I am just hoping that it is what my body needs to kill this disease. It's done great things for people in my position and I want to add to those numbers. Especially after surviving the blood clot, I'm hopeful.

And as usual, I'm anxious to get back to my regular life. My mother is still in town, helping me with all my doctors appts and making sure I don't overexert myself. She is wonderful to have around and part of me doesn't want her to leave because then I'll be alone when Ross goes to work, but it also means it's a step back to normal life, so I'm conflicted. I just want to get better. The pain from the surgery is so unexpected since I never expected to have heart surgery and the recovery is hard because the incision was made in the middle of my chest and you never realize how much you use your torso for everyday things, so I find myself saying "ow" a lot. But it will get better, this I know.

Wednesday, June 29, 2011

A wedding, a honeymoon and a blood clot

It is literally a miracle that I am sitting here typing a blog. I'm sitting in a hospital bed at Mount Sinai in NYC recovering from emergency open heart surgery. I'm shaking as I type this because I truly know how precious life is because it almost slipped away from me Friday night.

With no notice I passed out and went into cardiac arrest Friday night at my apt. Thank the Lord Ross was there to call 911. We were talking about our trip to the Hamptons that weekend and I was packing. He left the room for a second to get a suitcase and I felt strange so I went to sit down and the next thing I know he's leaning over me shaking me. He said the he found me crumpled on the floor in a weird position and I tried to talk to him but then I passed out again. I could hear him calling 911 and the fear in his voice, but I couldn't say anything to him because I literally couldn't breathe. It was nothing like I had ever experienced before, not like I just couldn't catch my breath after working out, I literally had no breath. I went from normal to cardiac arrest in a matter of seconds. I was gasping because I felt like I was being smothered. I blacked out again and came to when the EMTs were there. I remember they were yelling my name and trying to put an oxygen mask over my face but it made my breathing worse so I pushed it off and said "I can't breathe", but I don't know if they even heard me. It was hard because I could hear everything they were saying but I couldn't communicate back. I was terrified because it was the first time I ever truly thought I was dying. Right there, on the floor in our bedroom. I literally thought "this is it", and it was horrible, unimaginable. And that's the last thing I remember. The contrast of the yelling Friday and the silence when I woke up on Sunday in ICU was like a movie. It was then that I learned that I had blood clots in my lungs, completely blocking the oxygen from getting into my body. A doctor who wasn't supposed to be there that night but was there for another patient and specializes in the surgery I needed was able to operate on me that night and saved my life. And he wasn't the only one. Ross, who is now my husband, saved my life. He was able to get help and get me to the hospital in time for me to live. It feels so surreal to be typing this but I know it's true from the bandage running down my chest. I know that I am supposed to be on this earth for a reason because there are so many factors that fell into place to lead to my survival. And I don't know what I would do without Ross.

This wasn't supposed to be the post I wrote after our wedding. I was supposed to write about our beautiful wedding and fabulous honeymoon. We were married on June 4th in Charlotte and it literally was the wedding of my dreams, from the ceremony and vows to the reception and cake, everything was just as I envisioned it. Then we went to Greece for 10 days for a wonderful honeymoon, one that was full of beautiful views and romance. Unfortunately now my honeymoon feels a little bittersweet because my doctors believe the 10 hour flight is what exacerbated the blood clot. Ironically I had felt like my legs were a little sore a few weeks before the wedding and even mentioned to my friends and my doctors that I thought I could have a blood clot (soreness in legs is a symptom), but I was told it was really rare to have it in both legs and it was probably nothing. I never knew how in tune I was with my body until after this episode because somehow I knew something was wrong. And wrong it was. The doctor who performed the surgery said this is common in cancer patients because of the disease and the blood clots were on the bigger side so they had been there for a few weeks. I can't believe I was walking around with this dangerous situation in my body. When it happened, it was like a switch had been turned off. I was fine one moment and couldn't breathe the next. Every time I think of it, I want to cry because I'm so grateful to be here.

And I'm so grateful to my family and friends. When I woke up Sunday in the ICU, I learned that I had at least 20 people in the waiting room who had been praying for me. Ross and I were actually supposed to go to the Hamptons with his godsister and her husband the night I blacked out and I'm so grateful they arrived at the same time the ambulance did so Ross didn't have to deal with this alone. My parents...oh my parents...they have had to endure so much with my health situations the past 2 years and the fact that they had to fly from Charlotte to NYC on Sat knowing what I was dealing with breaks my heart. My friends...Ross and my friend Tiffany contacted all of our friends--who had just celebrated a wonderful wedding with us--to let them know the devastating news. And they came to support me even when I didn't know they were there. And Ross. he has been tested time and time again, standing by my side for every health crisis. To think what he must have been thinking watching me struggle for life is too much. It's not fair for me or for him to have gone through so much but I know God placed him in my life for this very reason. I am so loved, it's overwhelming.

I don't know why I've been chosen to go through so much struggle and pain but I have to believe it's for a bigger reason. God let me live for a bigger reason and it gives me even more hope that I will get through this cancer drama. This is definitely not how I thought my life would pan out but He gave me my dream man, my dream wedding and my dream honeymoon so while I am in pain I am also so happy for all those things. Pictures of the wedding and honeymoon to come!

Monday, May 23, 2011

The Balancing Act



Wow, my last post was sad, but that's how I felt that day...sad and depressed. And then as my mother told me a week later while laughing, I got my weave the next day and all was good! I went from sad to Beyonce in a few short hours. It's amazing what some hair can do...at least for me...but one of the reasons this was so hard in the 1st place was losing my hair...and as I make the transition back to having hair that looks "normal", each step (wig, baby hairs, hairpiece and new curls) has made me feel more like myself again. Why am I so shallow?? Who knows, but it's a part of me and always will be. I didn't take any pics of me of me in the wig and tried to delete any pics anyone else took, but as soon as I had some more hair, I was right back in front of the camera...the old me was back!

Losing my hair is still a fear for me, especially when the threat of another transplant looms in the distance. That is a possibility some day, but I can't focus on it now. Losing my hair was so devastating, I can't bear the thought of going through it again. Plus my new hair is so soft and curly!! And a big part of the hair drama was wrapped up in my wedding...I've had people tell me, "oh get a fabulous wig", oh you can wear a veil/scarf" and every time I wanted to scream at them, "NOOOO". That is NOT how I imagined I would look at my wedding, that's not how I want Ross to see me as I walk down the aisle. Thankfully, the good Lord has allowed me to have my dream, the weave (while very expensive!) is very natural and when I look in the mirror, I see the girl I always invisioned on her wedding day and I can't tell you the joy that gives me.

So when I think of the wedding, the hair, the chemo, the scans, work, friends, family, LIFE! I'm like how do I balance it all?? I feel like I'm several different people split into various areas of my life...going to the hospital for treatments, planning the wedding, and living my regular daily life. It's exhausting to have this balancing act and I still can't believe this is my reality! But wedding wise, I'm in good shape (ok, a little stressed out, but that's just me), we get married in a week and a half and then go to Greece for our honeymoon. Praise God for allowing the honeymoon to take place now, because there was a time I wasn't so sure. I had my bachelorette weekend in Miami a few weeks ago (some pics to the right) and it was soooo much fun! Just what I needed to get in a good place!

Of course, with every up there is a down. I found myself bawling this weekend as I watched an Oprah episode recapping an old show with a mother who died of breast cancer...I had seen the old show pre-diagnosis and it was really sad then, but it broke my heart now and most importantly, it scared me. I kept thinking, I don't want to die. I don't want to die. And I don't feel like I'm dying, most days I feel fine except for my persistent cough and the fact that I get tired easily when exerting a lot of energy. But the fact remains that there is still cancer in my body and it has to get out or I could die. And that's so scary, almost incomprehensible, unimaginable and horrifying all at once. This is coming from a person who had panic attacks about death as a child. I'm not ready to confront that...at all. And all the more frustrating is that my last PET scan showed my most recent treatment was a "wash" as my doctor called it, because the disease got smaller in some areas and larger in others, so he didn't want to continue with it because it "kind of" worked. Therefore I'm on a maintenance drug weekly and steroids while I'm in Greece to keep the disease at bay until I can start a new drug called SGN-35. It's about to approved by the FDA and supposedly a wonder drug...but I've heard that before, so we'll see. The good thing about this disease is that my doctor is amazing and on the cutting edge of all things lymphoma and they are constantly coming out with new drugs. He even told me that some people with lymphoma are being treated as though it's a chronic disease, getting treatment for a year and taking 2 years off and then going back to treatment when they've come out with a new drug. So there's hope that I could do that too, but honestly I just want to be done, I want to be cured damnit! And he told me that's still possible, so I continue to perform my amazing balancing act until that day comes.

Friday, April 15, 2011

How do you feel?

I'm...Good, Fine, Bad, Sick, Nauseous, Gross, Indifferent, Ugh, I don't know?? "How do you feel?" has become such a loaded question for me now, because honestly it changes everyday, sometimes within one day. I can feel fine physically and a mess emotionally or vice versa. And often I don't want to think about it, the question forces me to analyze my situation and qualify all my emotional and physical feelings into one answer. Yet it's a question I'm asked often. And I don't know the polite way to tell people to stop asking me (except maybe to write a blog post about it...lol), because I know it's coming from a good place, they are truly concerned about me and want to know how I'm doing. I'm sure if I met someone else in my position, I would ask them the same thing when I saw them, it's just that for me, it's not a simple question. Early on in the process I had to ask my parents to stop asking me how I felt unless I offered it up myself because I found that the moment someone asked me, I immediately felt sick. It was such a psychological thing, but it felt so real in my stomach. I've read that nausea is partly in your brain, but it sure doesn't feel that way!

I don't know, I feel like I've been such a b#$&h lately because I don't know what to feel or how to feel and when I do feel nauseous for days on end, I just want to cry. And then there's the wedding. I just want it to be over, I'm sooo ready to get married. I'm tired of thinking about it, stressing over it, but mostly I'm tired of worrying about how my treatment schedule is coinciding with the most important event in my life. I've said it before, but I'll say it again, it's not fair. It's simply just not fair. I'm simultaneously picking out table linens and getting chemo...what the hell is wrong with this picture? I've been through a bunch of emotional ups and downs throughout the wedding planning process because of my health situation, yes it is a source of happiness, but it also makes me sad because of everything else that is going on. I have a great wedding planner and she's been working hard to make everything run smoothly (thank you Heather!!), but the worse is when I'm upset or depressed about the cancer thing and someone asks my how the wedding planning is going. Argh, I just can't handle it sometimes. There's just such a dichotomy in my life right now, sometimes I don't know how to deal. And once again, I can't get mad at the person asking the question, because they just care about me and they probably think talking about the wedding is a happy thing. And it is, I can't wait to marry Ross and celebrate with all my friends and family, but there will be a huge sigh of relief after it is over and I don't have to think about it anymore. We can just be husband and wife and move on with our lives. At least then I can stop feeling like the poor little sick bride. Maybe that's a little Bridezilla crap talking and I have no idea how I would feel right now if I wasn't going through a health crisis while planning my wedding, I've been thinking about my wedding since I was a little girl and I never thought I would feel this way, but I also didn't expect to have cancer so my world has definitely been rocked.

I'm also probably anxious because it's that time again...scan time. I've lived my life in 2-3 month increments for the past year and a half and it's torturous. I can hope and pray that everything is ok but until I have a scan, I wont really know. I have one in 2 weeks and I'm understandably freaked out. When I started this new treatment, my night sweats went away and my cough got much better, so I was really positive. But my cough never fully went away, it's not as bad as before but it's scaring me. So this is the time when I start dreaming about hearing the doctor say bad news. Ross says I shouldn't even say bad things out loud because it makes it more real for me, but it's so hard. I find myself walking around the city in a daze, thinking about my future. And it doesn't help that I see cancer everywhere, even as I try to avoid it. While watching E! News, reading my People magazine and reading my US Weekly, they all covered a famous director who recently died of lymphoma. I saw it once and tried to ignore it, but it kept popping up in all the media I consume and then I freaked out. It's definitely a mind game trying to stay sane while going through this.

That's not to say that good things aren't going on in my life, it's just that for me, every good day still has a dark cloud lurking over it. However, I had a great bridal shower last month in Charlotte and I'm really excited about going to Miami for my bachelorette party in May. Ross had to remind me that I'm not alone today even though sometimes I feel so alone. But I guess if I was alone, then no one would be asking me how I felt!

Tuesday, March 22, 2011

My heros





Sometimes when I think about how long this journey has been, I get so sad and depressed. I can't believe I'm still in this dark place where I wont know how I feel from one day to the next and it gets harder and harder to remember my so-called "normal" life...anything "pre-cancer".

Last week I started the new therapy treatment, an immunutherapy called Rituxan and a chemotherapy called Bendamustine. This process will last for 6 weeks and at that point I'll be reevaluated to see where radiation fits in. I'm grateful for every day that I'm not in the hospital, because if I had stayed with my old plan, I would be writing from a hospital bed right now, not the comfort of my own home. I hold on to that thought because these last few days have been rough. I also have to take shot called Neulasta which increases the white blood cells that are lost through the other therapies, but it can also cause extreme bone pain--kind of like you had the worst boot camp workout and every muscle in your body is sore. So Sunday I literally couldn't get out of the bed, I was so sore. I think I could have handled that because I've been sore before, but on top of that, I had horrible nausea. I haven't had to deal with a lot of nausea throughout my ordeal and I consider myself lucky because when I do feel bad, I usually eat something greasy and I feel better. But my old "hungover from alchol" tricks didnt quite work this time. There is no relief, just constant yucky in my tummy. I didn't even want to talk to Ross or my parents who called because I couldn't explain how gross and sick I felt. It just made me feel worse to talk about it. The anti nausea meds I took felt like a joke, a placebo for those who really feel like they will work, and thus this weekend I felt myself slip in a downward spiral of "here I am again", hanging over a toilet bowel and crying, praying that I would throw up just so I would feel better. It's hard because the mind and body forget. I hadn't felt this bad in a while and it just hit me all at once and made me so upset. I told myself that I've been through worse and I can get through this, but its hard when sleep is the only thing that makes the pain go away.

So I stayed home from work to rest although I complain to everyone that resting never makes me feel better. And then today I dragged myself to work in an effort to push through the pain and not fall down the slippery slope of sickness. I was definitely a little shaky, but got better as the day went on and spoke to my nurse about getting a stronger anti nausea med which *fingers crossed* has seemed to work better. Then towards the end of the day I got a great email from my best friend Dani with pictures from The Big Climb in conjunction with the Leukemia & Lymphoma Society that she did with her husband and little girl Payton (my future flower girl!) in my honor on Seattle, WA. It was such an honor to see that they did something so great in my honor and I can't thank them enough for being my heros...Kwame, Danielle's husband, climbed 69 flights of stairs in 13 minutes! Talk about inspiring. I never thought my name would be on a charity t-shirt, so its a strange mix of sadness and amazement, but when I see Payton with her "Team Auntie Morgan" shirt on, I can't help but smile.

Tuesday, March 8, 2011

A New Direction

So my plan has taken a turn. After gradually trying to make myself accept the transplant, the hospital stay and all that it entails, I decided to get a 2nd opinion just for kicks. A friend recommended her doctor and then another friend I met on Facebook recommended him as well, so I figured it couldn't hurt to see what this doctor had to say. I will say that I was a little nervous because I had another 2nd opinion last year and all it did was confuse me, so I didn't want to be put in that position again. However, I heard great things about this doctor, so I forged ahead.

I had to wait like 3 hrs to see him, but as soon as he walked in the door I liked him. He told me that he doesn't usually like to do another transplant within a year of the first transplant because they're so toxic. Instead he recommended a combo of 3 different therapies, one being radiation, which I have never had. He seemed confident that this could be the key to beating my stubborn, resistant disease. I had heard that he thinks outside the box and looks for new ways to beat the disease. I didn't even know what to do as I listened to him. I felt so overwhelmed, so in disbelieve that there could be another option, that I started to cry. He hugged my shoulder and said it would be ok, and you know what? I believed him. The fact is, no one has a crystal ball, no one knows how this treatment will really work, but I felt something in my gut that said I had to try.

The next day I went back to my other doctor and explained to him this new treatment, he said it could work and shrink the disease but it could not, but at the end of the day the decision was up to me, whether to go forward with the transplant or try this new treatment. The final straw was when my current doctor said that I did have more disease than he would like me to have going into a transplant and it made it feel like I needed to try something else to kill this thing. Even though I hardly feel qualified to make this life altering decision, it was all on me. So I decided to go with the new doctor. First up, I have to have another biopsy to determine if my disease is CD20 positive, this is a type of protein that is present in some lymphomas and make it more resistant to standard chemo. Then my mom is coming to town and we'll meet with my new doctor again to discuss the treatment. It's scary but exciting to be on this new path. I really believe this could be a turning point for me.

This weekend I'm going home to have my bridal shower, finally a ray of sunshine in this storm I've been in. I stopped getting excited about it after everything went down with the bad pet scan, but I decided to get happy about it again. I think it's time to have a little fun.

Sunday, February 27, 2011

Fighting for a cure



Well this isn't the post I had planned on posting, I had actually written another post prior to hearing the results of my scan that celebrating being cancer free. I was trying to "speak" my healing into existence in the hopes that I could post it afterwards. But alas, that's not the case. My Feb 24th scan was "better" than my previous scan, but I am still not yet in remission. I feel like a broken record by continuing to write these sad postings, but that is my situation. The silver lining is that my doctors have found a donor for me, but the negative part (at least in my mind) is that I have to have another stem cell transplant, this time with the donor's cells instead of my own cells. This means another stay in the hospital and last time was so traumatic for me so mentally I am scared. I don't want to be scared because I don't have a choice, but that place really brings me down. However, I know that I am lucky and blessed to have a donor who is a near perfect match (the only way he/she could be more perfect is if they were a sibling or a twin). And it's happening quickly, sometime in early March, so I am preparing myself for it.

So last night Ross and I attended the Leukemia & Lymphoma Society's annual black tie/casino night gala (see pics above). I bought the tickets in January, of course hoping by the time I attended I would be cancer-free. But I knew we would still go no matter what my results were because I wanted to be involved. It was a sold-out event with over 600 people and it was great to see how much money was raised towards research for people with blood cancers. I wore a dress I borrowed from my coworker Lisa (thanks Lisa!) and got tons of complements, so that of course made my night. Ross and I weren't able to dance too much (I kind of swayed side to side) because I do get tired easily and need to sit down, but we did gamble a little bit so that was fun. The only thing I wish they had were speeches from cancer survivors because selfishly I've always envisioned myself at this event speaking about my victory over cancer! So maybe I will make that suggestion. It was a great event and I'm so happy that we were able to get dressed up, go out and have fun.

The sermon during church today was very poignant for me, it was about the fact that your current situation is NOT your final destination. It is NOT the end. And that was what I needed to hear, I'll keep in fighting, keep on pushing through. And I will have my victory.

Thursday, February 17, 2011

I AM HEALED

I have been weary this last month or so. Every day is a struggle just to get through it. Every day my body feels differently, whether it's coughing, feeling nauseous, or feeling weak. I feel like I'm dragging my body all over New York City and I'm over it. And that's just the physical. The emotional is so much deeper. So I've been wallowing in it, I've been letting it overtake me and I'm sick and tired of being sick and tired. The amount of time I spend thinking and obsessing over this disease is crazy, it has taken over my life. My scan has been scheduled for Feb 24th and I'm freaking out. Part of me wants to stay in the place of the unknown because that somehow feels safer than the known. I've been down this road far too many times and I just want to hear good news. I'm tired of worrying about it, thinking of the day I have to wait in the doctor's office to hear the results. It's beyond terrifying. The worst fear I've ever known. I've read lots of spiritual books and healing verses but I don't know if I've been putting into practice everything that I've been reading. Why? Because when you feel like crap for days on end, you feel like hope is gone. But I fear I've been letting myself stay in a negative place for too long.

So for this next week and half I've been trying to be more positive. One of the books I try to read daily says you must confess that you are healed and you will be. You must put faith in the fact that God will answer your prayers. So I say I am HEALED, because words have power and I ask everyone that reads this blog to say the same thing. It's so easy when someone asks me how I feel to say, "I feel awful", it's sooo much harder to say, "I feel good!", especially when I don't but I am trying to turn it around and say that. Because at the end of the day, I am still alive, breathing, walking, talking, moving and that is Good. That is a blessing. So how am I? I'm good, getting better and better everyday. I am healed, inside and out. I am strong and God has blessed me with so much in my life. I am choosing to speak Faith, not Fear and it's a struggle everyday, but I am trying.

I am Healed.

Saturday, January 22, 2011

Good days and bad days

It's been a rough past few weeks, mainly because I never know how I'm going to feel. The first day of the new chemo I felt great! I left the hospital, went to a bridal store to order bridesmaids dresses, ran a few errands and went to a Leukemia and Lymphoma society workshop. The next few days I felt fine and hestingly told everyone around me that I felt good. Then my throat started to hurt, then my head started to hurt, and then I didn't feel so good. The chemo can cause mouth sores and pain so I took some meds for that and started to feel better just in time for the next session of chemo. Once again I felt great! But 3 days later my stomach started to hurt and I had to miss a day of work. Now I'm on the break portion of the treatment and I have 2 weeks off from chemo which I originally thought I would feel fine during, but I'm so up and down. I would say I feel better right now but not 100% and I know it's the reality of the situation, i.e., chemo makes you sick, but it's still so frustrating. I felt soooo good over the holidays and I just want to go back to that normal feeling, I hate this half-ass, kinda tired, sometimes sick, yucky feeling I'm in--constantly. It's hard and I get upset because I tell myself to push through it, it will be over soon, but it's hard to see the light at the end of the tunnel.

And then I get a call last night from one of the nurses telling me that my white blood cell count was really low and they need me to take another medicine (I take like 6 every night, I feel like an old lady) and possibly some shots to boost the cells. UGH! He asked me if I was tired and I admit I don't feel my normal energy level but I had just come from the gym for a workout session and I've been taking swimming classes to stay active so I guess I didn't think I was that tired and my counts were so low. Low white blood cells means lack of energy and risk of infection. So now this thought is in my head that I'm a walking case of "infect me!" since my white blood cells were so low. Then I went to a friend's birthday dinner and club outing where I was the only one who couldn't drink (this new chemo doesn't allow for ANY alcohol anymore) and of course when Beyonce's "Get Me Bodied" came on I found myself breathless after dancing. I try to tell myself its mind over matter, but of course I woke up this morning feeling tired and like I had a cold! UGH. Must. Feel. Better. I have to remember I'm not like everyone else with tons of energy and tons of infection-fighting white blood cells and it sucks! I miss feeling good so bad!

I know this is how it will be for the next month and it's tough, but I pray and hope that I'm going through this pain and suffering for a good reason and it will all be worth it when i can finally say I'm cancer-free.

Sunday, January 2, 2011

2011--My Year!


It's hard to believe that it's finally 2011. This past year has been filled with so many ups and downs, it was an emotional roller coaster. I thought 2009 was bad because that was the year I was diagnosed with cancer, but 2010 took the cake. So I am more than happy to usher 2010 into the past and welcome 2011--which will be the last year I have cancer. I must declare it that this year I WILL be cancer free and rid my body of this disease. It's also the year I'm getting married (6 more months to go!), so it's My Year, a year of new beginnings, a new chapter, a fresh start.

The holidays are always my favorite time of the year and I was in pretty good spirits until I found out that Gemzar, the chemo drug I was taking, was attacking my lungs and landed me in the hospital for 4 days. It was awful. Even more so was the news that I could no longer take this drug since it was toxic to my lungs and I would have to move on to C-MOPP. This regimen is what was used before ABVD (the very first chemo that I had) and it has much more worse side effects than Gemzar. So finding out this news right before Christmas really upset me. Ross and I had planned to go to Charlotte and get a lot of wedding stuff done and now I had this on my mind. But Ross and my parents both emphasized that we would still have a great holiday and we wouldn't let this news stop us. And suprisingly it was one of the best holidays I ever had! I spend a week and a half at home with my family and it was just what I needed, a break from everything going on in New York. I felt such peace being at home again. Ross came into town after Christmas and since its very possible I will lose my hair again with this new treatment, I had frantically emailed my wedding planner Heather last minute to ask if there was any way that my photographer Tara could take our engagement photos while we were in Charlotte. Well God worked miracles in my life this past week because Tara agreed to take the photos even though she was sick with the flu (thank you Tara!!!!) and Heather got permission for us to shoot at this fabulous mansion in the area. These ladies made my day, it was so amazing how everything fell into place. Oh and there was a blizzard that left snow everywhere but I didn't want snow in my pictures (Yes,I can be a total bridezilla) and somehow, enough had melted by the time that we took them that it all worked out. Everything was perfect and I can't wait to see the pictures!! Ross and I literally had appts every day with different wedding vendors, sometimes two a day, but it was good because we got a lot done. And then I was a bridesmaid in my friend Eboni's wedding on New Years Day. So it really was a magical week for me, everything I wanted to accomplish was done and I couldn't ask for a better holiday!

It was bittersweet to say goodbye to my parents and my brother this morning as Ross and I headed back to New York. Tomorrow I start the C-MOPP treatment and I don't know what to expect. Will I be really sick? Will I feel really tired? It just sucks because I feel sooooo good right now, in fact I'm on steroids because of my lungs and I have a lot of energy, so I don't want to lose that. But I also want to move forward and be done with this once and for all. A friend from college who was fighting Non-Hodgkin's Lymphoma texted me last week and said his PET scan showed that he is cancer free and I am so happy for him and can only imagine how amazing that must feel, especially at the beginning of a new year. And I want that feeling so bad I can taste it! I can literally imagine writing the blog post, calling friends, sending emails, shouting on the rooftops that I'm cancer-free! (I'm smiling as I type this) So it's going to happen, I just need to get through this yucky stuff first. The pic above is of Ross and I toasting the new year, 2011 is Our Year!!