Stop the Clot!

Ross and I before the walk began

A few weeks ago I had the opportunity to speak at the 4th Annual American Business Women's Association Walk for Blood Clot Awareness Month in Brooklyn. The walk is a collaboration with the National Blood Clot Alliance, and I was their patient speaker. So I shared my story of the massive pulmonary embolism I experienced just a week after Ross and I returned from our honeymoon in Greece.

I was really excited (and a little nervous!) to share my story, so I was so happy that it turned out to be a wonderful event. It was a gorgeous day and several of my close friends came out to support and cheer me on. Since the focus of this event was about blood clots, and not cancer, I wanted to make sure that I spoke about my blood clot experience, but I also explained that cancer was one of the risks for clots.

Gorgeous day in BK with my girls: Tiffany, Nneka and Kamila

Ross was set to tape my speech but unfortunately his iPhone ran out of space in the middle of the speech...but, like the good husband he is...he continued to hold his phone up the entire time so I still believed he was taping and he didn't throw me off, lol! Because he knew that the first thing I would say to him was, "why did you stop taping!" So alas, I only have the very beginning of my speech and it's basically me saying my name, so not really enough to post. But as you can tell from the pics, it was a happy day. Ironically, in the days leading up to my speech I started feeling pain in my legs again and started worrying about clots. As I said in my speech, the blood clot has affected me far worse than the cancer diagnosis, because it was such a terrifying physical incident that I will never forget. So often, on my down-in-the-dumps, crying, sad days, I worry more about clots than cancer. Despite having so many precautions (being on blood thinners and having a filter in my lung), I don't know if I'll ever get over the fear of clots...especially if I feel a pain in my leg! It sucks to be so fearful of what's happening (or not happening) in your own body.

The Oglivie family! Close friends from way back in the day

A doctor who specializes in blood clots also spoke at the event. And in an awful ironic twist, he had a blood clot as well. Despite being a doctor who knew the risks, he still developed one and it just shows you that no one is immune to horrible things. The world is so scary these days with the Boston marathon bombing, the Newtown shooting, the North Korea threats...and then you have to worry about a war going on in your own body...sometimes it's all too much!

A quick cancer update: I just completed the 3rd cycle of the NAE clinical trial and according to the PET/CT scan I had on Friday, the cancer has now decreased by 28%! So although it's not a huge decrease from last time, it's enough for me to stay on the trial. I start cycle 4 next week and the first day of the new cycle is usually the hardest, so I'm hoping with my new pain meds, it won't be too bad. So that's it for now! The hope is that things keep getting smaller and smaller and we continue on a good path!

Celebrating a successful day with brunch in Brooklyn

My Brother's Keeper

Loving my new baby brother's fro in 1987

Growing up I always wanted a sister. I thought having a sister would be the best thing ever because we could share clothes, do each other's hair and play Barbies together. I would constantly tell my mom that she needed to have another baby--and make sure that it's a girl. She finally sat me down and told me that she wasn't having any more babies, so I better learn to be happy with my little brother! Frankly, now I'm actually glad I never got that sister...selfishly speaking of course...because all the physical transformations I've had to deal with in the past 3 years probably would have made me hate my sister. She would have remained the same as I lost my hair, lost my perfect skin and in some ways, lost my dignity.

So I guess it took cancer for me to realize that having a brother wasn't so bad! Lol...just kidding bro! My brother Garrett will always be my "little" brother. Like any big sister, it's hard for me to see my brother as a true adult. Despite the fact that he towers over me at 6'4",  he just graduated business school, he's living in Atlanta on his own, paying his own bills, and working in corporate America, I still see him as the eternal 12-year-old that drove me crazy. So it makes it even harder to realize that on March 24th, Garrett will turn 26. This is astonishing in itself, but for me, 26 is a milestone age because it's the age I was diagnosed with cancer. I often mourn those first 25 years of my life and the person I was. The way life was before it became so damn hard.

1999 holiday photo! Don't we all
have a pic like this? 

My parents (especially my father who has seven siblings) constantly remind me to check in on my brother because "he's the only one you have." And it's true. When I relapsed, I was told to have my brother tested to see if he was a match for me. If he was, I would received his stem cells through an allo transplant.

"Oh the irony," I thought. The brother that I had tormented growing up would now be charged with saving my life. God was definitely trying to teach me a lesson with this one! But sadly, Garrett wasn't a match. I just assumed he would be, and after learning that he wasn't, I soon became fiercely jealous of any cancer patient with a sibling who was a match. There's a sense of safety in knowing that your sibling will always be there to give you the stem cells you need exactly when you need them. As opposed to a stranger, who may not be available if and when you decide to push the button to move forward with an allo. I am still lucky, having two 9/10 matches and one 10/10 match, but in the back of my mind I worry about those potential matches. What if something happens to one of them? What if they change their mind? What if they (God forbid) get cancer themselves? Hey, it happened to me. I've been in the Be A Match registry since 2001 and was diagnosed in 2009.

When did he get so tall? Garrett and I in November 2009

So if my brother had been a match, I could watch over him, make sure he was being healthy, make sure he was doing all the right things, and yell at him if he wasn't. Of course, I still do that, because all I do is worry about my friends and family and their health. Sometimes I'm glad it was me who got sick, because I'm vigilant enough to go to the doctor when something is wrong. Would Garrett have reacted the same way? He almost made my heart stop this past Christmas when he casually mentioned to me that he had a "swollen lymph node" under his arm. Those exact words I google'd 3 years ago and led me to a cancer diagnosis. I berated him about it and he said it went away and he was fine. And most likely he is, but hearing those words from my little brother on the cusp of his own 26th year frightened the crap of out of me. After all, we grew up in the same house, ate the same food, and were exposed to the same environment, until I moved away for college. Garrett was actually the "sickly" child in our house, having asthma throughout his childhood, even though he swears he's grown out of it now. So even though Hodgkin's isn't genetic and no one really knows the cause, I still worry about him and if he's getting regular checkups, and doing the right things. Because the only thing more frightening than one sick child is two. I can't even imagine. My father actually has a colleague who is dealing with just that. His daughter has thyroid cancer and his son has Hodgkin's. WTF. How does that happen? When I hear stories about siblings with cancer at the same time, or a mother/daughter or husband/wife, I think, "how much can one family take?" Just not fair.

So I pray that as Garrett turns 26, his health remains unblemished. He gets to hold on to a little of the carefreeness that I no longer have.  Of course he's not completely naive due to the fact that his big sister was diagnosed with cancer at such a young age, but I hope that he has a long, healthy life in front of him. Because health is the best birthday gift you can get!

Here We Go Now

Naughty By Nature, not cuz I hate ya! 

One cycle down! I always have a song stuck in my head when I think about this "situation" and for now, it's Naughty By Nature's "Feel Me Flow"...so random right? I'm more of an R&B girl, but the "here we go now" line keeps flowing through my head because here we go again with another treatment. Who knows. I guess it's a positive thing that I want to sing and dance while going to treatment?

So I just completed Cycle 1 of the new NAE clinical trial and things are going well. Having never been on a clinical trial before, I was not used to a pharmaceutical company who runs (and pays) for the whole thing wanting to know every.single.thing about me and my body. That, my friends, means that I am inundated with EKGs, blood work, urine monitoring and vitals almost every day. The first week I had some 8 hour days, but surprisingly they weren't as bad as I thought. I'm working remotely when I'm in the doctor's office and I love my medical team, so we had a lot of laughs throughout the day...as they also apologized about all the hoops I have to go through. But I try to remain humbled because in my 3 1/2 years in this cancer game, I've witnessed so many new drugs become available for this disease, so it's only right that I help partake in a trial that will not only help me, but future patients.

*Clears throat* That being said, I still complained to anyone who would listen about how this trial is messing up my schedule! It was hard for these first few weeks to go back and forth to the doctor every day (as opposed to every month when I was on Revlimid) so patience is definitely needed.

And so far it's working! Although I usually have what us cancer folk refer to as "scanxiety" before a PET scan, this time I didn't...I just assumed the NAE drug would prove to work. For me, I usually respond to the first few cycles of a new drug and then have problems further down the line. But I shouldn't take a good response lightly as I realized that it may have not worked and we would be back to square one. In a clinical trial you get PET scans far more often than you would in an FDA-approved treatment (where you usually get scans every three months), so one month into the trial, my cancer has decreased by 14-15% which I'm told is good.

Now as I start Cycle 2, I will only have to go in twice a week for treatment, which makes me very happy. The main side effect with this NAE inhibitor is bone or muscle pain, which for cancer patients, feels exactly how you feel when you take a Neulasta injection. But with Neulasta, the bone pain makes sense because your bone marrow is pumping up your white blood cells, thus the pain. In NAE, they are not sure why this happens. I wasn't too worried about the bone pain going into the treatment and neglected to fill my prescription of hardcore pain meds after the first day (as my nurse practitioner told me to) because I assumed I would be ok. Uh no. For people who are so lucky to not have experienced a Neulasta injection, I have been describing this feeling like working out with Jillian Michaels on The Biggest Loser for 10 straight hours. Sooooo sore! That first night I was cuddled in a ball on the bed, shocked by the pain I felt in each of my muscles, from my toes to my throat. For me, the annoying thing about bone pain is that you feel like you got a good workout in, but in reality all you did was sit in an infusion chair. Usually I like to feel sore after a workout because that means I really did something, right? But pain and no workout? Sucks.

Luckily it seems to subside by the next day and for my 2nd treatment, you better believe I had my pain meds in hand. They definitely help, although they also make me uber sleepy...that kind of drowsy you get from cold medicine. It's such a strange process. I got a little sad the first day because it's been so long since I've had side effects, plus I was nauseous, so all I could think is "#$&*%". LOL! Every curse word in the world ran through my brain because emotionally I'm pissed. I kept thinking that I wasn't supposed to be at the doctor's office right then, right in that moment. I was supposed to be at work and taking Revlimid each night.

Today I had a lot of bone pain from my treatment yesterday. It's so strange...I'm perfectly fine right after treatment...so much so that I totally forget I even had a treatment until about 6 hours later when it just hits me. The pain comes on slow...like an ache in my shoulders and my triceps...and then it spreads to my legs, my stomach and my back. I swear I feel like I should be super toned after this trial based on how much my muscles hurt! It's so crazy. I keep flexing my arms in the mirror when they hurt because it legitimately feels like I was lifting weights with the big boys.

So that's it for now...despite the pain, I seem to be tolerating the drug pretty well and it doesn't affect my blood counts too much. So we will stay on this path and see where it takes us!

The Treatment Merry-Go-Round

Round and round we go...

Here we go again...the new year hasn't been so good to me thus far. It started off with the abrupt news that my company stopped using the speciality pharmacy that I used to receive my Revlimid, the (very expensive) medication that I have been taking for the past year. And the new pharmacy denied the request for Revlimid because it hasn't been FDA approved for Hodgkin's and they didn't want to pay for it. Well, clearly they don't have the stats that my doctor has on the drug, because it has worked wonders with lots of people (including me!). So I was forced to (along with the help of my fabulous medical team) call the insurance company, the prescription company and the pharmacy multiple times a day, for seven days in a row, to tell them in a nice but firm tone how imperative it was that I receive this medication. Like, life or death people!

I don't write about the insurance part of managing a disease a lot, but it sucks. Seriously sucks. And I'm a lucky one. I've spent many hours calling my insurance company, questioning bills, begging someone to call me back, yelling, emailing, faxing, etc. It's a full time job just to handle the insurance part of cancer, and I'm a smart person who knows how to handle issues like this, but what if I wasn't? I thank God all the time that A) I have health insurance and B) I have a good head on my shoulder and I know how to curse someone out if need be :)

So I finally ran out of my Revlimid and yet the pharmacy still had not approved the prescription. I thought I was going crazy, because I started to think that this was a sign of bad times ahead for me. The fact that I couldn't get my drugs (I sound like an addict) was a sign that I would no longer need to take the medication. You see, my CT scan was scheduled for Jan 25th. I was out of the Revlimid pills for 8 days before it was finally approved and by the time I finally received it and restarted the medication on Jan 8th, I was scared. I started feeling more pains in my chest, waking up sweaty, questioning if it was a night sweat, and freaking out mentally. I got a letter in the mail from the pharmacy that Revlimid was approved--but only until April. "Another sign," I thought. I won't need it by April.

Unfortunately I was right. I'm back on the treatment merry-go-round. On Jan 28th, my doctor told me that my CT scan was just "okay". There were areas in my chest that had improved, but areas in my abdomen that got worse. They weren't huge increases given that my last scan was in July (six months ago--the longest I've ever gone without a scan!) and my SED rate was 7 in November, it's 26 now :(, but an increase is an increase. And my doc doesn't play games with that! I was on Revlimid for one incredible year where I felt....NORMAL! It was amazing, the best year of my life, or at least my life with cancer,...which I said to my doctor and he laughed, looked at Ross and said, "I thought you were going to say because of him." Oh. Yes. Because of Ross too :)

So it sucks to find out that this miracle drug, which was not a chemo drug, which came in PILL form, which I experienced almost no side effects, had failed me. I failed me. My body failed me. Back on that damn merry-go-round. If you can't already tell, I'm angry. But I'm not sad. As annoyed and pissed off as I am about this...this is the first time I received bad news and didn't cry. I don't know if I will break down next week and cry but I'm not that sad. I think I've accepted (for today) that this is just my life for now. I hate it and it's not fair, but I know it's all for some bigger reason, bigger purpose.

And so we move on. To another treatment. This time I'm starting a clinical trial for a novel inhibitor called NAE for short. It's not a chemo, but an enzyme drug that will go after the cancer cells. The funny thing is that I'm not even nervous about a new drug, I'm just assuming I will feel fine...I have no idea why I feel this way though, I think Revlimid has clouded my judgement and I hope I'm not in for a big surprise. The part I'm focused on is how the drug is administered. Revlimid, I took at home every night along with my calcium and fish oil pills, as I was watching Real Housewives or Chelsea Lately. NAE requires me to be hooked up to an IV twice a week.  I.Hate.Going.To.The.Doctor.For.IV.Treatment. I have no patience! I start freaking out! I lose my mind! I start yelling at nurses! It's not my shining moment. PLUS, because this is a trial...that means I will be back and forth to the doctor a lot of blood work and monitoring. But I have no choice. My medical team believes this trial is the next best thing for me, and hopefully, if I do well, I could go back to my buddy Revlimid. UGH! The patience I will need when I start the trial next week...help me!...hmm...maybe they can just put me under some local anesthesia and I won't remember anything??

One silver lining is that today I finally met my friend Bekah in person. Bekah is another fellow Hodge Warrior who has been fighting for 6 years. We connected via our blogs, email, and through a Facebook group of Refractory and Relapsed Hodgkin's patients. This Facebook group is amazing! We support each other through the good and the bad, plus we ask for opinions on treatments, doctors, and trials. Bekah is an amazing person who always spreads love and light to everyone else--even in the midst of her own pain. I've learned so much from her and watching how she handles herself with such grace...plus she's super smart and knows much more of the medical jargon then I pay attention to :) So it was amazing to see her in person at our doctor's office today! (We both see the fabulous Owen O'Connor) We chatted like old friends...cancer bonds people instantly! It's kinda crazy. I have no qualms about telling other Hodgkin's patients my deepest, darkest secrets (sorry Ross!) because I instantly feel connected to them.

Soooooo that's where we are. Another year, another treatment. Boo.

Hair Today, Gone Tomorrow

"How you doin?" in my best Wendy
Williams voice. This was August 2009,
right after I started chemo, at the wig
 salon where Wendy is rumored to shop!

Anyone who has read this blog knows how I feel about my hair. I was VERY sensitive about losing it and banned everyone around me from talking about hair--even if they were just complaining about their own hair! ("At least you have hair" is all I could think.) I have to laugh about it now because some of my friends still get nervous talking about hair around me since I've been known to flip out on them in the past...but hey, I'm a work in progress!

I'm not going to lie, hair was one of the first things I thought about upon my inital diagnosis. The idea of being bald frightened me almost as much as the cancer diagnosis itself. Today, although my hair has grown back and it's actually softer and healthier than it was before, I live in fear of losing it again, so I can't fully enjoy it the way I wish I could. Some days I still look in the mirror in shock to see actual hair growing out of my scalp! All those years I practically destroyed my hair by coloring it, relaxing it, flat ironing it, crimping it, braiding it and lamenting over the fact that it never looked the way I wanted it to, I never imagined that one day I might not have it. So I try to keep it all in perspective. Anytime I find myself complaining about my hair, I have to remember moments like the day I ran into a Rite Aid around the corner from my house practically in tears. It was an extremely windy day, and I was simultaneously trying to hold on to my wig and hold my skirt down from blowing up in the wind, so I ran into the drugstore to escape. I just knew everyone walking down the street could tell I was holding on to a wig. By the time I made it home that day I was a sobbing mess, terrified that my wig might somehow fly off in the wind (I realize now that probably wouldn't happen) and my skirt would fly up (probably could happen) and I would be exposed to the world.

Getting my hair braided before
the wig placement

So I was both amazed and inspired to see Diem Brown, former star of the Real World/Road Rules Challenge on MTV and two-time ovarian cancer patient document her hair loss with a video on People.com. Diem had beautiful long blond hair before she lost it to chemo back in 2006. I remember watching MTV as she removed her wig on national TV during a swimming challenge. Not having any idea I would go through the same journey a mere three years later, I remember feeling sorry for her and thinking, "Damn, I could never do that." Diem beat ovarian cancer, started an amazing gift registry for medical patients called MedGift and went on to become an entertainment host in LA...and her beautiful long blond hair grew back. I follow Diem on Twitter and when she reached the pinnacle five-year survival mark, I admit it, I was jealous. I was jealous that she could finally put the fear of cancer behind her and focus on more important things in the world like Kimye aka Kim Kardashian and Kanye West (I kinda love them together - it's like they're made for each other!) with her job in LA. So imagine my shock (and guilt) when I learned that Diem had relapsed--seven years after her initial diagnosis. This is NOT supposed to happen. She was a survivor! After five years you're supposed to be able to breathe easy and finally move on with your life. Unfortunately that was not the case.

The final result. I'm smiling because
I still have my hair and thought
I would never have to wear the wig.

Diem has been documenting her second battle with the big C with blogs and videos on People.com. She also went public with her controversial decision to delay treatment so she could harvest eggs first. Three years ago I might have said, "Girl, forget those eggs, you need to start chemo!" But now I get it. Cancer doesn't get to win. Having a family is so important to many people and by harvesting her eggs, she is doing what she feels in her heart is the right thing to do. In the video below, Diem shows how her hair starts to fall out after chemo and it's heartbreakingly real. I can't even begin to explain how horrible it was to look in the mirror and see an unrecognizable bald girl staring back. Honestly, I remember the day the last of my hair fell out and every day after that is like a blur...I literally don't remember how I looked without the wig...I must have mentally blocked out that visual. So I admire Diem so much for having the strength to put herself out there in such an incredible way.

Diem's video of the stages of hair loss during chemo:



And speaking of hair, I've been blogging for Carol's Daughter's new website TransitioningMovement.com about my own hair drama. They are launching a new web series for the website called THE CURL. It's the first show of its kind, a show that, when put together, defines, entertains and exposes viewers to natural hair terminology and hairstyles in a comprehensive way, while getting a sneak peek into the lives of women who share their own candid, incredibly diverse hair stories. This series is for every woman-sister-mother-friend who has ever wondered,“What exactly am I going to do with my hair?” and “How can I achieve my own, unique look? The series is launching next week!

Check out the trailer here:

Freezing Time

My apartment looks amazing on TV! Lighting is everything 

Thursday, November 1st marks my 30th birthday. And as I approach this milestone birthday, I can't help but feel the same way I have felt for the last three birthdays...shocked and disappointed that I'm celebrating another birthday with cancer. I've been dealing Hodgkin's Lymphoma for so long now, it almost feels normal...except it's totally NOT normal! When I was diagnosed at 26, I expected that by the time I turned 30, this cancer mess would be nothing but a nasty memory. But instead as each year has rolled by I've realized that life (or maybe just my life!) just isn't that simple.

Some people may say that I'm lucky to see 30, considering that I was diagnosed with cancer more than three years ago. And while that is very true, it's also heartbreaking to feel like you will never get away from cancer. I. Am. So. Over. It. All of it! It makes me sick to my stomach to think of how many times I thought, "by this time next year I'll be in remission!" only to reach next year and still be fighting. I know what the alternative is, so of course I'd rather have cancer for 20 years than not be here at all, but with every birthday, every anniversary, every holiday, every New Year's Eve, I always wonder where I will be in my life the following year.

Even though I have done my best to live a positive (and of course fabulous) life despite cancer, some days I can't help wishing that I could go back to 26 and freeze time right before my diagnosis, right before my life was turned upside down and changed forever. So it's ironic that "Freezing Time" is the name of the story that I was featured in tonight on NBC's Nightly News. The story is on ovarian tissue cyropreservation and how this amazing procedure is offering female cancer patients options for having a family after cancer treatment.

I met with Dr. Kutluk Oktay, one of the pioneers in the procedure, in Feb 2010 right after my first relapse. He performed the ovarian tissue cryopreservation surgery in an effort to save my ovarian tissue before my autologous stem cell transplant. In the midst of everything else I was dealing with, removing one ovary for the future seemed pretty simple. Save an ovary, put it on ice, go kill cancer. Done and done. Dr. Oktay said I actually woke up from the surgery smiling! I tend to be very happy after anesthesia, go figure.

I didn't think about my fertility that much for the first two years of cancer treatment. But now, on the cusp of 30, I think about it all the time. More and more I find myself thinking about babies and how/if/when we can start a family. While I am in no rush to have a child right at this moment (and frankly neither is Ross!), it's scary to not know if it's even possible...especially when everyone in the world (or at least on Facebook!) is pregnant. And getting older is only a reminder that I don't have forever. The ovarian tissue procedure is still very new and nothing is guaranteed, so my ovarian tissue may or may not result in a live birth, and in fact I don't even know if I can carry a baby myself, so there are a lot of variables here. But regardless, I'm glad I did it because no matter what happens, it gave me a little spark of hope.

Watch the segment below (Dr. Nancy Synderman said my name! I love her!!):

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Stronger

This video was shared on Facebook and makes me smile (and cry a little bit). A young cancer patient named Megan Kowalewski made this video after she relapsed with Hodgkin's Lymphoma and it was shared over 15,000 times on Facebook.

I always loved Kelly Clarkson's "Stronger" but the song becomes even more poignant when the lyrics are applied to the cancer journey. I watched this video at least five times and loved it every time. I love her strength and spirit, and wish I could have been there dancing with her! The only problem is that when my spin instructor plays "Stronger" during spin class, I always think of this video and then tear up a little bit.

Enjoy!