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Monday, September 23, 2013

Coffee and Conversation

This past week I had the opportunity to speak as part of "Coffee and Conversation," a breakfast event in conjunction with the Southern Women's Show in my hometown of Charlotte. Coffee and Conversation is part of the Belva Wallace Greenage Cancer Foundation, founded by Belva Wallace Greenage, a two-time cancer survivor who is living (and thriving!) with Stage IV metastatic breast cancer....talk about inspiration!

Coffee and Conversation program


Belva asked that I share my story as part of the Coffee and Conversation event because the theme was "claiming your best life" and that's what I try to do with my blog. I spoke alongside Moira Quinn, a breast cancer survivor, and Dr Russ Greenfield, an integrated medicine doctor...and it went really well. Although my father did tell me I went a little long (lol, thanks Daddy!) but truthfully I could have talked for days...for some reason when I get started talking about this cancer journey, I can't shut up!

It's strange...sometimes I do still feel ashamed about it, but once it's out in the open I can talk about every little scary, sad, funny, crazy, ridiculous thing I've been through...and trust me, there have been a lot. Sometimes I worry I sound too blase about it, because I can say I had a stem cell transplant, a massive blood clot and 4 years of chemo without batting an eye...and I forget how horrifying it can sound to someone who is hearing it for the first time. I often say that it doesn't sound real...it sounds like a book or a movie, but in fact it's 4 years of my life! Which is both really sad and really amazing.

Mid speech


And that juxtaposition was the spirit of my speech and the event...learning the deal with this awful circumstance and (hopefully) showing that you don't have to let it define you. I always laugh to myself when people say, "how do you do it?" because I think, "what other choice do I have?" I'm still me. I still have hopes and dreams and plans for the future. Frankly, I don't know what else to do but try and live my life. That doesn't mean it's always easy...some days I feel like I am the saddest person on Earth. But other days I realize how blessed I truly am. It's a constant battle for me every day as I struggle to not feel so sorry for myself and try to find the good in my life...through this awful situation I've gained a new platform and way to connect with other people. So for that I am grateful.

My parents support means the world to me


Unfortunately as I was getting on the plane to leave Charlotte after a great weekend with my parents, I checked my Facebook and saw that a fellow Hodgkin's lymphoma warrior had passed away. I never met Karin Diamond in person, but her story connected with me as we are the same age and diagnosed the same year. We also have the same doctor in NYC, so I kept up with her that way. I remember reading her blog when I was in Greece on my honeymoon and crying with a mixture of happiness and fear, as Karin was about to began an allo with her sister's stem cells. Since the allo, Karin has had a rough road. She was in and out of the hospital and dealt with a lot of pain and other issues. Her husband Craig was there every step of the way, and she wrote of how wonderful their relationship was, and what a great partner he was. I stood in the airport in shock on Sunday as I read Craig's farewell post on Karin's blog. He said she passed away at home, and she is finally at peace. Although I'm grateful she is no longer in pain, it just does not seem fair! I want to shout and scream about how unfair it is. And how scary it is. Why her? Why do things like this have to happen? How is she gone and I am still here? We have the same disease and it's just awful. She had so much life to live and seemed to be a wonderful person. I do take comfort in the fact that Karin traveled to Rhode Island for a vacation a few weeks before she passed...something she was determined to do and our doctor/medical team wanted her to do. She had a smile on her face as she went to the beach with family and friends and she had joy in her life...she truly did everything she could to "claim her best life" and for that I am grateful. Rest in peace Karin.

Thursday, August 29, 2013

Missing In Action



I know, I know, I’ve been a neglectful blogger! But no news is good news right?
And for the most part, it’s all good news. Since my last post in April, I’ve started a new job at a new magazine and I’ve been spending a lot of time at work, getting used to everything. But I’m really excited! The job is fun and I get to do a lot of interesting things, which is great. Plus, my new boss is a breast cancer survivor…and she worked throughout her diagnosis and treatment while planning her wedding…just like me! Imagine that? So it’s nice to come into a new job where someone really, truly understands what it’s like to balance your real, normal life with your not-so-normal, cancer patient life.

So that’s my official excuse for my long absence from my blog (and the one that I’ve been telling my mother every time she asked me why I haven’t posted) and it’s true! A new job has given me something entirely new to focus, worry and stress about that some days, (can’t believe I’m writing this) I don’t even think about cancer! So weird. It does cross my mind every once and a while of course, especially when dealing with new co workers who want to know why I’m not in the office some days. At my old job, I was already working there for a year before I was diagnosed, so I didn’t have to explain myself to everyone…so it’s definitely awkward when it comes up. My shameful secret (yes, I still feel that way…will it ever not be shameful?).

The other reason I’ve been MIA is because there wasn’t too much report. Up until July I was continuing on with the NAE trial and had two good scans in a row…although I didn’t want to make too much of deal about good scans, for fear that I would jinx myself. Then the other shoe dropped. My good luck ran out and the cancer started to grow again. Damnit! But, for the 2nd time after receiving bad news, I didn’t cry! Once again, I expected it…I got 7 good months out of the NAE trial with only a headache from the crazy schedule and a little bit of pain from the drug…but in the weeks leading up to the scan, my lower back hurt and I just didn’t feel like I was going to get good news.

And so we start again…this time I started a trial called TGTR, which is an oral medication! When my doctor said that, I didn’t even care about the bad news, because “Hallelujah” I was going back to an oral medicine! But before I could get too excited, he reminded me that I’m on a clinical trial, so it still requires a lot of time in the doctor’s office for blood work, tests and other fun stuff. Ugh, annoying schedule again! But virtually no side effects from this new med! Except that I have to fast before and after taking the meds and this girl likes to eat, but now I’m just really complaining.

I started the TGTR trial in August and so far so good…I have a scan in October, but I’m trying to stay positive that everything will be fine. Ironically, when I came in for my first day of TGTR, my nurse practitioner told me that a new scan I had the day earlier showed the cancer had decreased since my bad scan in July! I think the words, “it’s a miracle!” actually came out of my mouth as I mentally explored the idea that I.Had.Cured.Myself! As it turns out, I had an upper respiratory infection when I did the latest scan and apparently when your immune system fights an infection, it can inadvertently fight the cancer too! So why can’t they just inject me with the common cold you ask? Yes, I asked that too…not even joking. Researchers are actually working on this idea, so who knows what the future holds!

But as of now, I’ll stick with TGTR and the oral medication. And I promise to keep everyone updated as to how I’m doing…a little sooner this time! 

Saturday, April 20, 2013

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


Friday, March 22, 2013

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!

Tuesday, March 12, 2013

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!

Tuesday, February 5, 2013

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.