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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!