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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.