It's the time of year where the news programs are filled with "year in review" segments, predictions for the future, look-backs and all. I have a lot to reflect on this year but in a different way. I've been thinking more and more about the things that I was doing just before I was diagnosed and it really just baffles me. Just a couple months before, we were in Miami living the life at a wedding. Literally, the week before I was admitted to the hospital I was running with Sammy full tilt on a hot day through the neighborhood. No matter how much I reflect, it still just doesn't make sense and I suppose it probably never will.
The oddest thing is this whole transition from patient to survivor. I use the "survivor" term loosely as I'm still not completely out of the woods. I've been feeling a lot of fullness in my chest and having the occasional pains still. That led to an echocardiogram, which was all clear -heart's still strong - and now I go in for another PET-CT Scan on Monday - two weeks earlier than scheduled. Hopefully this will finally be an all-clear and I can get this constant physical reminder that is my port o-u-t out!
But I digress ... . What's so different about being "post-chemo" is that I no longer have that "eye on the prize" goal. There was always that light at the end of the tunnel - the 12th treatment - when I knew it would be over. However, now that I'm past that, I realize that it's not over and that it probably never will be. It's the issues that arise during survivorship that no one really talks about. I didn't get any preperation about the long-term effects. I suppose that's because every oncologist has enough bad news to dish out to you having to explain to you the fact that you not only have cancer, but you have to go through hell to treat it - nevermind telling you that your body and mind will never be the same. That would have been way too much to process at the beginning of all of this - inevitable system overload.
But now, that drive, that hope, that ultimate goal has faded because there is no longer an endpoint. I will forever be wondering if the cancer will remanifest itself. I will forever live with the long-term havoc wrecked on my body. I was listening to The Stupid Cancer Show this week. The episode was focused on "Who the Hell is Hodgkin?" A lot of discussion was centered around how high the Hodgkin cure rates are, but how toxic the treatment is. I posed a question in the chat room to the show's guest oncologist telling him that I had 6 cycles of ABVD and asking him about the long-term effects I could expect from it. He gave it to me straight - fertility problems, neuropathy issues (I still can't feel my lower leg), chronic fatigue, predisposition to other cancers, hormonal imbalances ... the list went on.
That's the thing about being a young adult cancer survivor. I'm not 80 years old and cured. I am only 27 and I thankfully have many, many decades of life to live still. But you don't hear a lot about how the hell you're supposed to handle all of these effects as you keep on living. There is so much positive and so much that I am grateful for, but at the same time I've also found myself getting very frustrated and very emotional at times. Like getting a cast off after many weeks of healing, I guess I naiively thought that I'd be able to walk away from this and get on with my life. Instead, this is my new reality and I need to set new goals with that reality in mind.
I don't believe in New Year's resolutions, but I do believe that this time of year gives a good excuse for a fresh start. Right now the flakes are falling peacefully outside our windows and the ground is blanketed in pure white - everything is clear, raw, fresh and new. And that's how I want to enter 2010. Nothing like a bout with cancer to realize the precious, delicate nature of life and to really get to know and appreciate yourself. I am so eager to do a million different things that it's overwhelming at times. I know now more than ever that you only get one shot at life and one shot at making a difference and a postive mark in this world. I refuse to be ever be content with simply existing. Yes, I am grateful to be alive, but for me that's not enough.
There is absolutely nothing that I can do to reverse what the chemo has done to my body. But what I can do is not let it take me down, to not use it as an excuse, but rather as an added motivator to make the most out of every moment of this life. I'm going to keep on living despite the effects. I'm going to defy the odds and start a family. I'm going to be physically and mentally stronger than ever and I'm not going to be afraid. Every day I know I'll always have those questions in the back of my mind: Is this just a headache? Does this cough mean my chest is again swollen with cancerous lymph nodes? But rather than letting it control me, I need to accept it, awknowledge it and learn to deal with it. My life as of late isn't all Care Bears and rainbows, but it is sure as hell is better than the alternative.
Thursday, December 31, 2009
Sunday, December 20, 2009
I've been feeling pretty good. And the better I feel, I realize how badly I felt for a long time. It's amazing how your mind and body can just compensate and make the most of the situation no matter how much you're hurting. I guess that's how I got to be at such an advanced stage of cancer ... .
It definitely feels good to feel good. However, I certainly wouldn't say I'm 100%. I still get pretty tired at the end of every day and don't have my full pep back. Turns out it could take up to a year for that to happen. Other than that, I just get some occasional chest pain and a lot of chest tightness.
Nonetheless, everything still works. We went on a very, long hike today and once my heart rate leveled off I was fine and very proud of myself. I've had to do a full eyebrow shaping and am back to shaving my legs and underarms (the one negative in all of this)! My hair is now fully covering my head. So much so that tomorrow I'm going into work without the customary head scarf I've been wearing for so many months. You can still see my scalp a bit as it is very thin, but there are no more obvious bald patches. I can't believe how fast it has all grown back. It really seemed like one day eyebrows and hair just reappeared. It's not red and it's not curly like Shirley Temple as many warned it would be. But it is very dark and I love it. I suppose that this is in fact my natural color. I guess I didn't really expect it to grow back with vanilla blonde highlights.
I've been working a normal schedule and keeping up with the busy schedule of holiday parties, shopping, snow shoveling, Christmas tree trimming and everything else that comes with this season. It's very hard to even remember when I couldn't do these simple things.
But it all came rushing back when I had a follow-up appointment at the cancer center this week. I suppose this is what's going to happen for the rest of my life while I'm constantly watched for any signs of cancer coming back. Hopefully it will get a little easier as time goes on.
As soon as I walked into the waiting room it brought my right back to my treatment days. Vulnerable. scared. uneasy. lots of anxiety. But I was able to recognize the fact that this time I was there as one of the post-chemo survivors I had always seen bopping in for quick check-ups, hugging and catching up with the nurses. And that's exactly what I did. It was great to see the team even though doing so meant I had to get my finger pricked and my port stuck.
It was most surreal to see my oncologist. I got all welled up sitting there in his room waiting. I could literally feel all the emotions swirling back throughout me. I thought I was going to lose it and just start crying as I remembered my own journey and watched so many others pass by the door at various stages of their own. But I held it together and just felt so incredibly grateful to be there painless and with a clear head.
Dr. Dailey sat down right next to me in his little exam room in the Hartford center and he asked about my post-chemo progress. He felt my lymph nodes on my neck and collar bone, under my arms. All signs point to the all-clear. But even so, he still wants to do one more PET-CT Scan before removing my port. Sigh. January 15 is the big day. If the scan is completely clear then we schedule a port removal surgery and I'll then be followed with a CT-Scan every six months. We talked about planning a pregnancy around my scans (very romantic) as I can't be exposed to radiation while pregnant. He advises that we wait until at least next January to start thinking of trying to build a family to be sure that my body is strong enough and all the toxins are out of my system. It all sounds like a great plan.
Then it was in to see the nurse to have my port flushed. Since it's not being used, I need to come in every month to get some saline and special concoction pumped through it to ensure there are no chances of clotting or build up of fibrous tissue within or around it. So it was another deep breath and needle jab ... hopefully I'll only have to go through that one more time.
After that appointment it's been back to holiday happenings, and I'm very much looking forward to Christmas and Hannukah with the fam. So much to be grateful for this year ... the gifts of the season take on a whole new light. Like all the cards and commercials say, I really am looking forward to a happy and healthy 2010.
Wednesday, December 9, 2009
Wow. So from the beginning I've been saying that I wanted to host a huge-ass thank-you-for-helping-me-survive-cancer party and I can't believe that it happened. And that it exceeded all of my expectations.
We hosted the aforementioned huge-ass thank-you-for-helping-me-survive-cancer party last Saturday and it felt so good to be celebrating something. It also felt so good to see in person all of the faces behind the cards, casseroles, flowers, and messages. It was a little overwhelming (in a good way) to see them all at once. I've certainly gotten used to being overwhelmed, but this was the complete opposite end of the overwhelmed spectrum.
Even though it was the first snow of the year, we had more than 100 people turn out to celebrate with us. From co-workers and former co-workers to high school friends, college friends and middle school friends to my parents, brother/sister-in-law and baby nephew, and T'Ville neighbors, they came out in full force and Craig and I couldn't have been happier to fill them with delicious bar bites, good music and fantastic drink specials. They came from Delaware, Jersey, upstate New York, New York City, Massachusetts, Washington D.C., and all points of Connecticut.
The tavern we hosted it at was amazing. They even worked with us to create drink specials based on my chemo cocktail of ABVD. But for this night, instead of Adriamycin, Bleomycin, Vinblastine and Decarbazine, it was $5 Alabama Slammers (A); $2 Bud and Bud Lights (B); $1 off vodka drinks (V); and "Doctor's Orders - take 2 and call me in the morning" - 2-for-1 house wines (D). Much more palatable and makes for a much better party. Everyone there for the party even got a signature ABVD hand stamp for the night. Who knew chemo drug names would make you part of the "in crowd?"
The music was perfect. One guy and his guitar crooning covers of all my favorite artists. We even filled the dance floor late night singing our hearts out to Counting Crows, David Gray, Verve Pipe and Neil Diamond. Then the juke box came alive and the party was really pumping.
I bounced from group to group all night thanking each person profusely and taking in their congratulations and compliments while doing my best to swallow the lump in my throat. All I kept thinking was that each of these people took the time out of their own busy lives to think of us on this night and on so many occasions throughout this roller coaster of an ordeal. Not one day went by that I didn't feel this tremendous force of support around me and I know without a doubt that that's what kept me from falling on my face even when I was down on my knees.
From literally 15 minutes after I sent the e-mail announcing my diagnosis in May, a flower shop truck rolled up the driveway with a huge, gorgeous bouquet from my former co-workers that I immediately blubbered into. I knew right then that I would never be alone.
Yes, I'm young and I had to deal with cancer and its harsh treatments. Yes, it's an awful thing to go through. But because of it, I have been given the clarity to see what an amazing life I have filled with a wealth of amazing people. And the best part? I have my entire lifetime to pay that forward.
Posted by Karin Diamond at Wednesday, December 09, 2009