Thursday, December 31, 2009
Aftermath
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.
Saturday, December 26, 2009
Sunday, December 20, 2009
Selective Memory
Tuesday, December 15, 2009
The Unbelievable World of Snowflakes
Though written centuries earlier Francis Bacon has a response:
Thursday, December 10, 2009
In the spirit of support.....
Long Version: Concert dance ain't cheap. Even when you're making money often times it's not enough. For 6 years, Backhausdance has managed to not only survive but succeed at this difficult art form. They've won awards, received rave reviews and managed to maintain a group of amazing dancers. They recently set their sights on expanding their performance schedule out of California and started looking toward the mecca of dance in the U.S.: New York City. Sure enough, almost right away they were invited by Joyce SoHo. to perform. This is an amazing opportunity for them. Not only were they invited to perform, but they are one of only seven companies from all of North America. That's an entire continent, people. It's really big.
So why are they on Kickstarter? They need to get 11 dancers, an Artistic Director, a Managing Director, an Executive Director, and a Lighting Designer all the way across the continent. Oh, and they might need to eat while they're there too. The funds they raise on Kickstarter will be used to purchase airline tickets, pay the salaries of their talented dancers and cover basic production costs. Like I said earlier, concert dance ain't cheap. But they're not just looking for a handout (if you want to just shower them in cash they won't say no,) instead they've put together what they think are some cool rewards for helping them out. And here's another bonus. Backhausdance is a non-profit 501(c)(3) organization so your support is tax-deductible. Once they all settle up, they'll send you a reciept that you can take to your accountant while you feel good about giving to charity.
Suffice it to say this is an amazing opportunity for them as they take their years of success on the West Coast and bring their work to the mecca of dance, New York City. Thank you for supporting Backhausdance.
About our show at Joyce Soho: Backhausdance will be performing an evening length program of repertory: Arrive, a commissioned piece based on a quote by poet-laureate Maya Angelou with music by Mogwai and Explosions in the Sky;Shift, an elegant four-part work with music by Zoe Keating; Sitting on January, the award-winning signature work by Backhausdance, set to music by Bela Fleck and danced effortlessly on wooden chairs; and a world premiere by Jennifer Backhaus.
Wednesday, December 9, 2009
Celebrate We Did 'Cause Life is Short but Sweet for Certain
Tuesday, December 8, 2009
Monday, December 7, 2009
Silver Maples
Sunday, November 29, 2009
Transition
Sunday, November 22, 2009
Saturday, November 21, 2009
Thursday, November 19, 2009
I Can Breathe Again
Now I can stop planning what I thought would be another six months (at least) of hell - or my own funeral arrangements - and get back to planning my future. Most immediately that means Thanksgiving - that holiday now has a whole new meaning beyond the chance to gorge on butternut squash. Then my favorite time of year - Christmas. And I can now confidently say that I'll never have to have a Christmas with cancer! I'll have a Christmas with a port in my chest and a very strange hairdo ... but no cancer! After the New Year I'll have another PET-CT Scan and as long as the results are again clear, I can finally schedule the port removal.
After that? Running a half-marathon, enrolling in grad school, mastering the tripod headstand, writing a novel, volunteering to help others going through this, mentoring, tackling a triathalon, traveling the globe, starring in community theater productions, learning the guitar, taking an African safari, promoting world peace ... you know, the little stuff. At least I can get back to dreaming about it all now without cancer clouding the way.
Tuesday, November 17, 2009
The Waiting Game
Monday, November 16, 2009
A Faery Tale Moment....
Saturday, November 14, 2009
In Flux: Cancer or No Cancer?
Getting a phone call from your oncologist on your office phone in the middle of the day is a little unsettling. Getting the call the day before you have a scheduled appointment with him to go over your PET-CT Scan results is a bit more worrisome. When you pick up and he tells you he'd like to meet with you to go over things ... and that you might want to bring along your husband or mom, that's really not a good sign.
I was expecting to receive the results of my first post-treatment PET-CT Scan on Friday, the 13th - "boldly" (in the words of my oncologist) scheduled on this superstitiously day of oddities. However, I got the news a day early after Dr. Dailey found some concerning results.
He called me at work. For a fleeting moment I thought (hoped) that maybe he wanted to alert me to something happening at the cancer center that I should include in the hospital newsletter. That faded quickly when he told me that he got my scan results back and had shared them with several colleagues in the cancer center, an expert pathologist, a noted thoracic surgeon at the hospital, etc. I know that you don't go around displaying perfectly clear scans across the hospital.
The long and short of it is that there is what is called a "hot spot" that appeared on my scan. It shows up in my anterior mediastinal tract (between my lungs) more toward my heart. "Hot spots" are how oncologists find if and where cancer is lurking in your body. I was "hot spotting" all over the place in my initial scan ... "like a Christmas tree" I believe the wording was. The good news is that this particular "hot spot" is only a centimeter large and it is the ONLY area of activity on the entire scan. The even better news is that the probability of showing a false positive on these types of scans is very high. The PET scan shows anywhere that there is high metabolic activity - something that cancer cells display, but also something that other tissue inflammation or swollen lymph nodes (without cancer activity) can display.
The area is too small to be able to perform a successful needle biopsy to pull out the tissue to test it in a minimally invasive way. The only way to know definitively if it is in fact rogue Hodgkin's cells that were able to withstand the 12 ABVD treatments would be to undergo a surgical biopsy. Because of the small size of the area in question and its close proximity to my heart and major vessels and the need to go through my chest cavity, the surgery carries quite a risk. My oncologist and the several other physicians across a wide variety of practices that he consulted agreed that surgery should be avoided until we have a clearer picture of the likelihood of this actually being the start of a Hodgkin's recurrence.
Naturally, this was not the news that I wanted to hear. Luckily, Craig was there with me. We met at the Avon office - there was no one else there but us and my doc - it was so intimate that he wasn't even wearing his typical white lab coat. It felt like meeting with an old friend who unfortunately was delivering what could be some very bad news. It was eerily dark and quiet except for the bright fluorescent lights of the room that we were in. It was late afternoon and Dr. Dailey took the time to meet with us, explain everything in detail, and answer, mostly Craig's, many questions as I just kind of sat there in shock. It took me back to my first day of chemo when everyone around me just sounded like the parents on the phone in Charlie Brown - "wah, wah wahhhh."
We are all hopeful that it is nothing. I am still fighting this upper respiratory cold/cough that makes me sound like someone on the other end of a 1-900 number. We're hoping that that might have something to do with the hot spot. That the infection could be causing the inflammation in my chest, causing it to light up with the diodes. However, I am so lucky that I have a doctor that takes things seriously and is looking at this scan thoughtfully and carefully. As much as he apologized for not being able to give the "all clear" and schedule a date for me to get this damn port removed that he knows I am anxious about, he told me that he just couldn't comfortably say: "Ah, it's nothing. We'll see you in a year."
So, the plan of attack is get me healthy - get this bug out of my system. I'm now on a new antibiotic, a 10-day course and am continuing with the prescription cough medicine. I'm trying to get lots of rest, maintain my healthy diet and keep up with the yoga and walking as much as I can. The hope is that by doing this, on the next scan, this little hot spot won't rear its ugly little head.
Monday I go in to get my port injected with a type of solution that will hopefully break up any kind of fibrous tissue that might be causing a blockage that is not allowing for my blood return as God forbid, I may be needing to use this thing a lot again. Then Tuesday I have a detailed CAT Scan which is going to take fine slice pictures of the area in question to try to get some better clues as to what it may be. Then, in 6-8 weeks I enter the narrow tunnel for another PET-CT Scan. If this reveals that the spot is still there (or even worse, has grown), then it's time to slice me open to get in there and biopsy a good chunk of the tissue. If it is cancerous, the next step is a high-dose chemotherapy regimen called "ICE" then onto an analogous stem cell transplant with a chemo cocktail of "BEAM" ... the science of all of that blew my mind and as Dr. Dailey assured us, to even think about it as this point is jumping the gun. Here's hoping for a false positive.
So now, my fate is awaiting the identity reveal of this one-centimeter hot spot. And, I won't know if I'm cancer-free anymore for another several weeks. What can I do but do everything to keep my mind off it, keep my body strong, and stay focused on the fact that it's got to be a fluke?