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.
Sunday, December 20, 2009
Selective Memory
Wednesday, December 9, 2009
Celebrate We Did 'Cause Life is Short but Sweet for Certain
Sunday, November 29, 2009
Transition
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
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?
Thursday, November 5, 2009
Why I Am Fortunate
Sunday, November 1, 2009
Recovery - for the 12th Time
Sunday, October 25, 2009
Chemo Day 12
Tuesday, October 20, 2009
Last-Chemo-Day Eve
Saturday, October 17, 2009
You Can't Always Get What You Want
Thursday, October 15, 2009
The Urge to Run
She ran with my photo on her back the whole way and I couldn't have been more proud of her. It's been very, very difficult for me to not be able to run like I used to during all of this. I'm far too weak, but to be carried by Nicole I felt like I was a part of something much larger than myself. She raced in honor of me and several others that she has encountered with her work with LLS and told me that anytime she was tired or sore she would think of what we were going through and keep on going. When I get better and try to follow in her footsteps I'll be thinking of what she's accomplished (a marathon last year only to come back after an injury to do a half-marathon this year - both times for LLS) to get through my rough spots.
Take It Day by Day
I was feeling really great on Monday and Tuesday. This was unusual as traditionally those are my bad days after chemo (days 4 and 5 - Sun and Mon). This was also after the toughest round yet - this chemo round hit me hard and fast. I was a waste over last weekend, was very frustrated, even a bit angry, very achey, and spent a lot of time on the couch at my parents house and my own.
But I bounced back after the weekend and went to work in the office full days Monday and Tuesday. I was feeling so good Tuesday evening that I even had a delicious Long Trail Harvest beer with dinner. Then at about 8pm my throat started to swell and it was all downhill from there.
I woke up throughout the night Tuesday with bad sore and raw feelings in my throat and difficulty swallowing past my swollen glands. This is what I mean about living hour-to-hour. I wasn't too surprised as Craig had come down with a cold/sore throat virus a few days earlier but I thought I had somehow gotten away without catching it. No such luck.
When you get a cold and you have cancer it's quite a bit more alarming. Normally, I wouldn't even go to the doctor and just ride it out. But now I know that my immune system is very compromised and that the chemo kills the good cells that fight infections. So, you get pretty concerned over what to others is a little bug, but for me could be a killer. Right to the oncologist it was.
He said that because of my situation he would treat it like a virus and give me antibiotics which I was happy about. I was told to rest and drink lots of fluids which I'm trying to do. I need to get myself strong for my next - and final!!!!! - treatment. Not to mention the UConn Football homecoming Saturday and Patriots Game at Foxboro Sunday!
Must. Get. Better.
Tuesday, October 13, 2009
A New Line on the Resume
Sometimes it's hard to let myself transition between those two worlds. At times I have to make a very conscious effort to pull myself together. Now that my treatment is almost over I get very sad seing other patients. I saw a woman yesterday in the cancer center who was my age with four young daughters and her husband there with her. The family was so adorable and her kids were running into the bloodwork room hugging the nurses and giving them pictures they had drawn. It nearly broke my heart to think of this woman going through all that I have while trying to stay strong for her little girls. I tried to stay focused on the story drafts I had brought with me to review while I waited for my shot but it was nearly impossible to hold back the tears. Even just being there for a quick shot you feel vulnerable and helpless. The Neupogen shots burn like crazy and leave me achey and sore but with a deep breath and a Band-Aid I get through it. I tucked the printout of my blood count paperwork under my meeting folder and headed back to my office - several squirts of Purell along the way. I've learned to swallow the lump in my throat, take my patient hat off, put my employee hat back on and get back in the groove. And I am so grateful that I have that opportunity. If my "patient hat" was the only one I was wearing during this whole experience I never would have made it.
I really never considered not working during my cancer treatment. From the moment I was diagnosed I knew that if I could physically do it, I would keep my life as "normal" as possible. Over these past five months I've learned that normal doesn't exist and I'm happy about that. Normal is boring. Instead, let's say that I've been able to keep my life as "uninterrupted" as possible and being able to continue with my career has certainly helped that.
I'm lucky enough that the type of work that I do -- writing, editing, design, websites -- can be done remotely and with the digital world that we live in I can feel like I'm still part of the team sending e-mails back and forth just as I would if I were actually in my office. And I'm lucky enough to have a boss and a team that are more supportive than I ever could have imagined.
Now that I'm in the home stretch I've been at the office more - being a little more daring with my immune system, less worried knowing that the cancer is gone. I'm realizing that I need to ease into things and go easy on myself. I do a lot of internal kicking of myself after I feel like I say dumb things or miss office jokes. It's hard to be patient with my brain which processes still a little slower than it used to. Multitasking requires more work. I'm looking forward to the chemo brain effects fading. However, having chemo brain has actually taught me to be more effective. I am more focused than I ever was because I am more conscious of being focused. I am more organized than I ever was because I'm overly paranoid about losing or forgetting something. I am more diligent in rereading, editing, giving a very careful eye as I have lost that (what could be hasty) confidence in my skills. I keep detailed "To Do" lists and file all my notes, which I continually go back and review. My writing flows much easier than it ever has - maybe becuase it's abit more liquid up there in my head. I also have a much better perspective. I'll never again allow myself to get stressed over finding the right words for a headline or because I can't get a webpage to render correctly - I now know what's really worth stressing over. Call me crazy, but I think cancer has been a good thing for my career.
The one part that is tough is being the hairless kid at the meeting table. I don't even think about it within my deparment, but it does set in when I meet new people I may be working on projects with. I have a feeling that the scarves I wear are a pretty obvious indicator that I've been going through cancer treatment, but I always wonder what people are thinking. Do they treat me differently because of that? Do they doubt my capabilities? Do they think that I had some fluke accident where I singed off all of my hair? Do they look at me with pity and think that I'm on my way to the grave? It's times like that where I question whether I should have gotten a wig, but I know for me that I would have felt more uncomfortable with that - always worried that it was crooked or didn't fit right. I feel awkward even wearing lipstick. I've always been the au natural/mascara-and-lip-gloss only type so I suppose it's appropriate that the same would go for my choice of headwear. The tough part is that my hair isn't instantly going to grow back when I'm cured. There are many weeks of scarf wearing to go ... .
Despite all of these insecurities, what I've found is that people don't even react. During all of this I have never felt that I've been treated differently because I have cancer, that I've missed any opportunities because I have cancer, that people shied away from me or gave me breaks because I have cancer. Maybe it's because I work in the most empathatic setting you could pick, amid doctors and nurses who fully understand the realities of disease. Whatever it may be I know that I am extremly lucky to have been able to feel accomplished and keep learning and growing in my career throughout this fantastical world that is "cancer."
Cancer does not mean that you have to end your life as you know it. Sure, you'll have to make some major adjustments, but it does not mean that you have to curl up in a ball and await your fate. It's amazing to have witnessed first hand the strength that we all hold within ourselves and this is what allowed me to keep doing the things that make me happy despite my disease. That's not to say that there aren't days when you can do nothing but lie in bed because, believe me, there certainly are and being in a ball is the best thing you can do for yourself. Any time I was feeling really low my Dad would tell me to "dig deep." I've dug deeper than I ever knew I could and discovered things about myself I likely never would have without facing cancer.
A fellow Hodgkin's patient shared with me something that someone told him: "cancer is a thinking man's disease." You have an awful lot of time to think about life, about death, about your place in the world. The key to making it out of it alive is to be able to keep those thoughts in check and balance the big thoughts with the simple ones - like how much I love ice cream. For me, keeping my mind stimulated (and distracted when the heavy realities become too much ) has been just as important in my recovery as the chemo meds.
Wednesday, October 7, 2009
Chemo Day 11
I always blog about my treatment day experiences several days after and realize that much is probably lost in the interim. So, because for some reason I have not been able to sleep after this treatment, I will write. Forgive if this makes no sense whatsoever and is riddled with bad grammar and punctuation. I blame the drugs.