I’m going on 12 years of surviving a terminal cancer diagnosis. I have to let that sink in sometimes. I consider myself very fortunate that the aggressive treatments I had worked and that I’m here today to not just be here, but truly have a good life. The fact that I have survived long after my 15 month prognosis is not lost on me and I am eternally grateful for each and every day.
But there are times when I slip into my negative nelly mode. The last couple of months have been a real challenge. When I actually sit and think about it, it is ridiculous that I’m even complaining about something so minor, but it is something that affects me every single day. I’ve been having bouts of laryngitis off and on for a couple of years now. I never really thought much of it other than thinking I had allergies, or acid reflux. It would come and go, so no big deal right? Back in May, I was in Houston for my bi-annual check up and Dr. Sugarbaker was concerned. It wasn’t until then that the possibility that it might be cancer entered my mind. He promptly set me up for a PET scan to check things out, and thankfully, everything came back normal, and my voice magically came back later that night. He wanted to be vigilant with a follow up in 4 months instead of 6, so I went back to Houston in September. I’m happy to say that my voice was fine, the scans were clear, and everything looked good!I had a really busy September with fundraisers, Mesothelioma Awareness Day, and my check up, so I had been doing a lot of travel, plus a bunch of stuff with disability, my stress level was through the roof, and true to form, I lost my voice again. But this time it didn’t come back after a week, or two, or even 3. I decided it was time to see an ENT (Ear Nose and Throat specialist). He diagnosed me with a paralyzed vocal cord. It was most likely due to the radiation I had done 11 years ago. I have other nerve issues due to the radiation therapy, my entire left arm and hand are numb, and my circulation is poor. Now, it was affecting my vocal cord. Not the news I wanted to hear, but glad it wasn’t something like a tumor. So of course, me being me, asked first if it was fixable, and if it was, when could I get it fixed? He told me yes, there is a procedure that can be done, but he wanted to wait another four weeks to see if it resolved itself.
I sat in my car after my appointment and Googled “vocal cord paralysis”. The procedure is pretty easy, but my voice will probably never be as strong as it was. I started to get angry. I mean I was genuinely pissed off. It is really easy to go down the angry spiral when it comes to cancer and all it destroys. First, it robbed me of my babies first year of life, my career, my health, my stamina, and now it’s robbing me of my voice. My voice that I depend on to talk to newly diagnosed patients. My voice that I use to speak at conferences, podcasts, interviews. My voice was gone, and now I couldn’t do any of that stuff that I LOVED and was passionate about. It’s not very inspiring to listen to someone whose voice is a breathy, monotone whisper. It’s hard to inspire people when they can’t hear you!
The hot tears of anger started to flow and I just let them. I wanted to be angry. I reveled in this. I tried to scream but of course nothing came out, then I just started to laugh at the irony. I took a deep breath, dried my tears and decided to just deal with it. I’m not the victim type. I don’t stay in the “woe is me” attitude for long before I start to get annoyed with myself and try to figure out what to do to fix things or make the best of a bad situation. I decided to wait it out like the doctor said, and hope it resolved itself. I also put it into perspective. It’s fixable. It’s just another experience in which to draw on to hopefully help others who find themselves in the same or similar situation. I try to turn it into something good.A couple of weeks into this, I had another health setback. I had a mild case of pneumonia, which with one lung can be life threatening, so I ended up spending the weekend in the hospital.
I tried to stay positive and not get upset, but health setbacks are part of life. As a cancer survivor, we are always waiting for it to come back, and every health emergency brings it to the forefront of our minds. The doctors here don’t quite know what to think of me since I am not like other patients. They tend to be overly thorough with their evaluation, and for that I am thankful. I went in because I was having a hard time breathing and could feel something rattling in my lung. I figured it was pneumonia, and with a paralyzed vocal cord, coughing is not the easiest thing to do. They thought I was having heart failure and therefore fluid was collecting in my lung. Trying to explain that my heart is just weird since surgery didn’t convince them, so many tests were done, all to conclude that yes, I had the early stages of pneumonia, and they treated me for that.
It’s been a little over a week since my hospital stay and am happy to say I am finally feeling mostly normal. I have to do daily nebulizer treatments to help clear my lung, take steroids and antibiotics, but all are working and doing the trick.
It is times like these that I really try to take stock of how lucky I really am. My health issues, although serious, are not cancer. I will recover and be back to my normal self. I’m grateful for a body that recovers and doctors that are careful. I’m thankful for an answer to why my voice is gone, even though it’s annoying, I know it’s temporary. It is hard to always stay positive especially when health issues arise. I’m here to say it is perfectly ok to have a moment or two and have a pity party. It’s ok to be upset about the situation and cry, yell, or scream if you can. Curse even if you want! It’s ok! You have to let those feelings out and give them their time, otherwise, if you push them aside and don’t recognize them, they will come back bigger and badder than you expected and sideline you. Like I say, it’s ok to visit negativeville, just don’t live there. Pick yourself up, dust yourself off, and know that this too shall pass. Health issues are an everyday part of life, and it is knowing what to give energy to. I will admit, I’ve been pretty down about this whole voice thing. I get mad because of all cancer has taken from me, then I flip the script and turn it around, and think of what it HASN’T taken. Quite simply, my life.
When I put it all in perspective, I’m quite thankful for all I DO have, even with a squeaky voice.
| Wife | Courageous Mother | Mesothelioma Survivor | Starbucks addict | Lungleavin Day | Blogger | Mesothelioma Research Funding Advocate | Malignant Pleural Mesothelioma |
Heather was diagnosed with malignant pleural mesothelioma in 2005 at the age of 36. She received her diagnosis just after the birth of her first child, Lily.
In February 2006, she underwent extensive thoracic surgery, known as extrapleural pneumonectomy, with adjuvant intra-operative heated chemotherapy under the care of thoracic surgeon Dr. David J. Sugarbaker at the Brigham and Women’s Hospital in Boston, Massachusetts. She was declared cancer-free later that year.
Recovery from this disease is clinically unique because malignant mesothelioma is a rare, aggressive cancer typically diagnosed in older patients that, even with treatment, has a 6 to 9 month median survival rate. Mesothelioma, commonly caused by exposure to asbestos, typically only manifests after a 25-30-year latency period following exposure.
Today Heather raises funds to benefit two nonprofits that are dedicated to mesothelioma research and asbestos education. The Mesothelioma Applied Research Foundation and The Asbestos Disease Awareness Organization.
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