Sometimes Love Is Not Enough

[CindyA]

Sometimes Love Is Not Enough

January 31st, 2014 - by Bob Hertzel

In the summer of 2008, my wife Susanne, started to cough. At first we did not think too much about it, but as the year continued, the cough did not go away and she began to have trouble breathing. In an effort to figure out what was wrong, we sought the opinions of various doctors- endocrinologist, gastroenterologist, cardiologist and finally pulmonologist. She did not have a threatening thyroid problem, nor acid reflux disease, nor a cardiac condition. After many tests, X-rays, CT Scans, and finally a bronchoscopy, Susanne was diagnosed with Bronchiolo-Alveolar Carcinoma- BAC, a non-smoker’s very rare form of lung cancer. This type of cancer tends to stay in the alveoli of the lungs and does not tend to metastasize to other organs. As such it was deemed treatable, but not curable. But treatable to what extent?

Susanne was first given the normal, insurance approved drugs for treatment. She was then given Tarceva, which worked very well for about 6 months, and then two trial drugs over two years at Smilow Cancer Center at Yale, and Massachusetts General Hospital in Boston. As the trial drugs proved no longer effective over time, and Susanne began to run out of options, we began to explore the possibility of lung transplants, as a last ditch effort to make something work to save her life.

Most transplant centers will not consider performing transplants on patients with lung cancer because of the huge risk of the cancer spreading outside the affected lungs. It was at the University of Pittsburgh Medical Center (UPMC) that Susanne was listed after lengthy testing. UPMC is one of the leading lung transplant hospitals in the country. They will perform 100-130 transplants per year while other major transplant centers may do 20 such procedures, and they have been doing these procedures since the 1980’s.

Nine days after we arrived in Pittsburgh and Susanne was listed, she crashed and was place in ICU for two months, being kept alive by a ventilator. She could not talk. She could not eat. She was told that we had to keep her exercised all through this otherwise she would get deconditioned and she could be de-listed as a result. We learned in this process about all the work she had to do to get strong enough to survive the transplant operation. We learned about the precision of matching lungs from a donor, about the false alarms we had, and about the agonizing wait for a match. Finally on Christmas Eve day, 2011, she got her new lungs after a 12 hour procedure.

She then went through recovery, and was allowed to return home after six months in Pittsburgh. Once we got home she went through pulmonary rehab, lots of followups, and was doing great………until she was diagnosed with liver cancer in September of 2012. She again sought as much treatment as she could take.

Throughout this whole process, she never complained about the nausea, the throwing up, the extreme fatigue and the weakness. I got her to write down her thoughts, when she was able, during her two months on the ventilator. She just wanted to stay strong enough for the payoff of new lungs, and wanted to “live a kick *ss large life” after she received them. And she did as long as she could.

After Susanne finally lost her battle this past August, I finished writing a book chronicling the struggles of fighting a rare form of lung cancer, from diagnosis, to treatments, to lung transplant, to recovery, to recurrent cancer, all from a caregiver’s perspective. I originally started to write the book “Sometimes Love Is Not Enough” as a cleansing experience for myself and to chronicle events of her strength, grace and courage for our family and friends. I then realized that there may be some very relevant topics about the confusion of diagnosis, about patient advocacy and caregiving, about treatments and of course, the possible lung transplant option. After Susanne passed away, I realized that this was also a love story. We had been married for almost forty years. She was only 56 when she was first diagnosed. I was with her every step of the way. I gave her care, advocated for her and loved her very, very much, but sometimes, love is simply not enough.

This book is now available through the publisher, Xlibris, http://www.Xlibris.com. or through me at bob.hertzel09@gmail.com, at discount prices. Much of the proceeds will go to LUNGevity for research projects, and some will also go directly to lung transplant research at UPMC. I hope many who read this will get at least one nugget to use as they confront their own lung issues.

http://blog.lungevity.org/2014/01/31/so ... ot-enough/