The Long and Winding Road

Hi Everybody,

it's been a long time since any of us have posted, and I'd like to apologize for that. We have tried our best throughout this experience to keep our friends and family in the loop, but over the last couple of months the exhaustion has overcome our intentions. A lot has happened, and I'll do my best to get you all caught up.

At the time of the last post we were facing the final three chemo treatments. The side effects of the treatment had gotten progressively worse, so even a small number like three seemed absolutely daunting. In the past I've discussed, sometimes exhaustively, the mindset of our cancer situation. Well, here I go again. As we move from treatment to treatment, from waiting room to waiting room, we don't feel that we're getting closer to the end, just farther from the beginning. Time has taken on new properties for us. Not frozen, but definitely slowed. After the rush of the first few months, with constant appointments and phone calls, with highs and lows that were previously unimaginable, things start to plateau. Forward motion retreats from our consciousness, and cancer just becomes a way of life. There have been different people in and out living with us, that have made our survival possible. Their arrivals and departures are like the place markers in my memory of the chemo chapter of our lives, and I am eternally grateful to all of them for this gift.

After months in the groove, treatment ten pushed us over the edge. Each treatment seemed to have its own style, in that Sarah's reaction was always different. Some were gentle, and others were not, but the tenth hit her like a freight train. I had never seen her that sick, and I hope I never have to again. She was in bed for days, yet unable to sleep. There was pain from inside her bones coupled with unbearable nausea. This was the first time that she expressed to me, "I don't know if I can do this anymore". It was a horrible couple of days, and the reprieve stayed in the distance for far too long. There was nothing I could do but be there with her, and it was the absolute low point of the last six months.

The pain retreated to it's normal level of uncomfortableness and the nausea eventually passed, but something new had surfaced in its stead. At our next appointment with the oncologist, Sarah informed him that she was having trouble taking a deep breath. The problem wasn't that it was painful, or even that she was short of breath, but that at a certain point the breath just stopped. This was scary for a couple of reasons. The first is that Sarah is young and breathing is, well, kind of important. We take about 1440 breaths per day, so it's not really something you want to mess around with. Secondly, one of the drugs in Sarah's chemo regimen is known to cause lung damage. The drug bleomycin causes scarring in the lungs, which is generally unnoticeable to average person. Athletes being treated for cancer are not given this drug, because the damage could be career ending, but for those of us who are not running marathons, it's not supposed to matter. Apparently this is not always the case.

Dr. Wu's reaction alerted us to the seriousness of the situation. The chemo session set for later that afternoon was canceled pending a CAT scan and a breathing test. It had been a while since we'd ventured into the unknown, but here we were, back to waiting rooms and imminent yet undefined phone calls looming overhead. Though the possibility of permanent lung damage was a horrifying thought, the potential of a pardon from the last two chemo treatments filled us with hope. (I was going to call it a breath of fresh air, but that's a little much, even for me) I'll be honest with all of you reading this, chemo was hell. It reached deep within us all, and it squeezed the life out. It's like being under water, where everything moves more slowly, all the of the sounds from above lose their clarity, and ultimately you feel out of place and like you're running out of time. The idea of surfacing, even if just for the duration of a postponement, was heaven.

The tests were quick and fairly painless, and our answers came quickly. On a Friday Dr. Wu left us a message which in short told us that chemo was off for now, and we'll talk more at our appointment on Monday. That was a long weekend, filled with speculation. We had seen the results of the scans and now knew that there was decreased lung capacity, but no permanent damage caused by the Bleomycin. This news was great, but we weren't quite sure where it left us. Was chemo over for good or just postponed further? In our minds chemo was over. It finished with a an earth-shattering bang, painful and tear ridden.

On Monday we found that Dr. Wu saw the situation in a similar light. If the cancer comes back, it can be treated again, but the lung damage would be irreparable. Sarah is only 30, young and looking forward to a healthy and active life. It's hard to achieve either of those goals without your lungs. Suddenly, and rather unceremoniously, we were done with chemo.

This was followed by three weeks of recovery time. No needles and no doctors, it was the closest to normal we've been in a long time. I would have liked to have posted all of this earlier, but that last six months have been so draining for us, and for everyone around us, I couldn't bring myself to type a word.

After a long period of guessing what radiation was going to be like, we finally had our consult. The doctor was very nice, straightforward and honest. She laid out all of the facts, the most daunting of which were the side effects. We had long been under the impression, as are most people, that chemo was the build and radiation was the release, but this is not the case. The side effects can be severe: burning of the inside of the esophagus, inflammation of the heart, burning of the skin, and so on. The radiation is every bit as destructive as the chemo, but it is very localized. We're dealing with lasers now instead of I.V.s, and it's still very intense. Sarah is slated for three-and-a-half weeks of treatment, going five days a week.

We have been getting congratulated by our friends and family for finishing treatment, but it's far from over. Radiation does not run in waves like chemo did, instead it has a cumulative effect. Sarah's side effects will peak two weeks after her treatment ends. The seriousness of this leg of the treatment is disappointing, but as melancholy as this sounds, we're used to it. We have started to look ahead to recovery and are trying to figure out what that means for us. Our oncologist told Sarah that she is looking at a full year of recovery time, and admitted that this is where our health care system really fails. Once treatment is over there is no direction or assistance in rebuilding your body, and your life in general. You're just sort of left holding the bill. Luckily we have numerous friends and family members that work in the healing arts, who I'm sure we'll be calling on for advice. I generally like to end my posts with a positive, which gets harder and harder as the experience grows deeper. One thing that we really look forward to is using this experience as motivation to live as healthy of lives as we possibly can.

Now that I'm back on the Blog, I'll do my best to keep you up to date. Until then...

thanks for all of the love and support,

Dan