Hope - February 8, 2011

There is always Hope.

Sometimes, what we hope for and pray for is not what happens. That doesn't mean we should give up on Hope.

Pete had mentioned having some difficulty from time to time urinating the past couple of days. He mentioned this to Dr R yesterday and the doctor seemed to believe that the numbness and loss of motor function in his leg is related to the urination issue. Last evening Pete had even more difficulty and in fact could only produce a few drops each of the several times he tried. Sometime in the middle of the night, Pete attempted to get out of bed and go into the bathroom, but instead fell to the floor. Fortunately he called and I was able to help him back into bed. I had urged him to use the urinals as he had the done successfully the previous night, but for some reason he felt that he might be able to succeed if he was actually in the bathroom.

By about 3 AM he was in considerable discomfort because the last time he had relieved himself was around the time of his back MRI which was just a little after noon. I felt that he had reached a point where he needed to be catheterized to release the pressure on his bladder. Between the leg and his discomfort there was no way that I and Bruce could get him into the car, so the only alternative was to call for an ambulance.

They came very quickly, one police officer and two emergency technicians, and were able to guide him out of the house using his walker and then got him on a gurney and took him to the ER. I followed in my car. Once there a nurse immediately inserted the catheter and in minutes they had to stop the flow temporarily because his bladder was emptying too quickly and that could present another problem.

The ER doctor was a young woman who just didn't seem to understand much of what we were explaining to her about Pete's medical background. She did want to speak with Dr R and we provided her with his emergency and office numbers. Fortunately there was a shift change at 7 and she was replaced by a much more reasonable young doctor. He said that she had filled him in on Pete's situation and that he felt it would be in Pete's best interest if he were to go to NYU if Dr R felt any additional medical intervention was required.

A short time later he came back after speaking with Dr R and told us that Dr R had recommended that Pete be released and that he would call Pete at home in about an hour. They sent him home with a small urine collection bag for easy transport, but also provided a large bag for overnight use.

Dr R did call Pete and gave him the results of MRIs. The news was not at all good, and Dr R was very solemn as he explained to Pete the ramifications. The platelet counts went down again, so chemo is out. More mets have developed along his spine and those that were already there have increased in size. He did not feel that any additional radiation would be advisable, but told Pete that he could confer with a radiologist to get a second opinion. He did not feel surgery would be an option, but again, told Pete that he could likewise confer with a neurosurgeon on this. Either of these options may result in total paralysis and would extend his life perhaps 3-6 months. He explained to Pete that he might want to speak with his family and discuss getting hospice care. Dr R told Pete that he would be there to assist him, whichever path or paths he might choose.

We've known from the very beginning that Sarcoma, particularly MFH, is an aggressive type of cancer, highly chemo and radiation resistant, with a very bleak prognosis. To have that placed on your lap in plain sight, though is devastating. It's as if you've been punched in the stomach and everything around you starts spinning and turns black. It's a horrible feeling.

I reached for my cell and texted Pete's father that it was urgent that he call me immediately. A few minutes later he did, I told him that he needed to come over and minutes later he had joined me at Pete's bedside.

We all cried quietly. We all knew, though we never admitted it aloud, that it was inevitable that this journey would lead us to this place. Pete's father asked about looking into different treatments, finding another cancer treatment center, and so on, but Pete said that he is tired of cancer controlling his life as it has been for over a year and a half. He needs to take control of his life. He's tired of running to doctors and hospitals, and for the time that he has left he wants to stay close to home.

For a while we recognized our humanity and our mortality. But never did we acknowledge despair and complete loss of hope.

After Pete's father left, I slowly began to reach out to people. I placed calls to members of the Sarcoma Community, began to search Sarcoma message boards on the internet and sent emails to others whose lives have so deeply and dramatically been scarred by this disease.

I began another round of searching and gathering information about compassionate care drugs, drugs that have shown promise in stabilizing the tumors in clinical trial but have not proven enough to be accepted by the FDA for general distribution. While I was doing that, Pete was doing some searching on his own. When he spoke with Dr R a few hours later he was asking about his opinion of trying some TKI drugs that have shown some promise in at least slowing the spread of the disease. Dr R agreed readily, but with caveats, to prescribing some of the chemo agents Pete presented to him. No one can be certain of the future.

The social worker from NYU will be calling tomorrow to talk to us about arranging for hospice. Having gone through hospice care with my mother several years ago, I knew some of the medical equipment Pete would need, so Bruce and I went out and got a wheel chair, a commode and a bath transfer bench.

This evening Pete looked around his room at the wheelchair, walker and other items and asked how much money he owed me. I told him that we'd settle up the day he launched his boat. That day is a long way in the future.

We're still holding onto Hope. It never really left, though it dimmed briefly today.