Wednesday, July 18, 2007

The latest news…

Alec is beginning to calm a bit from the upheaval at home. There haven’t been quite as many tears or tantrums…as things begin to settle back into some sense of normalcy. David hasn’t been sleeping as much and Alec is enjoying his sorely missed dad-time. He still gets upset that Dave can’t lift him, but enjoys crawling all over him on the floor. Alec still tends to loose it when Dave goes out or leaves the room…but that will pass in time…as it did last year.

We went in to see the surgeon last week. I love that guy. Not only is he good…but he has a great sense of humor. He has a very human and down to earth nature, which is hard to come by sometimes with surgeons…especially the good ones. But he talked about the surgery and how it had gone extremely well and showed us the post-operative MRI of David’s brain. It looks like he removed somewhere between a plum and orange sized portion of David’s right temporal lobe. Crazy, huh? David thanked the surgeon for his periodic calls to me during the surgery and told him how much of a difference it made at putting my mind at ease during the hours David was under. The surgeon said that he’s been on the other side, waiting for news while someone he loved was under and that it’s not fun and he now always tries to keep people informed throughout the process.

The surgeon has increased David’s weight restrictions to 10-15 lbs. So, it’s more than a gallon of milk, but still a heck of a lot less than Alec. He still can’t drive, but he’s allowed to begin working 20 hours a week remotely…which will be good both financially and for Dave’s state of mind. He’s getting a bit stir crazy. Last week, every day I came home from work…it looked like a tornado had whipped through the house…leaving chaos in its wake. David would begin projects, realize he couldn’t move or lift something and drop that one and start on another. By Friday, he had taken down our computer network twice, disassembled the TV so it no longer worked and a couple other things I can’t remember at the moment. At least he’s keeping busy, right?

We met with David’s new Neuro-Oncologist on Thursday. It went well and I think he will be just as good as or better than our previous doctor. He has a kind heart and also believes there is always hope and a reason to keep fighting. There was a bit of a frightening moment when the doctor told us there was a problem with Dave’s blood work and that, as of that moment, he was ineligible for the new trial he was supposed to be starting. His lipitoids, which is the white blood cells that fight bacterial and viral infections, were too low. His were 450 and they had to be 500 to begin the trial. Mind you, if his dropped which can very well happen while on chemo…he still could continue the trial. They just can’t be below 500 to begin the trial. We both were a little disconcerted by this news…Seeing as we’ve been told as of right now…until something new comes up the pipe…this is David’s best chance for survival. Good times. They drew more blood and we began the waiting game once again. Unfortunately, there is nothing we can do to increase his numbers…but wait. The doctor said we had a 1 ½ week window before we would be forced to begin a different trial. They don’t want David to be off treatments for too long, otherwise we loose the advantage we got by removing that large portion and a greater chance for more cancer cell growth. But thankfully, we didn’t have to wait long and his numbers skyrocketed in true Dave form up to 847 within days. So, David has been approved for the trial and began it Monday.

This is a phase 2 trial, meaning it’s on the 2nd round of testing and has shown promise among the phase 1 applicants for reduced or complete lack of tumor growth. Since this is such a nasty tumor and it has all of those damn invisible tendrils…it’s impossible to completely remove it all. Which is why David has to be on chemo to try and destroy the remaining cancer cells. This new trial is a chemo drug, Dasatinib, that has been previously used to treat Leukemia. He will be taking it every day, twice a day. Once in the morning and once at night. There will be no days off…but it a smaller dose than he was taking previously.

At first, I was worried about David being on Chemo every day of the month. But I realized the other day, as we sat there in the waiting room, seeing other tumor patients walk past (You could tell by the tell tale scar on their heads) that Dave was doing great. Many people in our same situation are having not only motor function issues but also cognitive problems. Some still have actual portions of the tumor in their heads, being inoperable for different reasons. Many are somewhat, if not completely, debilitated by the Chemo treatments…looking so fragile and sad. But then there’s David. Cruising at mach speed and looking as healthy as can be. And then I realize, that no matter how crappy things are getting, we are lucky. Very lucky. It could be much worse. People talk about how hard it is to get through Chemo…and how those were the worse 6 months of their lives. And yet, here’s David. 1-Year of Chemo completed and a 2nd started…and the plan to continue on it indefinitely until something else presents itself. And he’s moving forward. Living his life. Inspiring us all. Chemo is tough, even on the strongest of people…but we’re finding that having love, hope and strength can pull one through almost anything. Somehow we’ll get through this. Some days it doesn’t feel like it. Some days the Cancer seems to beat us down…looming around us like this oppressive presence. And some days we cry. But today we live and move forward. Today is a new day…

“So stop waiting until you finish school,
until you go back to school,
until you lose ten pounds,
until you gain ten pounds,
until you have kids,
until your kids leave the house,
until you start work,
until you retire,
until you get married,
until you get divorced,
until Friday night,
until Sunday morning,
until you get a new car or home,
until your car or home is paid off,
until spring, until summer, until fall, until winter,
until you die,
until you are born again
to decide that there is no better time than right now to be happy...”
~ Author Unknown

Saturday, July 07, 2007

Here's the scoop...

Dave went in for surgery on Monday June 25th, exactly one year from his first surgery. Different hospital and completely different experience. We got there at 5am and then were in his pre-surgery prep area by 6am. A tech came in and started shaving patches on Dave’s head to attach these wacky little electrodes to his head, so that they could do a special “Stealth” MRI that would map his brain. We were then informed that his surgery wasn’t until 2:30pm, not the original 7:30am time we had thought. Dave was less than thrilled. He was already starving and the thought that he was going to have to wait another 8 hours for surgery made him downright crabby. So, I called everyone and told them not to come to the waiting area, because we would be sequestered in this little cube until he went in for surgery. Of course, the moment I was done calling everyone, the nurse came in to say the surgeon had arrived and wanted to reschedule all his patients because he wanted to get Dave in first. We were relieved and happy. I think it’s always best to have surgeries done early in the morning, when the surgeons are still fresh and focused. I’m not sure why the surgeon wanted to do David first, maybe because it was an extremely complex surgery. Who knows. But we were delighted.

David was wheeled out 10 minutes later as I was madly calling everyone to tell them to get back out of bed and that the surgery was back on for the morning. Too crazy. The waiting area was quiet as I was the first to arrive, and I got a “cube” assigned to myself and friends and family since it was turning out to be quite a sizeable group that planned come. We had 5 chairs, a table, a lamp and a telephone. A s everyone started showing up, we ended up pulling another 3 chairs in accommodate our group. It was great having everyone there. It made the time past swiftly, and as they all regaled me with entertaining stories…I was mercifully kept distracted. We actually got 2 calls throughout the surgery. The first time the phone rang, everyone just stopped and just stared. I figured it couldn’t be good…but it ended up being our surgeon’s nurse telling us that they were “in” and it was all going well. Yet, another reason why I love this surgeon. Not only is he really good…but he understands people and how terrifying the whole waiting can be…and I guess this is standard procedure for him to have a nurse call periodically throughout a procedure to keep the family informed as to how it was going. The second call came about and hour or hour and a half later to say that they were done and closing up. Wow. His surgery was an hour and a half shorter than expected, which was a very good sign. The surgeon came down to say it had gone extremely well and that he had removed a large portion. I have yet to find out how much a large portion is, but I hope to ask him next Tuesday when we see him again. He said to go out and get out of the hospital for a while, because David wouldn’t be awake for at least 2 to 3 hours. So, a bunch of us left and went to Cheesecake Factory. Everyone I think was remembering how much weight I lost last time, since I basically stopped eating for a week…and everyone was on the food train making sure I was taking care of myself. So we went there and had a nice lunch and then when we returned, there was a note from David! Knowing David, this shouldn’t have surprised me. He was out of anesthesia and awake 20 minutes after the surgery. He told the recovery nurse to leave this message, “Love you Moonbeam.” It was 3 of the most beautiful words I have ever heard. He was awake and doing well.

He was eventually moved to NICU where he spent an uneventful night sleeping. He ended up taking more pain meds than the first time, but this wasn’t surprising since they actually removed a portion of his brain. By mid-morning the next day he was moved to a wing with other head trauma patients for recovery. So, all of his nurses were specialists as well in dealing with head and spinal trauma. They were amazing and kept diligent watch over David. They were surprised by his continued speedy recovery and we were walking the halls in no time. That night he ended up spiking a very high fever and there was a very real concern that there was something serious going on there…but then 4 hours later it was gone. Poof. On day 3 the surgeon came in to tell him that although he had planned on releasing him on Friday or Saturday, there was no reason to keep him in any longer and he could go now. This was Wednesday. Later that morning, as we waited for all of his discharge paperwork to go through, his Neuro-Oncologist came in to discuss the biopsy. That could have gone better. It could have gone much worse…but it definitely could have gone better. They found traces of inflamed tissue from the radiation last summer, some necrosis from dead cancer cells and they also found GBM tumor cells as well. It was a major blow to us. Unfortunately, it wasn’t too surprising given the kind of tumor David has…but it hit us hard. It was an extremely good thing we went in for the surgery and they removed a sizeable chunk, so many of those cells were scooped out as well. They also removed a larger chunk to remove as many as possible of those invisible tendrils this kind of tumor sends out through the brain, so we can begin a different protocol and beat this thing. Dave is now off the Chemo trial he was on, since Chemo wasn’t doing to trick completely. And we are planning on getting on a new trial shortly. This trial is quite exciting and there are many GBM patients who really want to be on it, but can’t since it is extremely difficult to get into. To be eligible, one has to have had a surgery recently as well as have already gone through chemo and radiation previously. So, one has to be in at least a 2nd or 3rd surgery, but can’t have done any other treatments beyond the standard. We’re very excited and lucky to be part of it. I’ll let you know more about it once I get all the “official” legal documents on the trial.

So, here’s where we’re at. We’re not quite as emotionally debilitated, as we were last summer at this time. But we’ve had some dark moments. Sometimes we wish we could live the life we once had…a life without cancer, fears and heartache. But unfortunately we don’t get that vote. So, we’ll keep moving forward. Keep fighting…keep living, laughing and loving. There are tears…but there are also smiles. There is a long battle ahead of us and we’re two more warriors who have entered the fight. And we’ll keep fighting…because someday they are going to have a cure for this little fucker. And when they do, David will be here and he’ll get the treatments he needs and we will come out of the other side of this mess…

Continue to dream…

~The Warriors