Lately, I feel like I have been looking a gift horse in the mouth.
I can't make sense of the origin of that phrase and I have no idea if I used it correctly or not. Brian loves to tease me regarding my incorrect use of my limited vocabulary or my mispronunciation of a word or my confusion of a commonly used cliche. So, if nothing else, it is good for a laugh.
Seriously, though, I feel as though lately, with as good as Brian is feeling (Does one feel good or does one feel well? For the purposes of this blog post, Brian is going to feel good, but if someone corrects me in the comments next time he may feel well.) we are not spending our time just enjoying it as we should be. You see, just three weeks ago, Brian was showing all the signs of someone succumbing to the progression of this disease - the memory issues, the balance, the speech, the vomiting - all are signs of the disease taking over the brain. Then, we quit chemo. A week later, Brian's memory was restored, his balance and speech improved and his vomiting subsided.
And for the last two and a half weeks, Brian has maintained a very promising quality of life. So much so, that it raises much question amongst myself and many others as to whether or not Brian could be showing signs of improvement in the areas of the tumor progression. Was it the chemo that helped that? Or was it getting off chemo that helped with his current condition? How could we tell for sure?
One way to tell would be to have another MRI performed. But then what? The doctors would never say that Brian is cancer free again. I know my God is capable of healing Brian, but my heart and my mind are colliding here. While Brian is showing signs of improvement in the memory and balance categories, in the last two weeks his right hand has lost a little more function and his speech is hit or miss. His speech is markedly worse than it was in October when we found out the cancer was growing again, but only marginally worse than it was in December. He has been having some issues with vomiting here and there. He vomits in the morning about two to four times a week. Also, his memory, while better than it was two weeks ago, is not up to the status it was a month ago.
So it continues to beg the question - if we did another test, THEN WHAT? Based on Brian's current condition, logic tells us that the tumor is still progressing some or he would have the function in his right hand and leg returned. He would be speaking clearly. He would have energy and endurance. He does not. So, if an MRI shows that the cancer did shrink some in the cerebellum and brain stem, etc causing some improvements in his memory as a result of the chemo, does it matter? Brian remembers almost NOTHING from the week and a half in early January when he started to take a sudden turn for the worse. He doesn't remember the good or bad moments - not the doctor's visit, not Spamalot, not the vomiting, not the falling, etc. If the chemo did shrink things, having Brian in the condition he was to get to the point where we are today is so not worth it. It was not quality time. I would even go so far as to call it terrible.
Does this make sense?
And why do I write this? Why am I unloading all of this and writing out these thoughts and the conversations Brian and I have had over and over the last three weeks?
A few weeks ago Brian was so bad that the doctors and I thought Brian had, at best, a few weeks remaining. We made a decision to get under hospice care and move forward from there. Our assumption was that Brian would continue to decline. That has not been the case, so it makes the decision to go under hospice care and cease treatments confusing for many. Many people assume hospice means that the very end is imminent. I am getting many questions from friends and family as to why we aren't considering more. It makes it very difficult to accept our decision and carry on right now. Brian and I have talked the issue into the ground. We have thought it through and prayed about it. What we are experiencing with Brian right now with respect to how good he feels, is a gift. It is a gift of time and life we didn't think we would have. Why is it that is not enough?
I spoke with the hospice nurse yesterday regarding Brian's condition and progress. I explained that it is confusing how he has improved so much. It is difficult to accept the decision and live out our days right now. She explained that Brian is young. He has this shunt which is probably helping. There is no formula for what to expect from here. But, Brian does show slight signs of worsening - the vomiting, the weakening of the hand, etc. They are slight and slow and that is good. Hospice has a sometime unfair black cloud that follows its name. We wouldn't be under hospice care if this was not what was best for Brian and our family.
Brian's doctor knew the last chemotherapy would probably not do much for Brian based on how his last two scans had looked. Yet, he took a risk and gave us hope for one more shot. It was not overly surprising to him that Brian's disease progressed anyway. It was devastating to him. He cried with me in his office as he wrote the order for hospice. He did not want Brian to be in this situation any more than we did. We have done all there is to do. He was there with us every step of the way - believing, hoping, laughing and crying.
So, being under hospice care doesn't mean we have all given up. It simply means we have moved on.
And I want to enjoy this time. I feel like I am not enjoying this time because of the pressure coming from myself, friends and family to consider Brian's condition and what to do from here. I feel like we haven't come to peace with our decision and I want to come to peace with the decision. I want to live what time we have remaining in peace. I CRAVE and BEG for PEACE!
Please pray for peace in this decision and this time. The boys included. It is confusing to be told Daddy is dying and to spend our time with him and then to see him improve. It is encouraging to see him at one of their soccer games, then it is scary to see him unexpectedly vomit in the morning. Gavin thinks he should go to the children's hospital where he went because they are good at making people better. He has told me there are other doctors that can still help. Why won't we try them? Why won't God heal Daddy? Doesn't He love us enough?
He does love us enough. He has given us this amazing quality of life and some time to enjoy it. Please pray we maximize it.