When I was in grade school my report cards frequently came back to my parents with little comments like "talking in class is a problem", or "quite the social butterfly". And I remember my parents always telling the story of our family going camping and me wandering off to the nearby campsites "making friends" while they looked around trying to find where I'd gone. In fact, being in a family of six children, I'd say I grew up with A LOT of talking. I distinctly remember a lot of talking at the dinner table and loud board games and even louder pool parties. Seems there was always something to say and someone to say it.
Now, I crave my quiet time. My son woke up the other night, disturbed in his sleep by the incessant singing of a mockingbird right outside his window at 3 a.m. He was so exhausted and miserable that he sought refuge in our bed far from "the noise". For me, it was so much quieter than the noise of details and anxiety vying for attention in my head that I found it soothing and beautiful and it quickly had me back to sleep (in our cramped quarters no less).
I do find it interesting now, as the spouse of someone with cancer, as someone who spends a lot of time in the hospital, how quiet I have become. I realize how quiet I've become when I haven't blogged for awhile. It seems deafening, the quiet. I haven't totally figured it out yet - why I stay silent, sitting on the newest of information about Phil. My little book of notes is just sitting on my bedside table, waiting to be turned into a post. I am fully aware that I am the conduit, the gatekeeper of sorts for the friends and loved ones waiting to hear about Phil's latest turn of events. I am fully aware but remain silent. It's strange how at times, when he is in crisis, I can't blog fast enough - sometimes posting every day. At other times, a week or more will go by. Clearly there is some anxiety management underway.
For starters, I think staying quiet is both a way to stop the process from moving forward for a while (so to speak). To keep it on the page, closed up in my book of notes. It is a very primitive form of control. OK, I've heard the latest, taken that bite and chewed it up. Now I just close the book on it, literally and wait until the next appointment and THEN I'll open up the book again ~ as if nothing can happen as long as I don't open up that book, or speak about it. Very wishful, magical thinking. Well, on with the latest in reality then....
Phil's pleural effusion was tapped (drained) last week and 550cc was removed. That's half of a liter, as in half of a huge Coke bottle worth of fluid. A LOT! It was mostly old blood and WBCs and the overall results were Good but Confusing. When Phil was neutropenic (had no WBCs) something in his pleural space caused a lot of inflammation/irritation. He was also thrombocytopenic (low platelets) and couldn't clot off bleeding from the irritation hence the blood in his pleural space. When he was given Neulasta to stimulate WBCs he made a lot of them and they rushed to his pleural space too. They also gave him lots of IV antibiotics to cover the possibility of infection.
There were no signs of bacteria, fungus, Mucor, malignant cells, or lymphoma in his effusion and the cultures are not growing anything either. There is nothing that looks like an active infection. The confusing part is what caused the effusion in the first place. He could have had an infection that cleared with the IV antibiotics in the hospital and since there still isn't anything growing in the cultures, we may never know. So, he sits tight and waits to see how he recovers. There is no treatment prescribed and he waits on some longer term tests like TB, and fungal cultures. Fortunately, he is feeling better every day.
NOW THE BIG QUESTION? WHEN TO TREAT WITH MORE CHEMOTHERAPY?
Practically, Dr. Kossman would like to treat Phil in 3 weeks.
Philosophically, not knowing what is going on in his lungs, whether that is a resolving infectious process or what, he doesn't want to just bottom Phil out again right away. Plus, as he said to him last time, "I've almost killed you now three or four times". He wants to give Phil time to recover just enough to take him (and whatever residual lymphoma may be there) back down hard. For now, Kossman will wait until Phil returns from his father's memorial service in early June to start the next round, #5 of a probable 6-8.
And that brings me to the most interesting part of our discussion. Do you know why Phil gets more chemo, even though his bone marrow is "normal", his chest mass is "gone" and he is in "remission"? Here's how Dr. Kossman explained it.
CHEMOTHERAPY 101
Say you have a 1 cm mass, like a lymph node. That = 1 Billion cancer cells.
Take enough chemotherapy to kill all of the cancer cells but the size of a pencil dot or the period at the end of this sentence.
That would leave you with 1% of 1 billion cells which would = 10 MILLION CANCER CELLS left.
That is why cancer is a fucker if you don't mind my saying so. Not going to stay silent on that one.
Showing posts with label blog. Show all posts
Showing posts with label blog. Show all posts
Wednesday, May 4, 2011
Wednesday, March 16, 2011
In his heart a man plans his course, but the LORD determines his steps ~ Proverbs 16:9
I've been getting a lot of kuddos lately and folks are often mentioning that my blog is great, yadda yadda and that reading it makes them feel like I am talking right to them. I'm often encouraged to write a book. Just this weekend I saw my elderly aunt Phyllis who said I was "quite a writer" which came as quite a surprise. 1) I had no idea she was reading my blog and 2) it is sprinkled with profanity. Not knowing what "quite a writer" meant coming from my 90 year old Lutheran organist aunt, I held her compliment in my mind alongside other nebulous descriptors like "interesting", "unique" and "amazing". However, when she left the party that evening she whispered in my ear to keep writing and said she liked my "strong words". It seems that no matter their age or station, people appreciate the honesty with which I describe my situation. From your comments I know that many of you enjoy experiencing the cancer journey vicariously from my insider's perspective. While it may sound that I'm suggesting you enjoy rubbernecking on my experience, that's not exactly what I mean.
I believe there is a fundamental fascination we have as human beings when there is an accident or tragedy unfolding in front of us ~ we watch because it's fascinating and we keep watching because of the important questions that are triggered inside of us that need answering. We watch because it isn't us. Yet as we get older and wiser we understand that it could easily have been us and might be us the next time. As I watch the crisis in Japan I hear a myriad of questions about our own preparedness, security, personal safety and planning swirling all around. The opportunities for anxiety mount and are many. Yet so too are the opportunities for my strength and God's grace to show themselves.
When I am on the outside looking in on someone else's tragedy, the questions I ask myself are "how does he/she do it every day?", or "would I be able to do what they are doing?", or "would my faith get me through?" As you watch Team Conrad I wonder what your questions are and I hope and pray that you are not backing away from looking at them. There is so much to learn about yourself and God.
Now that I am on the inside those hypothetical questions of mine are getting real time answers. "It is what it is", a fundamental Truth I accepted long before Phil got cancer. I do whatever is in front of me every day because honestly, how else does one get through life? By doing what isn't? By trying to make things happen that are out of one's control? By pushing a rock uphill and just wishing for things to be different than they are? I strive to be fully responsible for my choices in life thank you very much, but, "In his heart a man plans his course, but the LORD determines his steps" Proverbs 16:9. Having said that, I graciously lay it all at the foot of Christ to get through the day.
Dan Millman in Way of the Peaceful Warrior says " Every positive change--every jump to a higher level of energy and awareness--involves a rite of passage. Each time to ascend to a higher rung on the ladder of personal evolution, we must go through a period of discomfort, of initiation. I have never found an exception." That has been my absolute experience so why should this rite of passage be any different. I fully expect to come out the other side of this crucible wiser, stronger and definitely more aware. I already am in a myriad of ways.
One thing is for sure. I could never write just any book. It would have to be a memoir. To create characters and give them life and personality and create a story and plot lines and dialog... probably not going to happen. I'll stick to what I know how to do ~ talk about what is happening in my life, my mind and my heart. To write about the examined life I live and to encourage you in living yours similarly. But my story isn't finished yet and I've no idea how it will turn out. Until I do there will be no book, only these musings and writings. I trust that I will know when it is finished, but until then, there is nothing like knowing oneself intimately and giving of yourself, loving freely and vulnerably. May God continue to direct my steps on that path, and you in walking on yours.
post script
The Conrad brother's, Jamie, Phil and David will be traveling to Stone Harbor, New Jersey this weekend to spend some family time with their mother Margaret and their father, James Conrad, SR. who has entered hospice care for end-stage prostate cancer. Please keep the entire family in your prayers as they travel and meet together to share fellowship this one last time.
I believe there is a fundamental fascination we have as human beings when there is an accident or tragedy unfolding in front of us ~ we watch because it's fascinating and we keep watching because of the important questions that are triggered inside of us that need answering. We watch because it isn't us. Yet as we get older and wiser we understand that it could easily have been us and might be us the next time. As I watch the crisis in Japan I hear a myriad of questions about our own preparedness, security, personal safety and planning swirling all around. The opportunities for anxiety mount and are many. Yet so too are the opportunities for my strength and God's grace to show themselves.
When I am on the outside looking in on someone else's tragedy, the questions I ask myself are "how does he/she do it every day?", or "would I be able to do what they are doing?", or "would my faith get me through?" As you watch Team Conrad I wonder what your questions are and I hope and pray that you are not backing away from looking at them. There is so much to learn about yourself and God.
Now that I am on the inside those hypothetical questions of mine are getting real time answers. "It is what it is", a fundamental Truth I accepted long before Phil got cancer. I do whatever is in front of me every day because honestly, how else does one get through life? By doing what isn't? By trying to make things happen that are out of one's control? By pushing a rock uphill and just wishing for things to be different than they are? I strive to be fully responsible for my choices in life thank you very much, but, "In his heart a man plans his course, but the LORD determines his steps" Proverbs 16:9. Having said that, I graciously lay it all at the foot of Christ to get through the day.
Dan Millman in Way of the Peaceful Warrior says " Every positive change--every jump to a higher level of energy and awareness--involves a rite of passage. Each time to ascend to a higher rung on the ladder of personal evolution, we must go through a period of discomfort, of initiation. I have never found an exception." That has been my absolute experience so why should this rite of passage be any different. I fully expect to come out the other side of this crucible wiser, stronger and definitely more aware. I already am in a myriad of ways.
One thing is for sure. I could never write just any book. It would have to be a memoir. To create characters and give them life and personality and create a story and plot lines and dialog... probably not going to happen. I'll stick to what I know how to do ~ talk about what is happening in my life, my mind and my heart. To write about the examined life I live and to encourage you in living yours similarly. But my story isn't finished yet and I've no idea how it will turn out. Until I do there will be no book, only these musings and writings. I trust that I will know when it is finished, but until then, there is nothing like knowing oneself intimately and giving of yourself, loving freely and vulnerably. May God continue to direct my steps on that path, and you in walking on yours.
post script
The Conrad brother's, Jamie, Phil and David will be traveling to Stone Harbor, New Jersey this weekend to spend some family time with their mother Margaret and their father, James Conrad, SR. who has entered hospice care for end-stage prostate cancer. Please keep the entire family in your prayers as they travel and meet together to share fellowship this one last time.
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