Moving quickly because blood in urine began again while still on antibiotic, and because they do not know the cause, NIH now wants me in Bethesda in two days not 10 days. Did not sleep well last night but I did write a little something at 1:30am:
If I can be there at just the right moment,
hearing the squeegee slap against the shower wall.
She slides the curtain open and steps into
the towel I hold and draws it to her heart.
I cradle her face between my hands and see through
her bright eyes into her soul and know
I love her.
Gratitude.
Bill
Saturday, April 30, 2011
Thursday, April 28, 2011
The unknown "one more thing"
The previous "one more thing" was another Urinary tract infection. Turns out, it is not a UTI. NIH has studied the culture and it is not growing like a UTI, but they don't know what it is instead. So now I get to go back to Bethesda early for a round of CT scan, MRI and maybe PET to see what is holding up the urine show. Where's the cranberry hue coming from? I guess you could say to me . . . . . . . . ., "Urine for it now!"
Tuesday, April 26, 2011
One more thing
Have not had words come to mind for awhile about what to write. There is a certain slogging through mud feel to how it's going since going off and now back on my Avatar regimen. The Avastin infusion continues every other Thursday. The "little white pill of poison" aka Tarceva is at a lower dose now and so far the side effects are not as rough as before. I have more energy - I last a little longer in the mornings and my afternoon funk is shorter, meaning I can drive and get out and about as early as 5pm. Past 9ishpm though is still a cur off of energy. Get horizontal.
Last time in Bethesda they did a cystoscopy, looking inside my bladder up to the tubes coming from my kidneys. They used a mini video camera but we will leave out how they got the camera in place. That video showed no problem in bladder, but also did not explain my chronic microscopic blood in urine. Well, whoopty dooo, now I have blood in my urine. Can you say cranberry juice with chocolate syrup mixed in? The chief research nurse says that is a very helpful description of the blood so I thought you might appreciate the visual too.
It is called a "UTI", urinary tract infection. I never had one before, but I guess it is very familiar to most women. What a gift it is to pee red in the middle of the night. What? Did I eat too many cherries? Is it Christmas? I was so taken aback that I erased it from my willingness to tell anyone (Jacki). A few more red streamlets (streamlets? Not very manly my head says) and I did finally fess up on the way to Tucson for her sister's b-Day. Late that night I agreed to reach out to the on call doctor back east. He wanted me to go to ER now, but I knew it would be all better in the morning after a good night's sleep. 'Twas the next night, late, that I followed his instruction. That's when I got the cranberry chocolate.
So the ER doc diagnosed UTI, and I took antibiotic for a week and it went away. Not!! 10 days later, same thing again but darker. ER again, sample, antibiotic, but this time I sit here 3 days later still feeling an ache lower back - kidney area). Doc says the culture isn't growing like a UTI bacteria and maybe it is something in my kidney. And there my dear reader, is the title of today's blog, "One More Thing". I'll know more in 2 days, but in the mean time I get to view the movie in my mind in fast forward, but it wants to stick on the same few frames of disaster. My own little internal tsunami of tumor exploded and rushing around my defenseless body. Stay away - it might get messy. Why don't movies come with cartoons anymore?
Anyway, I can make light and try to entertain. Or, I can tell you that while I still do not think I fear death, I do fear excruciating pain. The cancer has begun to spread into my bones. I swear I can feel spots of it when I lay down in certain positions. If the pain get too great, then doctors and even my sponsor start talking about morphine and even methadone. I am 17 years clean from drugs and now cancer contemplates screwing with my recovery. It sure is easy to slip into projecting my minds version of the future.
So instead I can breathe and notice my breath, slowly in and easy out. Again. Notice and listen to my breath. Breathing, God's gift of a built in little meditator. Slow down Bill. Let it go and worry if or when it comes to pass. Breathe, deeply in and peacefully out. Right here is where I am. The time is right nowe. Right here and right now, I have all I need to be happy with the life I have and the experience that has led me to this moment. And be grateful for my wife and daughter, friends and family, people who populate my life and offer love and acceptance anytime I am willing/able to receive. Thank you,
Bill
Last time in Bethesda they did a cystoscopy, looking inside my bladder up to the tubes coming from my kidneys. They used a mini video camera but we will leave out how they got the camera in place. That video showed no problem in bladder, but also did not explain my chronic microscopic blood in urine. Well, whoopty dooo, now I have blood in my urine. Can you say cranberry juice with chocolate syrup mixed in? The chief research nurse says that is a very helpful description of the blood so I thought you might appreciate the visual too.
It is called a "UTI", urinary tract infection. I never had one before, but I guess it is very familiar to most women. What a gift it is to pee red in the middle of the night. What? Did I eat too many cherries? Is it Christmas? I was so taken aback that I erased it from my willingness to tell anyone (Jacki). A few more red streamlets (streamlets? Not very manly my head says) and I did finally fess up on the way to Tucson for her sister's b-Day. Late that night I agreed to reach out to the on call doctor back east. He wanted me to go to ER now, but I knew it would be all better in the morning after a good night's sleep. 'Twas the next night, late, that I followed his instruction. That's when I got the cranberry chocolate.
So the ER doc diagnosed UTI, and I took antibiotic for a week and it went away. Not!! 10 days later, same thing again but darker. ER again, sample, antibiotic, but this time I sit here 3 days later still feeling an ache lower back - kidney area). Doc says the culture isn't growing like a UTI bacteria and maybe it is something in my kidney. And there my dear reader, is the title of today's blog, "One More Thing". I'll know more in 2 days, but in the mean time I get to view the movie in my mind in fast forward, but it wants to stick on the same few frames of disaster. My own little internal tsunami of tumor exploded and rushing around my defenseless body. Stay away - it might get messy. Why don't movies come with cartoons anymore?
Anyway, I can make light and try to entertain. Or, I can tell you that while I still do not think I fear death, I do fear excruciating pain. The cancer has begun to spread into my bones. I swear I can feel spots of it when I lay down in certain positions. If the pain get too great, then doctors and even my sponsor start talking about morphine and even methadone. I am 17 years clean from drugs and now cancer contemplates screwing with my recovery. It sure is easy to slip into projecting my minds version of the future.
So instead I can breathe and notice my breath, slowly in and easy out. Again. Notice and listen to my breath. Breathing, God's gift of a built in little meditator. Slow down Bill. Let it go and worry if or when it comes to pass. Breathe, deeply in and peacefully out. Right here is where I am. The time is right nowe. Right here and right now, I have all I need to be happy with the life I have and the experience that has led me to this moment. And be grateful for my wife and daughter, friends and family, people who populate my life and offer love and acceptance anytime I am willing/able to receive. Thank you,
Bill
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