Monday, June 30, 2008
PET/CT In The Morning
We have to be at IU downtown by 7:30. This weekend was fun; I finished the basement. Spent time with Alison. Watched Spiderwick Chronicles.
Wednesday, June 25, 2008
Neuro Origin
Yesterday we received completely unexpected word. The news we received did not negate Alison's Neuroendocrine Cancer diagnosis. It just complicated it.
For many tests, we tried to find where the cancer started. Through a colonoscopy, endoscopy, wireless endoscopy, and various other tests, Alison was a champ. The tests showed nothing. Just that her bone marrow was Neuroendocrine, and the CT scans showed a big mass in her belly. In the last two years, the neuroendocrine cancer spread to her liver, and a new mass developed in the lining of her lungs.
Then we got a biopsy of the big mass in her belly, to make sure the right diagnosis was found in the neuroendocrine cancer in her bone marrow biopsy.
Which brings us to now: the results are: her big mass is a neurofibroma. Neurofibromas are non-cancerous (Don't gulp because her bone marrow is still neuroendocrine cancer) in that they do not invade the organs, typically do not spread, etc. Neurofibromas are genetically inherited, and can lead to cancer. That's what we suspect happened in Alison's case: Gene kicks in gear, mass appears, mass leads to development in the bones of Neuroendocrine cancer.
So to recount, we know that her bones have cancer, and that the big mass is a neurofibroma. What we don't know for sure is which type is in her liver and her lungs, although atleast the lung spot is in the lining, not overtaking the lung, which makes me think it's a neurofibroma. The liver lesions are actually in the liver, making me speculate that they're the malignant neuroendocrine cancer.
Some other facts to note are that 1) neurofibroma has no treatment, except for removal by surgery, 2) removal by surgery can be effective, except that hers is wrapping around her spine and nerves there, and 3) one can live for decades with neurofibromas.
And from here, we begin concentrating on two fronts: the fight against her Neuroendocrine cancer, and the control of her Neurofibromas. In the fight against the neuroendocrine cancer, IU is sending for the bone marrow biopsy slides before they can choose the next step, we're doing some more testing including a PET/CT Scan and a 24 hr urinalysis. In controlling her neurofibromas, we're going to see a neurosurgeon about the possibility of either removing or reducing her big belly mass. Atleast the kidney and aorta could go back to their normal position if they were able to reduce it.
I'll understand if you have to re-read this post several times to understand what I wrote.
Any Questions?
For many tests, we tried to find where the cancer started. Through a colonoscopy, endoscopy, wireless endoscopy, and various other tests, Alison was a champ. The tests showed nothing. Just that her bone marrow was Neuroendocrine, and the CT scans showed a big mass in her belly. In the last two years, the neuroendocrine cancer spread to her liver, and a new mass developed in the lining of her lungs.
Then we got a biopsy of the big mass in her belly, to make sure the right diagnosis was found in the neuroendocrine cancer in her bone marrow biopsy.
Which brings us to now: the results are: her big mass is a neurofibroma. Neurofibromas are non-cancerous (Don't gulp because her bone marrow is still neuroendocrine cancer) in that they do not invade the organs, typically do not spread, etc. Neurofibromas are genetically inherited, and can lead to cancer. That's what we suspect happened in Alison's case: Gene kicks in gear, mass appears, mass leads to development in the bones of Neuroendocrine cancer.
So to recount, we know that her bones have cancer, and that the big mass is a neurofibroma. What we don't know for sure is which type is in her liver and her lungs, although atleast the lung spot is in the lining, not overtaking the lung, which makes me think it's a neurofibroma. The liver lesions are actually in the liver, making me speculate that they're the malignant neuroendocrine cancer.
Some other facts to note are that 1) neurofibroma has no treatment, except for removal by surgery, 2) removal by surgery can be effective, except that hers is wrapping around her spine and nerves there, and 3) one can live for decades with neurofibromas.
And from here, we begin concentrating on two fronts: the fight against her Neuroendocrine cancer, and the control of her Neurofibromas. In the fight against the neuroendocrine cancer, IU is sending for the bone marrow biopsy slides before they can choose the next step, we're doing some more testing including a PET/CT Scan and a 24 hr urinalysis. In controlling her neurofibromas, we're going to see a neurosurgeon about the possibility of either removing or reducing her big belly mass. Atleast the kidney and aorta could go back to their normal position if they were able to reduce it.
I'll understand if you have to re-read this post several times to understand what I wrote.
Any Questions?
Tuesday, June 24, 2008
Today
We're getting around and will head downtown this morning to hear the results of her biopsy, and to plan her treatment. We're both nervous, but I have great faith that no matter what, it'll get better from here. Doing treatment rather than lying in wait. Being proactive instead of our current 'wait and see' approach.
I don't know if this will translate, but last night when we hugged, I wanted her to feel every sunset we'd had together. I could imagine all the love in seven year's of shared sunlight, and wanted to give them to her to make her feel safe.
I don't know if this will translate, but last night when we hugged, I wanted her to feel every sunset we'd had together. I could imagine all the love in seven year's of shared sunlight, and wanted to give them to her to make her feel safe.
Saturday, June 21, 2008
Untitled
I grew up on the water.
For as long as I can remember I heard the boats absorb the waves, hitting the docks. I heard aluminum collide with semi-submerged tires, floats, wooden dock and steel poles that supported them.
Their gentle tinging was a big wind chime, and it slowed my pulse.
I remember considering their plight, rocking against the storms, facing winds and being pelted by raindrops.
Each morning as the clouds rolled away, and the grasses shed their last drops, the boats would be there, strong as ever, drying out as well.
They weathered well, all friction and force.
And that's how it is now, in the midst of a storm, holding fast and waiting for the sun. Our love is our mooring, and we collide rhythmically, with the faith that we can make it until morning.
For as long as I can remember I heard the boats absorb the waves, hitting the docks. I heard aluminum collide with semi-submerged tires, floats, wooden dock and steel poles that supported them.
Their gentle tinging was a big wind chime, and it slowed my pulse.
I remember considering their plight, rocking against the storms, facing winds and being pelted by raindrops.
Each morning as the clouds rolled away, and the grasses shed their last drops, the boats would be there, strong as ever, drying out as well.
They weathered well, all friction and force.
And that's how it is now, in the midst of a storm, holding fast and waiting for the sun. Our love is our mooring, and we collide rhythmically, with the faith that we can make it until morning.
Thursday, June 19, 2008
Tuesday and Tonight
Tuesday will be the day we hear the results of Alison's biopsy. And hopefully, we hear about the next step, some treatment to do NOW. We're both antsy not doing anything, though Alison has developed a routine to her misery. Nausea has faded a little, and now its a simple pain-management and fever watch. We learned that her was-nightly-now-persistent fever is called "tumor fever." So, Tuesday it is. Endure Endure Endure.
Tonight I was installing baseboard in the basement, when I caught myself making a list in my head: "Tips to help adapt to life with cancer." I'm not being pessimistic when I say that each of us, if we live long enough, will have cancer. So in my optomistic mind, I thought, well, might as well indulge and write a few things that Alison has had to adapt to down. SO here a just a few:
Get used to needles.
Get used to pills.
Get used to surgery and wounds.
Don't fight nausea.
Let yourself rest more.
Cling to routines.
Let yourself have perspective.
Take things a day at a time.
If 2 years ago you'd have told me that Alison would become a pro at all the above, or better yet, HAVE TO BE a pro at those, I'd have said it was an uphill battle. But she has conquered each, one step at a time.
Go baby Go.
Tonight I was installing baseboard in the basement, when I caught myself making a list in my head: "Tips to help adapt to life with cancer." I'm not being pessimistic when I say that each of us, if we live long enough, will have cancer. So in my optomistic mind, I thought, well, might as well indulge and write a few things that Alison has had to adapt to down. SO here a just a few:
Get used to needles.
Get used to pills.
Get used to surgery and wounds.
Don't fight nausea.
Let yourself rest more.
Cling to routines.
Let yourself have perspective.
Take things a day at a time.
If 2 years ago you'd have told me that Alison would become a pro at all the above, or better yet, HAVE TO BE a pro at those, I'd have said it was an uphill battle. But she has conquered each, one step at a time.
Go baby Go.
Monday, June 16, 2008
Obscure Advice About Love and Relationships
They are counter-intuitive.
Atleast in my experience. (One should really ask my Grandmother, who drove her relationship for 53 years with my Grandfather before he died)
Most people judge relationships by how they're treated. What they get. How they feel. How they are feeling. How the other person makes us feel. And true, when it's firing on all cylinders, a good relationship brings a comfort and satisfaction that soothes.
But that outlook won't cut the mustard. One has to be in a relationship to give love to the other person, without want in return. That's difficult sometimes. Everyone leaves drawers open, snores, fails to put away their razor or vitamins, or dishes. Everyone is flawed.
Not too many people are happy riding around in an old beat up car, doors smashed in from snow drifts, ceiling falling down from age and flapping in the wind, windshield cracked, smoke coming out of the exhaust. Most people are a little embarrassed by a POS car. But that's every relationship. They're simply POS cars with drivers. And the driver is always you. The point is to let go and love that old car. To wash over the dents, to fill it up trusting it'll get you home in spite of the clunk and nashing sound it was making when you shut it down. If you're happy there at the pump with your POS, you're half of a happy relationship. Your significant other is also the driver of the other half of the relationship, which to him or her, feels like they're behind the wheel of a car with no A/C, static in the speakers, a glove box that won't shut, and a nasty stain in the back seat that has a stench on the hot days.
So I guess the trick is to accept and love. To simply love because that's what you do, not because that's what you want in return. Relationships aren't vending machines. They're POS cars. Drive and smile.
Atleast in my experience. (One should really ask my Grandmother, who drove her relationship for 53 years with my Grandfather before he died)
Most people judge relationships by how they're treated. What they get. How they feel. How they are feeling. How the other person makes us feel. And true, when it's firing on all cylinders, a good relationship brings a comfort and satisfaction that soothes.
But that outlook won't cut the mustard. One has to be in a relationship to give love to the other person, without want in return. That's difficult sometimes. Everyone leaves drawers open, snores, fails to put away their razor or vitamins, or dishes. Everyone is flawed.
Not too many people are happy riding around in an old beat up car, doors smashed in from snow drifts, ceiling falling down from age and flapping in the wind, windshield cracked, smoke coming out of the exhaust. Most people are a little embarrassed by a POS car. But that's every relationship. They're simply POS cars with drivers. And the driver is always you. The point is to let go and love that old car. To wash over the dents, to fill it up trusting it'll get you home in spite of the clunk and nashing sound it was making when you shut it down. If you're happy there at the pump with your POS, you're half of a happy relationship. Your significant other is also the driver of the other half of the relationship, which to him or her, feels like they're behind the wheel of a car with no A/C, static in the speakers, a glove box that won't shut, and a nasty stain in the back seat that has a stench on the hot days.
So I guess the trick is to accept and love. To simply love because that's what you do, not because that's what you want in return. Relationships aren't vending machines. They're POS cars. Drive and smile.
Saturday, June 14, 2008
Admitted and Long Night
The procedure took way too long yesterday, so I was suspecting something went wrong, reading my magazine. I got up for coffee and cookies (sorry Alison, it's bad of me to eat when you cannot), and after they were gone, I got up for coke and pretzels. 2 hours gone for a ten minute procedure... Finally the doctor returned along with Alison in her bed, and he explained to me that she experienced some bleeding but he opted to get the sample anyway. He actually collected several. I asked if it wasn't normal to bleed when they stab someone, but he intimated that this was more than normal, and she'd have to stay overnight to make sure she wasn't bleeding internally.
Her blood counts went from 9.3 to 7.6 post-surgery. We went upstairs, and she had to wait in the hall on her bed while they returned her roommate to the room first. Yeah, there was a roommate, which is fine if the room is large enough to accomadate and didn't smell like permanent glade air freshener covering up death and disease. I was really proud of Alison for adapting to that situation, though it was challenging to be too motivated in a tiny bathroom that the IV hanger barely fit in, with those used-to-be 1 inch tiles with grout muddied up by 30 years of consistent use. But if she wasn't complaining, I couldn't disclose how I missed that gucci hotel room-like room at Community North as I sat in the single visitor's chair overnight. To IU's credit, their new building for cancer patients opens in September. But last night was long, with a transfusion of two bags of blood.
By this morning she'd proved she wasn't bleeding inside, and we were released for home. She's resting up now, extremely sore from the whole thing. We don't have the results of the core samples yet, and won't have them until atleast Wednesday.
Her blood counts went from 9.3 to 7.6 post-surgery. We went upstairs, and she had to wait in the hall on her bed while they returned her roommate to the room first. Yeah, there was a roommate, which is fine if the room is large enough to accomadate and didn't smell like permanent glade air freshener covering up death and disease. I was really proud of Alison for adapting to that situation, though it was challenging to be too motivated in a tiny bathroom that the IV hanger barely fit in, with those used-to-be 1 inch tiles with grout muddied up by 30 years of consistent use. But if she wasn't complaining, I couldn't disclose how I missed that gucci hotel room-like room at Community North as I sat in the single visitor's chair overnight. To IU's credit, their new building for cancer patients opens in September. But last night was long, with a transfusion of two bags of blood.
By this morning she'd proved she wasn't bleeding inside, and we were released for home. She's resting up now, extremely sore from the whole thing. We don't have the results of the core samples yet, and won't have them until atleast Wednesday.
Thursday, June 12, 2008
Biopsy Tomorrow
Tomorrow morning (0700) we'll be at IU for a CT-guided biopsy of Alison's main tumor. (The retropetrineal mass). IU says they will be better prepared to make a treatment decision after seeing a sample. They are concerned by the presentation of her cancer. No carcinoid syndrome. Faster than typical Neuroendocrine tumors. Somewhat responsive to chemo, though most Carcinoid Neuroendocrine cancer is not. I tend to agree with them; they should be absolutely prepared for this decision.
Today I came home to take Alison for a blood transfusion, but she's not doing well, feeling rest is better than seeing the doctor yet again. Her blood counts are not really all that bad, and can definitely make it through the weekend, so I agreed. It seems like resting up for our IU trip tomorrow makes sense.
Today I came home to take Alison for a blood transfusion, but she's not doing well, feeling rest is better than seeing the doctor yet again. Her blood counts are not really all that bad, and can definitely make it through the weekend, so I agreed. It seems like resting up for our IU trip tomorrow makes sense.
Saturday, June 7, 2008
The Relay
Tonight Alison and I (plus family and friends) attended the Relay for Life. Our Brother-In-Law's Mother, Susan, put Ali's Allies (a team to support Alison) together and was the driving factor in our whole participation. It showed true caring and character, extraordinary compassion and kindness on her part. She has a big heart. And if you look below, she has the red shirt on, showing her Captainship of our team. She was there all day.
While watching Alison at the event, I was struck by her grace. She wore a purple shirt, signifying her cancer survivorship, and when I watched her dawn her sash, I wondered if I would handle her situation with half as much class. She was all smiles, her spirit glowing. I was proud of her. Somehow her strength still stops me and makes me watch.
So here are a few photos. I have new news, but I'll blog about that later...
Oh, and thanks to everyone who gave. I think we raised more than 700$ for the American Cancer Society.
Friday, June 6, 2008
Two Years
So technically Alison got diagnosed on 20 June 2006. But if my memory serves me, today is two years from the doctor giving us a list of three types of cancer she might have, and then turning her on her side to dig out sample from her pelvic bone while I held her hand. Funny though, at the time those three options didn't key in as cancer, just as some big worded things we needed to get fixed. Cancer wasn't even a possibility to me, even as I heard the words "multiple myeloma, Hodgkin's lymphoma, leukemia."
Cancer has changed our relationship. Deepened it. I know Alison in ways I never would have. We've talked about things that two young lovers never should. And my love for her has turned from fresh cut flowers to a solid oak tree.
Today we hear about the next step. The doctors will have chosen one by this afternoon. We also go to make sure her kidney stent is placed correctly. In December 2006 we went to the H. Lee Moffitt cancer center. At the time it felt like a hail Mary. We were down on our options; Ali was in a lot of pain. We're sort of there now...again. Everyone is in the end zone waiting for the pass.
I'm going on the record now, saying no matter what happens, I'd do this one hundred times more. I'd walk this walk with Alison time and time again.
Thanks for enriching my life, Ali. I love you with all my heart. I hope you feel better.
Cancer has changed our relationship. Deepened it. I know Alison in ways I never would have. We've talked about things that two young lovers never should. And my love for her has turned from fresh cut flowers to a solid oak tree.
Today we hear about the next step. The doctors will have chosen one by this afternoon. We also go to make sure her kidney stent is placed correctly. In December 2006 we went to the H. Lee Moffitt cancer center. At the time it felt like a hail Mary. We were down on our options; Ali was in a lot of pain. We're sort of there now...again. Everyone is in the end zone waiting for the pass.
I'm going on the record now, saying no matter what happens, I'd do this one hundred times more. I'd walk this walk with Alison time and time again.
Thanks for enriching my life, Ali. I love you with all my heart. I hope you feel better.
Wednesday, June 4, 2008
Updated Update
IU was good, and I know this sounds pretentous, but the Doc was the first in a long time that I felt was smarter than me. Lately it's seemed they were all unprepared, unread-in on her case, and I was the one teaching them. Yesterday I was learning a lot in a short amount of time. She was quite prepared, and though she didn't have any solutions, she had many suggestions, and is talking with her other doctors, and talking with specialists from MD Anderson and Dana Farber today to see what option is the collective favorite.
Hopefully Ali will be a candidate for a clinical study, because most of the drugs are 2-3k per round. Ouch. I can just imagine the fight with insurance over that.
So we'll hear back from IU tomorrow, Friday, after our urology visit.
Today Alison and I are visiting the IU Medical Center in Carmel. There is a clinical study going on that we're going to see if she's a good candidate for. Wish us luck.
As far as her condition currently, fair to midlings is an over estimate. She's continued her radiation side effects (nausea vomitting burnt esophagus fatigue etc) as well as some bone pain and relative immobility. She's not staying in front of the pain because she vomits the pills as soon as she takes them. She's also got some effects from the kidney stent happening (blood in urine, abdominal cramping, etc)
Things are rough.
We see the urologist and the oncologist on Friday as well...
The light notes are that my nephew continues to help, and Alison is attended-to very nicely this week by her mom. There's nothing quite as soothing as motherly-nurturing.
Hopefully Ali will be a candidate for a clinical study, because most of the drugs are 2-3k per round. Ouch. I can just imagine the fight with insurance over that.
So we'll hear back from IU tomorrow, Friday, after our urology visit.
Today Alison and I are visiting the IU Medical Center in Carmel. There is a clinical study going on that we're going to see if she's a good candidate for. Wish us luck.
As far as her condition currently, fair to midlings is an over estimate. She's continued her radiation side effects (nausea vomitting burnt esophagus fatigue etc) as well as some bone pain and relative immobility. She's not staying in front of the pain because she vomits the pills as soon as she takes them. She's also got some effects from the kidney stent happening (blood in urine, abdominal cramping, etc)
Things are rough.
We see the urologist and the oncologist on Friday as well...
The light notes are that my nephew continues to help, and Alison is attended-to very nicely this week by her mom. There's nothing quite as soothing as motherly-nurturing.
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