Tuesday, April 7th -
Just a quick note this time. Last night was rough with recurrence of several symptoms. I had another CT Scan late in the evening. Comparing the one last night with the one from the previous Tuesday night in Olympia, there's very little progress.
I have a restriction that has not opened up. Docs are now talking seriously about going in for surgery to fix the blockage. Maybe as early as Wednesday. The up side is that my recovery should be two or three days ... not the 10 or more with the original surgery.
I'm not sure what the risks are from another surgery of this type. The doctor who will most likely be performing it is very skilled and highly nationally/ internationally regarded, so I'll be in good hands. This is a different doc than the one who did the bladder removal surgery on March 12th, but still with VMMC.
Tuesday, April 7, 2009
Monday, April 6, 2009
Waiting
Monday, April 6th -
Still at Virginia Mason in Seattle, waiting for my pipeline to open up on its own or a decision to go in, dig up the bad section and repair it. It could be several more days before they get to the point of doing another surgery. It's like being halfway up a glacier and trying to watch it move.
Good news? Just had a CT Scan done that will give some good info for upcoming decisions.
Bad news? I sit here watching the sun move across the sky, thinking of what I'd like to be doing outside, waiting for some breakthrough, worried that somehow I won't fully recover.
Entertainment? I have family and friends stop in to visit pretty often. Last night I beat Lauril & Kehlen in 3 handed cribbage. Of course they said they let me win because I'm a wimp.
I'm doing as much walking as I can which involves traipsing up and down the same hall way dodging nurses and other patients doing the same thing. I've come up with a scheme to get sponsors, jackets and hats like NASCAR drivers. There's plenty of medical equipment companies I'm sure would love to get involved ... Alaris, Baird, who ever makes all the pain meds.
I also have my 'buddy' - the pole that my IV pumps are attached to. It's on wheels and accompanies me everywhere! Daren thinks I should dress it up with hat and jacket.
These few days will pass & I'll get home again, start enjoying the warm weather, get back to work, and forget about the noise, interruptions, smells, alarms going off, and WAITING that I have to get through. I'll update the blog again in a couple days; hopefully to report progress and a discharge order!
Jim
Still at Virginia Mason in Seattle, waiting for my pipeline to open up on its own or a decision to go in, dig up the bad section and repair it. It could be several more days before they get to the point of doing another surgery. It's like being halfway up a glacier and trying to watch it move.
Good news? Just had a CT Scan done that will give some good info for upcoming decisions.
Bad news? I sit here watching the sun move across the sky, thinking of what I'd like to be doing outside, waiting for some breakthrough, worried that somehow I won't fully recover.
Entertainment? I have family and friends stop in to visit pretty often. Last night I beat Lauril & Kehlen in 3 handed cribbage. Of course they said they let me win because I'm a wimp.
I'm doing as much walking as I can which involves traipsing up and down the same hall way dodging nurses and other patients doing the same thing. I've come up with a scheme to get sponsors, jackets and hats like NASCAR drivers. There's plenty of medical equipment companies I'm sure would love to get involved ... Alaris, Baird, who ever makes all the pain meds.
I also have my 'buddy' - the pole that my IV pumps are attached to. It's on wheels and accompanies me everywhere! Daren thinks I should dress it up with hat and jacket.
These few days will pass & I'll get home again, start enjoying the warm weather, get back to work, and forget about the noise, interruptions, smells, alarms going off, and WAITING that I have to get through. I'll update the blog again in a couple days; hopefully to report progress and a discharge order!
Jim
Saturday, April 4, 2009
Another Side Trip
Saturday Morning - April 2nd
It's easy to take your stomach and bowels for granted. You eat & drink, things go in and out. A few minor inconveniences based on what & how much you put in or illnesses like flu. At least for me, that's the way things have gone ... until earlier this week. Without getting into too much detail, last Tuesday afternoon, I started have stomach pain ... kind of like cramps. I thought I could deal with the pain until Wednesday morning when I was due up at Virginia Mason anyway for a scheduled appointment.
By 9 pm Tuesday, I was headed to the emergency room at Virginia Mason with my daughters, Lauril & Kehlen. We got to I-5 in Olympia, and ended up at emergency room at St Pete's ... the pain was barely controllable. CT scan showed a bowel restriction; OK, let's get it unplugged and I can get on with things. No such luck.
Wednesday morning I found myself in an ambulance headed to VMMC. I got here & had a horde of docs look at me, with more poking, proding and x rays. Four days later, I'm still here trying to get things calmed down enough that the restriction will resolve itself & I'll get back to normal. I've got a tube down my nose into my stomach. It's sucking green stuff out of my stomach (same thing going on in yours, too). I haven't had anything to eat or drink since Tuesday afternoon. I'm getting everything I need by IV.
All the docs assure me that things are improving, so I'll be walking as much as possible and trying to help this blockage resolve itself. The worst case scenario is another round of surgery to correct the blockage. No one wants that, so it's be patient. There's not many places where the most frequent question you're asked is, have you passed gas yet? This is a sure sign that bowels are functioning (see my earlier entry on 'bowel tones').
On the positive side, I have all the tubes out of my abdomen now and things are healing pretty well. I have an impressive scar!
It's easy to take your stomach and bowels for granted. You eat & drink, things go in and out. A few minor inconveniences based on what & how much you put in or illnesses like flu. At least for me, that's the way things have gone ... until earlier this week. Without getting into too much detail, last Tuesday afternoon, I started have stomach pain ... kind of like cramps. I thought I could deal with the pain until Wednesday morning when I was due up at Virginia Mason anyway for a scheduled appointment.
By 9 pm Tuesday, I was headed to the emergency room at Virginia Mason with my daughters, Lauril & Kehlen. We got to I-5 in Olympia, and ended up at emergency room at St Pete's ... the pain was barely controllable. CT scan showed a bowel restriction; OK, let's get it unplugged and I can get on with things. No such luck.
Wednesday morning I found myself in an ambulance headed to VMMC. I got here & had a horde of docs look at me, with more poking, proding and x rays. Four days later, I'm still here trying to get things calmed down enough that the restriction will resolve itself & I'll get back to normal. I've got a tube down my nose into my stomach. It's sucking green stuff out of my stomach (same thing going on in yours, too). I haven't had anything to eat or drink since Tuesday afternoon. I'm getting everything I need by IV.
All the docs assure me that things are improving, so I'll be walking as much as possible and trying to help this blockage resolve itself. The worst case scenario is another round of surgery to correct the blockage. No one wants that, so it's be patient. There's not many places where the most frequent question you're asked is, have you passed gas yet? This is a sure sign that bowels are functioning (see my earlier entry on 'bowel tones').
On the positive side, I have all the tubes out of my abdomen now and things are healing pretty well. I have an impressive scar!
Monday, March 30, 2009
Catchin Up
Monday - March 30th
It's the end of March already. Yesterday was a warm, sunny Spring day. Lauril got this photo of a visitor to our hummingbird feeder.
Saturday was the annual sheep shearing at our neighbors. Forty six sheep got undressed just in time for wind and rain. Fortunately they had some cover to get under. I went over for a couple of hours to 'supervise'. Lauril had recruited 17 of her buds to help out! I think the main attraction was great food, but they also seemed to have fun wrastlin the sheep.
I'm feeling pretty well these past few days. I went for a walk of about a mile yesterday. It's amazing how quickly I've lost muscle tone and stamina, but I'll get it back.
Wednesday, it's back to Virginia Mason to get tubes out and learn more about living with 'neo'. It should just be a quick overnighter and I'll be home on Thursday.
I can't tell you how fortunate I feel to have caught this cancer early enough to have a successful outcome. Also, the level of medical care has been outstanding. But what will leave a lasting impression on me is the concern and support we've received from all of you!!
As my recovery progresses I'll probably have fewer blog entries. I'll let you know when I get to the last one.
Tuesday, March 24, 2009
Quick, Easy and Out of There
Tuesday, March 24th around 6 p.m. -
The doctors released me at about 2 p.m. and Daren picked me up. Back at home now and feeling good. Pretty much pain free except when I sit in one position too long. This diet over the past couple of weeks has caused me to shed nearly 10 pounds. So my butt is now bony.
Early warning signs are what I'm now focused on ... get in the proper amount of fluids. It's not some much the total quantity, but making sure I keep drinking at least 1 cup per hour while awake. That should keep "Neo" happy. I'm back on soft food diet again just to make doubly sure my food processing system is open for business.
The doctors & staff at the hospital assured me that it is not uncommon or unexpected that patients with my type of surgery will have stumbles and minor setbacks as they learn new limits and ways of managing. I'm hearing many stories of people who are living normal lives with neobladders, so it is possible for me, too.
The doctors released me at about 2 p.m. and Daren picked me up. Back at home now and feeling good. Pretty much pain free except when I sit in one position too long. This diet over the past couple of weeks has caused me to shed nearly 10 pounds. So my butt is now bony.
Early warning signs are what I'm now focused on ... get in the proper amount of fluids. It's not some much the total quantity, but making sure I keep drinking at least 1 cup per hour while awake. That should keep "Neo" happy. I'm back on soft food diet again just to make doubly sure my food processing system is open for business.
The doctors & staff at the hospital assured me that it is not uncommon or unexpected that patients with my type of surgery will have stumbles and minor setbacks as they learn new limits and ways of managing. I'm hearing many stories of people who are living normal lives with neobladders, so it is possible for me, too.
A Minor Setback & A Lesson
Tuesday, March 24th -
I find myself back at VMMC this morning. Last night around dinner time, the pain I was having in kidney area started getting worse. Lots of pain ending up in a bout of shivers and emptying my stomach. After hurried calls to my urologist, we loaded up and headed to Virginia Mason.
A quick assessment, blood levels, x rays showed that I was dehydrated, my fluid drains were not working properly for a time, and fluids had been backing up to my kidneys (cause of pain). Back on IV fluids overnight. I woke up pain free, feeling good, with Dr's assessment that everything looks good & they would discharge me this morning!
Lesson learned. I need to learn to dance with my new bladder. It still wants to behave like a piece of intestine - absorbing water and removing waste. So the trick is to drink lots & keep the fluid flowing! I'm trying to think of a good analogy ... kind of like having a water system that needs to be constantly running because if it stops, the pump will loose it's prime.
I find myself back at VMMC this morning. Last night around dinner time, the pain I was having in kidney area started getting worse. Lots of pain ending up in a bout of shivers and emptying my stomach. After hurried calls to my urologist, we loaded up and headed to Virginia Mason.
A quick assessment, blood levels, x rays showed that I was dehydrated, my fluid drains were not working properly for a time, and fluids had been backing up to my kidneys (cause of pain). Back on IV fluids overnight. I woke up pain free, feeling good, with Dr's assessment that everything looks good & they would discharge me this morning!
Lesson learned. I need to learn to dance with my new bladder. It still wants to behave like a piece of intestine - absorbing water and removing waste. So the trick is to drink lots & keep the fluid flowing! I'm trying to think of a good analogy ... kind of like having a water system that needs to be constantly running because if it stops, the pump will loose it's prime.
Monday, March 23, 2009
Home Again, Home Again, Jiggity Jig
Monday, March 23rd -
My wife and oldest daughter picked me up a Virgina Mason last Saturday afternoon. I noted some progress toward Spring with lots of red alder catkins and a few blossoms. At home, the first sure sign of Spring is the skunck cabbage blossoming. Sure enough, it's out!
It's great to be home! Must be a huge transition for folks that are in hospitals or other institutions for weeks or months. Sleeping in your own bed without the hourly wake up to get bp, temp, take a pill, give some blood, listen to your heart, etc is just amazing.
Seeing the small incrimental changes around the house & yard is fun; like the grass greening up & taller, daffodils in bloom, buds swelling to bursting point on the wild cherry, birds doing their goofy things to get attention. Also, this is that singular time of year when there are no dandilion flowers!
I'm feeling good. A few aches and pains as my internal food processor gets back into gear. I have my "ball and chain" as Lauril (oldest daughter) calls it. Tubes and bags for collecting fluids. She's also making fun of me for tracking just about everything to goes in and comes out. Hey, it may be important sometime!
The quick sequence of next steps:
+ Wed, March 25 - remove staples, finish Factor 9
infusions, Lauril's birthday
+ Wed, April 1st - overnight a VMMC to get tubes removed
+ Fri, April 3rd - start serious recovery efforts!
My wife and oldest daughter picked me up a Virgina Mason last Saturday afternoon. I noted some progress toward Spring with lots of red alder catkins and a few blossoms. At home, the first sure sign of Spring is the skunck cabbage blossoming. Sure enough, it's out!
It's great to be home! Must be a huge transition for folks that are in hospitals or other institutions for weeks or months. Sleeping in your own bed without the hourly wake up to get bp, temp, take a pill, give some blood, listen to your heart, etc is just amazing.
Seeing the small incrimental changes around the house & yard is fun; like the grass greening up & taller, daffodils in bloom, buds swelling to bursting point on the wild cherry, birds doing their goofy things to get attention. Also, this is that singular time of year when there are no dandilion flowers!
I'm feeling good. A few aches and pains as my internal food processor gets back into gear. I have my "ball and chain" as Lauril (oldest daughter) calls it. Tubes and bags for collecting fluids. She's also making fun of me for tracking just about everything to goes in and comes out. Hey, it may be important sometime!
The quick sequence of next steps:
+ Wed, March 25 - remove staples, finish Factor 9
infusions, Lauril's birthday
+ Wed, April 1st - overnight a VMMC to get tubes removed
+ Fri, April 3rd - start serious recovery efforts!
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