I think it has now been over 48 hours since my surgery. It was expected to take 45 minutes to an hour though it *might* have to be done as an open surgery instead of laparoscopic. In the end the surgery took nearly 3 hours, had to be done through an incision about 5-6" long, and left me with 4 fewer inches of the transverse colon.
Apparently after entering with the scope the surgeon could not find the tumor. So he had to open me up to go huntin'. Even opened it was hard to see the tumor. He could feel it, though, and recognize it. Rather than being 1x3 centimeters in largeness it's 2 1/2 cms in diameter which is more than double what he was expecting! The tumor was also entangled with some significant vessels heading to the transverse colon and was growing through it too (assuming I am remembered this right!)
I was finally taken to the recovery area, then up to my room for the duration of my stay.
Then things started to get a bit nerve wracking. My temperature went up (nearly 103!), my blood pressure went way down (mine is usually around 110ish/65ish to about 97/46. My pulse rate went up (currently about 125) and my oxygen sats went down (I keep pushing the edge just close enough that I am stuck with the cannula for a few hours, then off, the back on... that tickles the inside of ones nose SO much!!! Also my white blood cell count was elevated but today is now the almost normal(after 3? 4? MEGA doses of antibitics.).
This morning my doctor told me that yesterday was really worried. My body was just screwed up! Now they've done additional xrays of my lungs to rule out pneumonia, a few more sets of blood work so they can see trends in my blood work. I;m still crazy exhausted, practically narcoleptic, and highly confusable.
Oh and despite the fact that the final pathology reports are still out there, he has all but crossed-his-heart-hop-to died that the tumor was in fact a GIST. Good news is that they can respond easily to treatments. Bad news is that they're hard to find and usually arent found until they're quite large. Mine is near the low end of middle size.
Michael and I each received a Father's Blessing on Sunday which was very clear that there are things I still have to do. It may be a few week still they've decided on which protocol will be the best one to treat this situation.
I hope that at least cleared things up a bit. I am typing with the pulse-ox monitor and at least 80% asleep. WIll update again when there;s something new to add in or answer question.
Love you
<3 <3 <3
Friday, September 24, 2010
Monday, September 20, 2010
Cheers! (And other surgery details)
Today was my appointment with my surgeon to discuss my abdominal mass. Which just sounds like a polite word for candy-gut, but really isn't.
He gave me a few more details from the CT report. The tumor is just off the transverse colon. The tricky thing is that if the tumor is mixed up in the colon they may have to cut into it some. And if the tumor is mixed up with any major blood flow to a section of the colon they may have to cut out a section. We'd rather avoid those things... not that there's anything we could do to change it... but still! My colon has enough trouble without cutting into it!
So I have to do a bowel prep (same as colonoscopy prep) before the surgery just in case. It involves drinking one of those bottles of Pure Evil, sitting in the bathroom for six hours, then drinking the other one and trying to keep them down long enough to let it do its job. I have serious opinions on the subject, though I don't think I could put it any more clearly than Dave Barry.
Tomorrow is "prep day". I have an appointment at the hospital to have labs and tests run, then I'm hoping to run to Build-a-Bear (cause a sweet friend sent me a gift card to build myself a surgery buddy and I'm SO excited about it!!! Love you!!!), then do the liquid roto rooter. That will take up all day tomorrow. I'm on all clear fluids tomorrow until they say I'm not any more.
Wednesday is "surgery day". Tomorrow evening they will call to tell me what time to arrive. Since I've already pre-registered by phone, filled out pre-admittance online, and will have been pre-poked and prodded in the lab it shouldn't take so long to get into surgery. The surgery will be done at Utah Valley Hospital (UVRMC). It is being handled as an admittance procedure rather than out-patient. There is a *chance* that I might make it home wednesday, but most likely I'll be kept overnight at least.
There are several factors for when I'll get to leave and none of them can be answered until I'm not conscious (at least I'd better not be!). Hopefully the procedure will be laparoscopic, but depending on size, exact location, complexity, etc. they are going to be prepared to do it as an open surgery which will be a lot longer recovery and hospital stay. And of course if they start fiddling around with other organs that would complicate matters as well.
It will likely be two to three days before we hear the pathology report. Then they'll know what happened or is happening to cause such a nuisance. At that point they'll discuss management of the cause which will hopefully be to do the one surgery and be done with it.
There are many people who have offered to help us out. I really appreciate it! I fully intend to be unconscious for the majority of the time when help would be useful, so Michael is the one to talk to about that. I particularly appreciate the love and prayers of so many. It is a miracle to have found this in the first place and getting it gone will be a big relief.
When we have more information we'll keep people updated. We're hoping to settle down to be happy, boring, healthy people in no time at all.
He gave me a few more details from the CT report. The tumor is just off the transverse colon. The tricky thing is that if the tumor is mixed up in the colon they may have to cut into it some. And if the tumor is mixed up with any major blood flow to a section of the colon they may have to cut out a section. We'd rather avoid those things... not that there's anything we could do to change it... but still! My colon has enough trouble without cutting into it!
Tomorrow is "prep day". I have an appointment at the hospital to have labs and tests run, then I'm hoping to run to Build-a-Bear (cause a sweet friend sent me a gift card to build myself a surgery buddy and I'm SO excited about it!!! Love you!!!), then do the liquid roto rooter. That will take up all day tomorrow. I'm on all clear fluids tomorrow until they say I'm not any more.
Wednesday is "surgery day". Tomorrow evening they will call to tell me what time to arrive. Since I've already pre-registered by phone, filled out pre-admittance online, and will have been pre-poked and prodded in the lab it shouldn't take so long to get into surgery. The surgery will be done at Utah Valley Hospital (UVRMC). It is being handled as an admittance procedure rather than out-patient. There is a *chance* that I might make it home wednesday, but most likely I'll be kept overnight at least.
There are several factors for when I'll get to leave and none of them can be answered until I'm not conscious (at least I'd better not be!). Hopefully the procedure will be laparoscopic, but depending on size, exact location, complexity, etc. they are going to be prepared to do it as an open surgery which will be a lot longer recovery and hospital stay. And of course if they start fiddling around with other organs that would complicate matters as well.
It will likely be two to three days before we hear the pathology report. Then they'll know what happened or is happening to cause such a nuisance. At that point they'll discuss management of the cause which will hopefully be to do the one surgery and be done with it.
There are many people who have offered to help us out. I really appreciate it! I fully intend to be unconscious for the majority of the time when help would be useful, so Michael is the one to talk to about that. I particularly appreciate the love and prayers of so many. It is a miracle to have found this in the first place and getting it gone will be a big relief.
When we have more information we'll keep people updated. We're hoping to settle down to be happy, boring, healthy people in no time at all.
Monday, September 13, 2010
Just a tad nervous.
Many of you will already have heard all of this by now. Feel free to skim read or just skip it altogether. I just didn't want anyone to have an excuse to have not heard the latest.
I've been feeling "under the weather" for a month or so lately. Not really specific symptoms of anything, just nauseous, achy, elevated temperature, right side flank pain, etc. I finally went to see my doctor last week. He ran blood tests, urine tests, etc. Everything came back normal! Except some blood in the urine. So he scheduled me for a CT scan this morning.
Usually when they suspect kidney stones (which I'm a bit of a pro at) they do a KUB (an xray of the kidney, ureters, and bladder). So I was a little surprised to jump straight to the CT scan. But I've been feeling so "off" that I was willing to do the more detailed study. I've had several abdominal CTs in the past pertaining to kidney stones so I knew what to expect. After the three runs through the machine the technician said she could see a small stone, but wanted to run the IV contrast to rule out any non-calcified causes for the pain and bleeding. This is the first time they've done contrast.
I expected to get a call back from the nurse tomorrow or the next day or so, to tell me that I have a small stone and deal with it. I was surprised then to get a phone call from the doctor's office within an hour of the scan. I was even more surprised that it was the actual doctor himself! He told me what I knew: "they see a small stone in there, still in the kidney. It could be causing the bleeding so we'll just keep an eye on it." Fine. That's what I expected until he pulled out the "but....."
The radiologist compared my new CT to the last one they'd done for the same reason back in 2008 and they found a lump. A tumor. It is apparently located by my colon, though not involved with the colon (meaning that the colon hasn't caused the tumor, nor is the tumor causing complications in the colon). It is oblong, measuring at 1 centimeter by 3 centimeters. There is no way to know whether it's cancerous or benign until it has been removed and studied.
I held on the line while I was passed off to the nurse so she could make arrangements for me to see my general surgeon -- the same one who removed my appendix. I will see him next week for a pre-op appointment and to schedule the surgery. The surgery should be laparoscopic and I assume it will be an outpatient procedure. I expect it will be a couple days after the surgery before I hear the results.
The doctor suggested three possibilities for what the tumor could be:
1) Carcinoid tumor.
This tumor can be benign or malignant. In about 10% of cases it secretes hormones which can make your body seem really "off" (sound familiar?). In order for the hormones to get into the bloodstream to cause changes, though, the tumor has to have metastasized to the liver. This is a very slow growing tumor and is often missed. The cancerous version does not respond well to treatments, but can sometimes be removed if caught early enough.
2) Lymphoma.
This would be bad. It is cancer, of course. It can be treated. There are nearly 50 different versions of lymphoma and details partly depend on the version.
3) Desmoid tumor.
These tumors are malignant. They can be very difficult to get rid of, however, and can cause a lot of damage to organs. In many cases they recur. It can be treated with surgeries, lots of watching, and perhaps radiation/chemo.
Personally I prefer option 4 -- a short stack of dimes. Or perhaps a small Vienna sausage? I mean, my body does strange things. Why not be unusual in my tumor growth too?!
I am nervous, of course. However, I have a strong feeling of peace and know that I've been well taken care of for this to even have been discovered. I know that somehow this will work out just fine. I just really don't like waiting to find out how!
So now you know. I'm sure I'll update when I have more information. I appreciate prayers I know so many of you have been saying on my behalf. We just gotta get through this next bit.
I've been feeling "under the weather" for a month or so lately. Not really specific symptoms of anything, just nauseous, achy, elevated temperature, right side flank pain, etc. I finally went to see my doctor last week. He ran blood tests, urine tests, etc. Everything came back normal! Except some blood in the urine. So he scheduled me for a CT scan this morning.
Usually when they suspect kidney stones (which I'm a bit of a pro at) they do a KUB (an xray of the kidney, ureters, and bladder). So I was a little surprised to jump straight to the CT scan. But I've been feeling so "off" that I was willing to do the more detailed study. I've had several abdominal CTs in the past pertaining to kidney stones so I knew what to expect. After the three runs through the machine the technician said she could see a small stone, but wanted to run the IV contrast to rule out any non-calcified causes for the pain and bleeding. This is the first time they've done contrast.
I expected to get a call back from the nurse tomorrow or the next day or so, to tell me that I have a small stone and deal with it. I was surprised then to get a phone call from the doctor's office within an hour of the scan. I was even more surprised that it was the actual doctor himself! He told me what I knew: "they see a small stone in there, still in the kidney. It could be causing the bleeding so we'll just keep an eye on it." Fine. That's what I expected until he pulled out the "but....."
The radiologist compared my new CT to the last one they'd done for the same reason back in 2008 and they found a lump. A tumor. It is apparently located by my colon, though not involved with the colon (meaning that the colon hasn't caused the tumor, nor is the tumor causing complications in the colon). It is oblong, measuring at 1 centimeter by 3 centimeters. There is no way to know whether it's cancerous or benign until it has been removed and studied.
I held on the line while I was passed off to the nurse so she could make arrangements for me to see my general surgeon -- the same one who removed my appendix. I will see him next week for a pre-op appointment and to schedule the surgery. The surgery should be laparoscopic and I assume it will be an outpatient procedure. I expect it will be a couple days after the surgery before I hear the results.
The doctor suggested three possibilities for what the tumor could be:
1) Carcinoid tumor.
This tumor can be benign or malignant. In about 10% of cases it secretes hormones which can make your body seem really "off" (sound familiar?). In order for the hormones to get into the bloodstream to cause changes, though, the tumor has to have metastasized to the liver. This is a very slow growing tumor and is often missed. The cancerous version does not respond well to treatments, but can sometimes be removed if caught early enough.
2) Lymphoma.
This would be bad. It is cancer, of course. It can be treated. There are nearly 50 different versions of lymphoma and details partly depend on the version.
3) Desmoid tumor.
These tumors are malignant. They can be very difficult to get rid of, however, and can cause a lot of damage to organs. In many cases they recur. It can be treated with surgeries, lots of watching, and perhaps radiation/chemo.
Personally I prefer option 4 -- a short stack of dimes. Or perhaps a small Vienna sausage? I mean, my body does strange things. Why not be unusual in my tumor growth too?!
I am nervous, of course. However, I have a strong feeling of peace and know that I've been well taken care of for this to even have been discovered. I know that somehow this will work out just fine. I just really don't like waiting to find out how!
So now you know. I'm sure I'll update when I have more information. I appreciate prayers I know so many of you have been saying on my behalf. We just gotta get through this next bit.
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