The call I've been anticipating came yesterday. My appointment to get a second opinion from the M.D. Anderson Cancer Center on follow-up treatment starts Monday. It is impressive that they responded so quickly to the request I initiated just a week ago. I just hope their physicians can agree better than those I have seen in Columbus.
The radiation oncologist I saw earlier this week recommends a course of radiation over the entire area of my abdomen where the tumor had been. That should keep it from coming back in that vicinity, he said, but would not prevent a recurrence elsewhere. Given the entrails that occupy that neighborhood, the treatment would likely produce nausea and diarrhea, he said, in addition to the usual fatigue.
Even more disturbing, the radiation oncologist said seeing two different types of sarcoma in one tumor was not unusual. It was just a matter of one stem type differentiating in two directions, he said casually, shaking my confidence in the medical oncologist who said he had never seen that occur and giving me even more reason not to jump at the medical oncologist's request to hospitalize me for heavy-duty chemo. The chemo-pushing medical oncologist had urged me to keep the appointment with the second doc this week, even though he didn't think the radiation oncologist would recommend radiation at all, since the margins around where the tumor was removed were clean.
So far, this quest for a decision regarding follow-up care has me feeling like the OSU docs are various hammers who see me as their own special nail. I hope the doctors in Houston -- where I'm told they have the only dedicated sarcoma center of any of the major cancer hospitals in the country -- do a better job of conferring with each other to reach a consensus for the best plan to keep me healthy. Even better if their plan would be to keep a watchful eye and forgo more treatment just now.
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My "lump" timeline
Sept. 6, 2008 -- Whoa! What's that?
I find a lump in my upper right abdomen while fitting the bodice of a gown I'm making to wear to Tom's Civil War re-enacting events.
Sept. 10, 2008 -- Yep, it's a lump
My primary care doc can feel it, too, but guesses it could be a hernia. Tests are scheduled.
Sept. 12, 2008 -- First of many tests
A CT scan is done, along with some blood work.
Sept. 15, 2008 -- Results confirm a mass
My primary care doc says the size is 10 by 9 by 8 centimeters. Time to confer with a surgeon, and we both like Dr. Brenda, who was my breast cancer surgeon in 1996.
Sept. 16, 2008 -- Happy birthday to me
Dr. Brenda wants more tests to make a better game plan for removing the lump.
Sept. 23, 2008 -- What kind of lump?
A CT-guided needle biopsy is performed to find out what the lump is.
Sept. 29, 2008 -- Fears confirmed
Tom and I return home from a wonderful long weekend in Gettysburg but the stress of not knowing and the unabated lump growth have suddenly combined to turn my abdomen to fire. I finally reach Dr. Brenda and she confirms that the lump is a malignant cancer, a sarcoma of connective, smooth muscle. I ask her for pain pills. She asks for more tests.
Oct. 2, 2008 -- More tests
Another scan and an MRI are done to see if the lump has moved into my chest.
Oct. 3, 2008 -- More results
Tom and I see Dr. Brenda and learn the lump has not moved into my chest (good!), but it is too big to be safely removed by surgery. Time to see an oncologist to see if we can shrink the lump.
Oct. 7, 2008 -- New doc on board
Tom and I meet with Dr. Sarwar, who says he will be consulting with a University of Michigan physician who I've already heard is a sarcoma expert. We like the game plan.
Oct. 10, 2008 -- First chemo
This one isn't so bad. Just one drug, Gemzar, is administered this session. I cut back on work a little -- no evening meetings to conserve my energy.
Oct. 17, 2008 -- Second chemo
Now we're kicking some butt. Gemzar is combined with Taxotere to give the lump a one-two punch. I enjoy a short chemo-high from all the good stuff they give you to fight off bad effects but by Sunday I'm wiped out.
Oct. 21, 2008 -- Gaining on the pain
Maybe the chemo has gotten the lump's attention. Dr. Sarwar says it's too soon to expect results but I'm ready to try getting along without the pain pills I had been taking every four hours since Sept. 29. My last pill is at 6 a.m. this morning.
Oct. 26, 2008 -- Feeling good
I have regained energy and started taking on a bit more activity, including some work outside this afternoon to clean out flower pots for the winter.
Oct. 31, 2008 -- Chemo round two
This one will be Gemzar only again; with both Gemzar and Taxotere the following week. The plan is to do at least two rounds of chemo before more scans to test for shrinkage. Maybe four full rounds before I am ready for surgery.
Nov. 21, 2008 -- Chemo round three
Surprisingly, the second round of chemo was easier to tolerate than the first. This day starts the third round and my doctor agrees with my visual assessment that the tumor is shrinking.
Dec. 1, 2008 -- Schedule change
The Thanksgiving holiday prompts a change in the round three chemo schedule. I get a reprieve on the usual Friday appointment and have my double dose instead on this Monday.
Dec. 12, 2008 -- Not the best news
Yesterday's CT scan did not provide the confirmation we had hoped that the tumor is shrinking. The doctor today said it is about the same size as when treatment began in October. But as least it isn't bigger, and blood tests for cancer activity showed improvement.
Dec. 19, 2008 -- Finishing round four
A double dose of chemo today wraps up the fourth cycle of chemo, just in time for a breather before the holidays.
Jan. 9, 2009 -- Chemo cycle five, with a twist
I was ready for a new round of chemo the day after New Year's but the doctor's office didn't have enough other willing patients that Friday to warrant bringing the doctor in, so the fifth cycle was delayed to today. Rather than further postpone the attack, the doctor made today a double-dose day, with the single dose next Friday.
Jan. 14, 2009 -- PET scan
I think I've had every kind of scan there is now; this one is to look inside the tumor at cancer activity, or lack there of.
Jan. 16, 2009 -- Final chemo
Today's single dose ends up being my last. This week's scan showed a lot of the tumor is dead tissue but it is still active and growing at the top. Challenge now is to find the right surgeon to take out the tumor.
Feb. 12, 2009 -- Cut it out!
This is the date for surgery at OSU Medical Center to remove this tumor, now too massive to call just a lump. It will be more like delivering a demon baby.
Feb. 13, 2009 -- It's finally gone
The operation was a success. In addition to taking out about 10 pounds of tumor, the surgeon also removed pieces of my pancreas, stomach and intestines but didn't have to take out a kidney, as he thought he might. I have two drains in my side and a tube through my nose to my stomach, along with an IV-tube in my neck, but knowing the tumor is gone is a great relief.
Feb. 20, 2009 -- Going home
A week and a day after surgery, I am heading home. It's nice to get in my own bed but I still have a long recovery ahead.
March 3, 2009 -- More progress
I leave a follow-up visit to the surgeon with my staples and the last drain removed. He says I am doing great; that some people who had such extensive surgery would still be in the hospital.
March 17, 2009 -- Looking ahead
Tom and I meet with a new oncologist today. His job will be to guard against recurrences and help me fight back if they occur. He seems appropriately thorough and up for the task.
I find a lump in my upper right abdomen while fitting the bodice of a gown I'm making to wear to Tom's Civil War re-enacting events.
Sept. 10, 2008 -- Yep, it's a lump
My primary care doc can feel it, too, but guesses it could be a hernia. Tests are scheduled.
Sept. 12, 2008 -- First of many tests
A CT scan is done, along with some blood work.
Sept. 15, 2008 -- Results confirm a mass
My primary care doc says the size is 10 by 9 by 8 centimeters. Time to confer with a surgeon, and we both like Dr. Brenda, who was my breast cancer surgeon in 1996.
Sept. 16, 2008 -- Happy birthday to me
Dr. Brenda wants more tests to make a better game plan for removing the lump.
Sept. 23, 2008 -- What kind of lump?
A CT-guided needle biopsy is performed to find out what the lump is.
Sept. 29, 2008 -- Fears confirmed
Tom and I return home from a wonderful long weekend in Gettysburg but the stress of not knowing and the unabated lump growth have suddenly combined to turn my abdomen to fire. I finally reach Dr. Brenda and she confirms that the lump is a malignant cancer, a sarcoma of connective, smooth muscle. I ask her for pain pills. She asks for more tests.
Oct. 2, 2008 -- More tests
Another scan and an MRI are done to see if the lump has moved into my chest.
Oct. 3, 2008 -- More results
Tom and I see Dr. Brenda and learn the lump has not moved into my chest (good!), but it is too big to be safely removed by surgery. Time to see an oncologist to see if we can shrink the lump.
Oct. 7, 2008 -- New doc on board
Tom and I meet with Dr. Sarwar, who says he will be consulting with a University of Michigan physician who I've already heard is a sarcoma expert. We like the game plan.
Oct. 10, 2008 -- First chemo
This one isn't so bad. Just one drug, Gemzar, is administered this session. I cut back on work a little -- no evening meetings to conserve my energy.
Oct. 17, 2008 -- Second chemo
Now we're kicking some butt. Gemzar is combined with Taxotere to give the lump a one-two punch. I enjoy a short chemo-high from all the good stuff they give you to fight off bad effects but by Sunday I'm wiped out.
Oct. 21, 2008 -- Gaining on the pain
Maybe the chemo has gotten the lump's attention. Dr. Sarwar says it's too soon to expect results but I'm ready to try getting along without the pain pills I had been taking every four hours since Sept. 29. My last pill is at 6 a.m. this morning.
Oct. 26, 2008 -- Feeling good
I have regained energy and started taking on a bit more activity, including some work outside this afternoon to clean out flower pots for the winter.
Oct. 31, 2008 -- Chemo round two
This one will be Gemzar only again; with both Gemzar and Taxotere the following week. The plan is to do at least two rounds of chemo before more scans to test for shrinkage. Maybe four full rounds before I am ready for surgery.
Nov. 21, 2008 -- Chemo round three
Surprisingly, the second round of chemo was easier to tolerate than the first. This day starts the third round and my doctor agrees with my visual assessment that the tumor is shrinking.
Dec. 1, 2008 -- Schedule change
The Thanksgiving holiday prompts a change in the round three chemo schedule. I get a reprieve on the usual Friday appointment and have my double dose instead on this Monday.
Dec. 12, 2008 -- Not the best news
Yesterday's CT scan did not provide the confirmation we had hoped that the tumor is shrinking. The doctor today said it is about the same size as when treatment began in October. But as least it isn't bigger, and blood tests for cancer activity showed improvement.
Dec. 19, 2008 -- Finishing round four
A double dose of chemo today wraps up the fourth cycle of chemo, just in time for a breather before the holidays.
Jan. 9, 2009 -- Chemo cycle five, with a twist
I was ready for a new round of chemo the day after New Year's but the doctor's office didn't have enough other willing patients that Friday to warrant bringing the doctor in, so the fifth cycle was delayed to today. Rather than further postpone the attack, the doctor made today a double-dose day, with the single dose next Friday.
Jan. 14, 2009 -- PET scan
I think I've had every kind of scan there is now; this one is to look inside the tumor at cancer activity, or lack there of.
Jan. 16, 2009 -- Final chemo
Today's single dose ends up being my last. This week's scan showed a lot of the tumor is dead tissue but it is still active and growing at the top. Challenge now is to find the right surgeon to take out the tumor.
Feb. 12, 2009 -- Cut it out!
This is the date for surgery at OSU Medical Center to remove this tumor, now too massive to call just a lump. It will be more like delivering a demon baby.
Feb. 13, 2009 -- It's finally gone
The operation was a success. In addition to taking out about 10 pounds of tumor, the surgeon also removed pieces of my pancreas, stomach and intestines but didn't have to take out a kidney, as he thought he might. I have two drains in my side and a tube through my nose to my stomach, along with an IV-tube in my neck, but knowing the tumor is gone is a great relief.
Feb. 20, 2009 -- Going home
A week and a day after surgery, I am heading home. It's nice to get in my own bed but I still have a long recovery ahead.
March 3, 2009 -- More progress
I leave a follow-up visit to the surgeon with my staples and the last drain removed. He says I am doing great; that some people who had such extensive surgery would still be in the hospital.
March 17, 2009 -- Looking ahead
Tom and I meet with a new oncologist today. His job will be to guard against recurrences and help me fight back if they occur. He seems appropriately thorough and up for the task.
3 comments:
I am thrilled to see you getting the insight from the docs in Houston! Know that you will be wrapped in prayer on the way.
Once again, and always, you are in my prayers Mary. Another opinion can never hurt!
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