Most of us want to be special, but not in the way the OSU oncologist described it to me yesterday.
Tom and I met with the doctor to learn results of two scans I had last week and to hear his recommendation for any follow-up treatment. The good news is the CT scan and the bone scan were both clear; there were no findings of cancer still lurking. While that was a great relief, it was not comforting to hear what has the doctor perplexed and his proposed course of treatment.
The report back from a sarcoma pathologist who had double-checked slides of the mass taken from my abdomen confirmed two different, rare cancers were present in the tumor. Most prevalent was the leiomyosarcoma initially diagnosed in September. Along with it was a bone sarcoma, which rarely occurs in adults and rarely occurs in tissue that is not bone. My doctor has seen adults with a bone sarcoma in non-bone tissue, but he has never encountered that situation in combination with another sarcoma in the same tumor.
While my scans showed no lingering or recurrent cancer, his initial recommendation for preventive care is a nasty regimen of chemotherapy requiring another 15 days in the hospital. It would involve a five-day admission for intravenous chemo, to be repeated in three weeks and then again for a total of three treatments. The hospital stay is due to the drugs' harsh side effects.
Thankfully, the oncologist encourages a second opinion, especially since he hasn't treated a case like mine before. He is also consulting some of his peers, and he called last night to report another sarcoma expert advised a wait-and-watch approach for now.
My homework is to work with my health insurer to explore a second opinion from specialists at a top sarcoma center in Houston. I'd like to hear them say they have seen this before and know just how to keep it from coming back -- something that doesn't require a hospital stay for rumpus-kicking chemo.
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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.
1 comment:
I wrote yesterday -- but it doesn't look like I hit the right buttons to get the "message" to you. Look how far you have already come with this battle that you have been facing. You have beat the surgery -- and that in itself seems like a miracle to me. You have that new grandchild coming and you are strong enough to survive whatever comes your way I truly believe. Just don't give up (and I don't believe that you will). Take care of yourself first -- work can follow. You are truly loved and needed (at work, at home, and I am sure amongst friends and family). Keep your faith -- more miracles are in store for you -- even though I presume it will be a long difficult battle if you have to go through another round of chemo. YOU ARE STRONG! You have already proved that.
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