Greg Hewlett passed away on January 17th after nearly eight years of battling colon cancer. While we grieve his loss, we are comforted to know that he is with his Lord.
If you would like to leave your thoughts on Greg, please see this thread.
If you would like to make a charitable donation in Greg's honor, please see this thread.
The Struggle Has Ended
Thursday, July 26, 2007
Cancer is mean
Today did not go so well. The scans showed two relatively large lymph nodes by the trachea "Y". The cancer is spreading. These were normal just three months ago. Due to the quick growth and size, Dr. Eng said they are inoperable. I'd like to confirm with the surgeon, but surgery does indeed seem difficult given their location and instability. She wants to move right away to aggressive chemo to fight them. I may get a biopsy or PET scan back here in Dallas for more confirmation, but she and Dr. Rodriguez were pretty sure what we're dealing with. I'm going to make some calls tomorrow to better understand things. But it doesn't look good.
There was also a tiny lung nodule, like the other six I've had removed. By itself, it is not a big problem, and could be resected like the others were. That is not the focus of attention right now.
So how am I doing? Let me illustrate to you my mindset. After meeting Dr. Eng, I spoke with Christine on the phone (she stayed in Dallas due to her condition) and decided that I really wanted to go back today to be with her, even though she thought maybe I shouldn't drive after that greuling day. I walked out the hospital door, picked the car up at the valet, and started driving. And driving. I drove about a fifth of the way to Dallas before I realized I had left my suitcase, laptop, and everything else back at the hotel. I had to turn around and go get it all. Then drive the same route again, only this time in heavy traffic, to creep back towards Dallas. Frustrating.
There was also a tiny lung nodule, like the other six I've had removed. By itself, it is not a big problem, and could be resected like the others were. That is not the focus of attention right now.
So how am I doing? Let me illustrate to you my mindset. After meeting Dr. Eng, I spoke with Christine on the phone (she stayed in Dallas due to her condition) and decided that I really wanted to go back today to be with her, even though she thought maybe I shouldn't drive after that greuling day. I walked out the hospital door, picked the car up at the valet, and started driving. And driving. I drove about a fifth of the way to Dallas before I realized I had left my suitcase, laptop, and everything else back at the hotel. I had to turn around and go get it all. Then drive the same route again, only this time in heavy traffic, to creep back towards Dallas. Frustrating.
Tuesday, July 24, 2007
Trouble with scrubs
The CT scan, as usual, leaves me in poor shape for gastrointestinal reasons I will not go into here. Today, they said I didn't need to change clothes. I could keep the scrubs top, because I am staying at the Rotary House, a hotel connected to and owned by the hospital. I could just return it at the hotel.
This top is a loose fitting shirt they give you for the scan, but is also like those worn by surgeons and other folks at the top of the complex political hierarchy of MD Anderson staff.
Well, it so happens that the Rotary House is in the walking path from the hospital to the staff parking and public transportation. So as I milled about today in jeans with my scrubs top, I was seen by hundreds of hospital employees streaming by. Normally, I am pretty much invisible to them. But today, I was getting eyed over a bit. As the day went on, I noticed it a bit more. The looks were more like awkward glares than curious glances. I ignored it, thinking that I was just being self-conscious with impersonator guilt. Or maybe they thought I was shop-lifting their clothing.
It all became clear in the parking garage tonight. A nurse, whose age and step indicated high status and experience, was walking towards me in a direction closer than comfortable. She reached out, pinched my leg, and reprimanded me "Tsk, tsk, Doctor, you know better than to be wearing jeans!"
This top is a loose fitting shirt they give you for the scan, but is also like those worn by surgeons and other folks at the top of the complex political hierarchy of MD Anderson staff.
Well, it so happens that the Rotary House is in the walking path from the hospital to the staff parking and public transportation. So as I milled about today in jeans with my scrubs top, I was seen by hundreds of hospital employees streaming by. Normally, I am pretty much invisible to them. But today, I was getting eyed over a bit. As the day went on, I noticed it a bit more. The looks were more like awkward glares than curious glances. I ignored it, thinking that I was just being self-conscious with impersonator guilt. Or maybe they thought I was shop-lifting their clothing.
It all became clear in the parking garage tonight. A nurse, whose age and step indicated high status and experience, was walking towards me in a direction closer than comfortable. She reached out, pinched my leg, and reprimanded me "Tsk, tsk, Doctor, you know better than to be wearing jeans!"
The good side of brain tumors
Cancer can be a funny thing. I got news last week of a brain tumor and its the best news I've heard all year. Let me explain (don't be alarmed, it is not malignant.)
I have had a tumultuous three months since my last appointment at MD Anderson. I had left that appointment looking forward to a three month doctor-free, news-free, worry-free break.
As the weeks went by, my fatigue did not get better. I have had a general feeling of malaise and I had expected to begin returning to full health. Upon my good wife's pleading, I reluctantly went to the doctor to discuss the fatigue. This led to some blood work that revealed a high calcium level. This is very uncommon - the body does a great job of keeping calcium levels normal. It could only be aa few things, one of which was not what I wanted to hear. High calcium is often a sign when someone's cancer spreads to the bones, which mine can do. The tumors can dissolve the calcium in the bones. After a long week, which included a full-body bone scan, I found out that there is not metastatic bone activity, but that my parathyroid is not regulating it correctly - a problem, but not a big problem.
Two weeks later, the doctors office calls and says that in blood work I had done during that scare, four hormone levels were far out of range: from 10x too low to 10x too high (not sure why they didn't call for two weeks!). This pointed to the pituitary gland - in the brain. Again, my heart sunk. It sunk down into my stomach, and down through my radiated, butchered intenstines, and I think it didn't stop until it was somewhere in what's left of my colon.
They wanted to do a brain MRI. All indications pointed to something physical going on up there between my eyes. It might explain the strength problems and malaise. But the possibilities were not many. The best it could be is a benign tumor in the brain - a "pituitary adenoma". The worst would be that the colon cancer had spread to the brain, as it does in 10% of stage IV colon cancer patients. The benign tumor could be removed surgically. Brain surgery. I can do that. No problem. Bring it on. Just don't say the C word.
Again, the long days. I had a brain MRI. I saw the technicians behind the glass intently pointing at the screen and talking (but they could tell me nothing). And for two days, a chill whenever the cell phone rang. The call came. The MRI clearly showed that I had the benign tumor in my brain. Relief and joy. Funny thing.
The news got better. The endocrinologist is going to attempt to treat it with medication instead of surgery. I didn't know that was even an option. A little pill two times a week. And it just might be the ticket to bring back my strength. I have had more than one occasion in this journey when things seem so dire, and the scope of the possible spans from bad to worse. And then, I find out they are better than what I could imagine. Eph 3:20-21 surely refers to more than mere MRI results, but I know it does not mean any less!
So here I am back in Houston after my three month "break". Two other times in the past four years I have had a three-month break and the break ended with new "spots" and more treatment. I get a full-torso CT scan today and meet with Dr. Eng Thursday. I am weary, but at rest. (Mt 11:28)
I have had a tumultuous three months since my last appointment at MD Anderson. I had left that appointment looking forward to a three month doctor-free, news-free, worry-free break.
As the weeks went by, my fatigue did not get better. I have had a general feeling of malaise and I had expected to begin returning to full health. Upon my good wife's pleading, I reluctantly went to the doctor to discuss the fatigue. This led to some blood work that revealed a high calcium level. This is very uncommon - the body does a great job of keeping calcium levels normal. It could only be aa few things, one of which was not what I wanted to hear. High calcium is often a sign when someone's cancer spreads to the bones, which mine can do. The tumors can dissolve the calcium in the bones. After a long week, which included a full-body bone scan, I found out that there is not metastatic bone activity, but that my parathyroid is not regulating it correctly - a problem, but not a big problem.
Two weeks later, the doctors office calls and says that in blood work I had done during that scare, four hormone levels were far out of range: from 10x too low to 10x too high (not sure why they didn't call for two weeks!). This pointed to the pituitary gland - in the brain. Again, my heart sunk. It sunk down into my stomach, and down through my radiated, butchered intenstines, and I think it didn't stop until it was somewhere in what's left of my colon.
They wanted to do a brain MRI. All indications pointed to something physical going on up there between my eyes. It might explain the strength problems and malaise. But the possibilities were not many. The best it could be is a benign tumor in the brain - a "pituitary adenoma". The worst would be that the colon cancer had spread to the brain, as it does in 10% of stage IV colon cancer patients. The benign tumor could be removed surgically. Brain surgery. I can do that. No problem. Bring it on. Just don't say the C word.
Again, the long days. I had a brain MRI. I saw the technicians behind the glass intently pointing at the screen and talking (but they could tell me nothing). And for two days, a chill whenever the cell phone rang. The call came. The MRI clearly showed that I had the benign tumor in my brain. Relief and joy. Funny thing.
The news got better. The endocrinologist is going to attempt to treat it with medication instead of surgery. I didn't know that was even an option. A little pill two times a week. And it just might be the ticket to bring back my strength. I have had more than one occasion in this journey when things seem so dire, and the scope of the possible spans from bad to worse. And then, I find out they are better than what I could imagine. Eph 3:20-21 surely refers to more than mere MRI results, but I know it does not mean any less!
So here I am back in Houston after my three month "break". Two other times in the past four years I have had a three-month break and the break ended with new "spots" and more treatment. I get a full-torso CT scan today and meet with Dr. Eng Thursday. I am weary, but at rest. (Mt 11:28)
Wednesday, July 11, 2007
Medical Summary - updated July 23 2007
I have stage IV colon cancer, which means that there is a primary tumor in the colon and it has spread via the bloodstream to another place. In my case, at the time of diagnosis, there was a very large tumor on my liver. In addition, there was possible cancerous activity in the local lymph nodes and two small places in the lungs. Neither of these latter two problems were certain (although later proved to be cancer and were removed).
What I've done so far:
(1) To start things off (June 2003), I had almost three rounds of chemo. Each round consists of a 21 day cycle of chemo. Day one, I take intravenous CPT-11 (ironotecan). Days 1-14, I take Xeloda, the oral form of 5-FU, in the morning and in the evening. These three rounds shrunk the liver tumor almost 50% and made the lung spots go away. This was very encouraging, as this chemo is effective in only 50% of colon cancer patients.
(2) The third round was aborted due to colon obstruction at the tumor site. I spent a week in the hospital in Dallas before it opened just enough to get by for a few weeks.
(3) Then I had surgery to remove the primary tumor. Dr. Rogriguez, surgeon at MD Anderson Cancer Center (MDACC) performed the helicolectomy, a removal of the half of the colon containing the tumor. In addition, he removed the surrounding lymph nodes, a few of which turned out to be cancerous. While I was opened up, he also looked around for cancer that had not shown up on the radiology tests. He found no other visible cancer. The removed tumor was analyzed and found to be only 20% viable due to the effectiveness of the chemo.
(4) After recovering from surgery, I began chemo again. One day shy of having completed two more rounds of chemo, I developed clostridium difficile bacteria in my bowels. This was treated during a three-day stay at a local Richardson hopsital.
(5) After complications due to the onset of c-diff bacteria, I was delayed a few weeks. Dr. Hoff decided it was about time to do another round of radiology tests and we received the results on Dec 8. To everyone's surprise the tumor had shrunk remarkably and it was determined the next week by the surgeon, Dr Vauthey, that I was ready for surgical resection. MD Anderson's approach to liver resection for colon cancer is described in the article.
(6) The surgery was performed on Dec 22 and I spent Christmas in the hospital. I had quite a group with me during this time. According to the surgeon, it went "perfectly": the tumor was removed in one piece (all the right lobe and part of the left), there was no need to remove any of the diaphragm, and most importantly, there was no cancer found beyond that which was taken out. Christmas, it seems, came anyway. The recovery is rough, as I had 76% of my liver removed. But I am steadily regaining strength as it regenerates.
(7) Having gone through surgical removal of the liver tumor, more chemo (possibly with a different drug) was necessary for good measure to assure ourselves that all remnants of the cancer are gone. I completed this round in spring of 2004.
(8) At the end of spring, they noticed a small nodule in the pelvic region. They tried to biopsy it via a colonoscopy, and the samples taken were negative for cancer. Three months later, it showed growth, so they did an external biopsy, which proved positive for cancer. They also noticed that this nodule may have been on the original scans back in 2003. I think it was there all along.
(9) They decided to do a different type of chemo, which is now the frontline approach (it wasn't FDA approved when I began all my treatments). This protocol is called FOLFOX with Avastin. After several rounds of this, the nodule shrunk, so they were willing to go after it with surgery.
(10) In February of 2005, I had major surgery to get this nodule taken out. They sucessfully got it, and saw no remaining cancer anywhere in my belly when they were in there. The surgery was miraculous in that the side effects were relatively few, even though many bad side effects were quite possible and even expected - including removal of my bladder or rectum. None of that was necessary!
(11) There was a very small (less than 1mm) margin of non-cancerous tissue around the edge of the the removed blob of tissue. This means a good chance there are still microscopic cancer cells left. So they decided to do 4 rounds of chemo (FOLFOX-Avastin), then radiation, then a final 4 rounds of chemo.
(12) The radiation was completed July 5, 2005. I did the radiation in Houston at MD Anderson.
(13) After radiation, they wanted to do some more chemo for good measure. So I did four rounds of FOLFOX-Avastin, finishing in September 2005.
(14) In October 2005, the CT scans were clear(!)
(15) Jan 2006 I had my first 3-month checkup, which inluded a full torso CT scan. There were a couple of spots that showed up on the scan on my lungs. These had been there before but had disappeared (with chemo?). They were too small to know what they were. Dr Hoff suggested that I return in 8 weeks for another scan of the lungs.
(16) March 23,2006 a couple days after the scan I met with my new oncologist, Dr. Cathy Eng (Dr. Hoff moved back to Brazil, his home country). Unfortunately, the scans showed significant growth of the spots and several others as well. The largest is 11mm, just big enough to biopsy. So we are scheduling a biopsy - probably around April 17.
(17) April 7, 2006. The biopsy was positive for cancer. Details here. I am now taking a four rounds of irinotecan + intravenous 5fu, fourteen days per round. The story behind this protocol decision is here. The hope is to shrink and kill. I'm hoping surgery will become an option to remove the lung mets.
(18) May 22, 2006. Due to low white blood cell count and intestinal pain, probably from the chemo iritating them, my doctor postponed round three of chemo for one week.
(19) Nov 11, 2006. I finished my last round of chemotherapy. All these years of chemo is really beating me down. I requested a consult with a lung surgeon. To my surprise, he told me I was a good candidate for surgery. (details) Lung surgery to remove the mets in my left lung is scheduled for Jan 5, 2006.
(20) Jan 5, 2007. Successful lung surgery, left lung. I had thoracotomy with two wedge resections to take out two mets in my left lung. The surgeon expects to do a similar operation on my right lung in a couple months. You can follow my surgery by looking at blog entries from January 2007.
(21) March 23, 2007. Successful lung surgery, right lung. I had another thoracotomy, this time with four wedge resections to take out mets. Surgery details are in blog entries from March 2007.
(22) April 19, 2007. Met with my surgeon, and my clinical oncologist, Dr. Eng, at MD Anderson. No evidence of disease, no treatment planned. Return July 24 for CT scans. This feels like the first remission, although it actually is the third. The first was tentative where there was something on the CT scan, but the biopsy was negative for cancer, but was done "blindly". The second remission was with the knowledge that there were (likely) lung mets that had shrunk to not be visible on scans. This time - no trouble spots.
All of this is done under the care of a team of doctors at MD Anderson Cancer Center (MDACC) in Houston, TX.
What I've done so far:
(1) To start things off (June 2003), I had almost three rounds of chemo. Each round consists of a 21 day cycle of chemo. Day one, I take intravenous CPT-11 (ironotecan). Days 1-14, I take Xeloda, the oral form of 5-FU, in the morning and in the evening. These three rounds shrunk the liver tumor almost 50% and made the lung spots go away. This was very encouraging, as this chemo is effective in only 50% of colon cancer patients.
(2) The third round was aborted due to colon obstruction at the tumor site. I spent a week in the hospital in Dallas before it opened just enough to get by for a few weeks.
(3) Then I had surgery to remove the primary tumor. Dr. Rogriguez, surgeon at MD Anderson Cancer Center (MDACC) performed the helicolectomy, a removal of the half of the colon containing the tumor. In addition, he removed the surrounding lymph nodes, a few of which turned out to be cancerous. While I was opened up, he also looked around for cancer that had not shown up on the radiology tests. He found no other visible cancer. The removed tumor was analyzed and found to be only 20% viable due to the effectiveness of the chemo.
(4) After recovering from surgery, I began chemo again. One day shy of having completed two more rounds of chemo, I developed clostridium difficile bacteria in my bowels. This was treated during a three-day stay at a local Richardson hopsital.
(5) After complications due to the onset of c-diff bacteria, I was delayed a few weeks. Dr. Hoff decided it was about time to do another round of radiology tests and we received the results on Dec 8. To everyone's surprise the tumor had shrunk remarkably and it was determined the next week by the surgeon, Dr Vauthey, that I was ready for surgical resection. MD Anderson's approach to liver resection for colon cancer is described in the article.
(6) The surgery was performed on Dec 22 and I spent Christmas in the hospital. I had quite a group with me during this time. According to the surgeon, it went "perfectly": the tumor was removed in one piece (all the right lobe and part of the left), there was no need to remove any of the diaphragm, and most importantly, there was no cancer found beyond that which was taken out. Christmas, it seems, came anyway. The recovery is rough, as I had 76% of my liver removed. But I am steadily regaining strength as it regenerates.
(7) Having gone through surgical removal of the liver tumor, more chemo (possibly with a different drug) was necessary for good measure to assure ourselves that all remnants of the cancer are gone. I completed this round in spring of 2004.
(8) At the end of spring, they noticed a small nodule in the pelvic region. They tried to biopsy it via a colonoscopy, and the samples taken were negative for cancer. Three months later, it showed growth, so they did an external biopsy, which proved positive for cancer. They also noticed that this nodule may have been on the original scans back in 2003. I think it was there all along.
(9) They decided to do a different type of chemo, which is now the frontline approach (it wasn't FDA approved when I began all my treatments). This protocol is called FOLFOX with Avastin. After several rounds of this, the nodule shrunk, so they were willing to go after it with surgery.
(10) In February of 2005, I had major surgery to get this nodule taken out. They sucessfully got it, and saw no remaining cancer anywhere in my belly when they were in there. The surgery was miraculous in that the side effects were relatively few, even though many bad side effects were quite possible and even expected - including removal of my bladder or rectum. None of that was necessary!
(11) There was a very small (less than 1mm) margin of non-cancerous tissue around the edge of the the removed blob of tissue. This means a good chance there are still microscopic cancer cells left. So they decided to do 4 rounds of chemo (FOLFOX-Avastin), then radiation, then a final 4 rounds of chemo.
(12) The radiation was completed July 5, 2005. I did the radiation in Houston at MD Anderson.
(13) After radiation, they wanted to do some more chemo for good measure. So I did four rounds of FOLFOX-Avastin, finishing in September 2005.
(14) In October 2005, the CT scans were clear(!)
(15) Jan 2006 I had my first 3-month checkup, which inluded a full torso CT scan. There were a couple of spots that showed up on the scan on my lungs. These had been there before but had disappeared (with chemo?). They were too small to know what they were. Dr Hoff suggested that I return in 8 weeks for another scan of the lungs.
(16) March 23,2006 a couple days after the scan I met with my new oncologist, Dr. Cathy Eng (Dr. Hoff moved back to Brazil, his home country). Unfortunately, the scans showed significant growth of the spots and several others as well. The largest is 11mm, just big enough to biopsy. So we are scheduling a biopsy - probably around April 17.
(17) April 7, 2006. The biopsy was positive for cancer. Details here. I am now taking a four rounds of irinotecan + intravenous 5fu, fourteen days per round. The story behind this protocol decision is here. The hope is to shrink and kill. I'm hoping surgery will become an option to remove the lung mets.
(18) May 22, 2006. Due to low white blood cell count and intestinal pain, probably from the chemo iritating them, my doctor postponed round three of chemo for one week.
(19) Nov 11, 2006. I finished my last round of chemotherapy. All these years of chemo is really beating me down. I requested a consult with a lung surgeon. To my surprise, he told me I was a good candidate for surgery. (details) Lung surgery to remove the mets in my left lung is scheduled for Jan 5, 2006.
(20) Jan 5, 2007. Successful lung surgery, left lung. I had thoracotomy with two wedge resections to take out two mets in my left lung. The surgeon expects to do a similar operation on my right lung in a couple months. You can follow my surgery by looking at blog entries from January 2007.
(21) March 23, 2007. Successful lung surgery, right lung. I had another thoracotomy, this time with four wedge resections to take out mets. Surgery details are in blog entries from March 2007.
(22) April 19, 2007. Met with my surgeon, and my clinical oncologist, Dr. Eng, at MD Anderson. No evidence of disease, no treatment planned. Return July 24 for CT scans. This feels like the first remission, although it actually is the third. The first was tentative where there was something on the CT scan, but the biopsy was negative for cancer, but was done "blindly". The second remission was with the knowledge that there were (likely) lung mets that had shrunk to not be visible on scans. This time - no trouble spots.
All of this is done under the care of a team of doctors at MD Anderson Cancer Center (MDACC) in Houston, TX.
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