Note: This FAQ was written in January 2007 back when our Great Cancer Adventure kicked off with a bang. I’ve left it as is because, while dated, it’s still full of good information and serves as a reminder to me what was going on back then.
About these questions…
This list of questions describes our situation pretty bluntly. Feel free to share this information with whoever wants to know. We are neither ashamed nor embarrassed by what we are going through and our hope is that by being transparent about our experience we will encourage every single person who reads this page to discuss with their health care provider the need for an evaluation for colon cancer. Even symptoms that can seem minor or embarrassing can be early warning signs that your doctor can recognize. (See “What were Maggie’s symptoms?” below.)
What has happened to Maggie?
Maggie has been diagnosed with colon cancer.
When did she find out she had cancer?
Friday, January 5, 2007 at about 3:00PM. The gastroenterologist informed her over the phone that the liver biopsy contained cancer cells, much to their surprise. That was a tough day.
Has the cancer spread?
Yes. The cancer has spread to her liver and lymph nodes but MRIs, CT and other checks have not found any other places.
What stage is Maggie’s cancer?
Stage IV
Is that bad?
Very.
Is Maggie going to die?
Well, duh! Everyone dies! Buts seriously, Maggie’s cancer is incurable. The doctors are not very optimistic but we choose to believe that the doctors don’t have any idea what they are talking about. We intend to fight this with all the strength we’ve got. And if that doesn’t work we’ll file injunctions until it just gives up and goes away.
What were Maggie’s symptoms?
Maggie has experienced a variety of seemingly innocuous gastrointestinal symptoms* over the past year but none that we believed alluded to a serious medical problem. We were wrong. In late November Maggie began experiencing abdominal pain accompanied by a strange lump slightly below her left rib cage. The abdominal pain continued to increase in intensity. Over the Christmas break and New Years the pain severity increased dramatically until it was nearly completely debilitating.
*It turns out that what we believed to be stress-related or IBS-related symptoms all were early warning signs. It’s very important to understand that ANY persistent changes in bowel habits needs to be evaluated by a medical provider. This includes diarrhea, constipation, changes in the caliber or girth of stools, blood in the stool, etc. Now, eating at a restaurant and then getting diarrhea for 2-3 days that resolves on its own probably doesn’t need to be evaluated. Or, going on vacation and developing constipation because “you really like to use your own toilet at home,” probably doesn’t need an eval. But if any GI symptoms persist or go away and come back, this should be checked out. Persistent lack of energy, unexplained weight loss or gain, and/or pale skin are all other very real warning signs that should prompt discussions with your medical provider. (Many thanks to Dr. Le for providing this correction and addendum.)
When did Maggie go to the hospital?
Chris took Maggie to the emergency room on Saturday, January 6 after watching Maggie suffer great pain while trying to eat lunch. Another CT scan determined that the CT-guided liver biopsy had not caused internal bleeding and that her liver had dramatically increased in size since her previous CT scan on December 18, merely a few weeks back.
How long was Maggie in the hospital?
Nearly two weeks – from Saturday, January 6, 2007 until Thursday, January 18th.
What happened at the hospital?
Maggie had “emergency” surgery to remove the cancerous tumors in her colon and went through a number of other tests. She was also given some really strong pain killers to help alleviate her crippling pain.
What happened in surgery?
The surgeon made a large incision from her sternum to her pelvic bone and removed approximately 18” of her colon, including two tumors that were nearly completely blocking the colon. The surgery took approximately 4 hours followed by about 2 hours of intensive care. There was some minor tearing of her spleen due to having to pull the two remaining ends of the colon together but the surgeon expects no long-term effects from that damage. The surgeon said that Maggie was a pleasure to operate on because she was in such great health and very responsive to the procedures.
Does she need a special diet after surgery?
No, her diet is unchanged. The colon is approximately 6 feet long. The 18” of colon that the surgeons removed is approximately 25%, which should minimally impact her diet or other lifestyle choices. She is happily eating anything she wants although her appetite is largely suppressed due to the pressure of the liver pressing upon her stomach. We are trying to eat numerous small meals instead of a couple of large meals.
How is her recovery from surgery going?
It’s going ok. She has lost a lot of strength and muscle mass in her arms and legs so that makes daily tasks more challenging. Coupled with a very real lack of energy she needs many breaks throughout the day to recoup from even the slights amount of activity.
How is her liver?
Her liver is extremely enlarged and completely filled with tumors. We’ve asked the doctor many times “how many tumors?” and he always has the same answer: “many.”
Can the tumors in her liver be removed?
No. Her liver is filled with tumors preventing any realistic surgical removal. Instead, the oncologist has begun aggressive chemo treatments that will hopefully cause the tumors to shrink.
However, we are vigorously investigating an operation called a liver resection. Based on our current understanding of a liver resection, the parts of the liver that contain visually-obvious tumors cells are surgically removed, allowing the remaining portion of the liver to regenerate, taking advantage of the liver’s unique regenerative abilities.
Can Maggie get a liver transplant?
This is a harder issue than you’d hope. Since Maggie’s cancer is not confined to her liver few surgeons would attempt such a transplant for fear of reinfection.
When did she start chemo?
Maggie started her chemo treatments on Tuesday, January 16th. Her 2nd round started on February 5, 2007.
When will she know if chemo is working?
This is a tougher question than you’d hope. The doctor has said that it’s likely that Maggie will know if the chemo is working before he will. The doctor has also said that it may be many months before we can expect any results. It’s quite unpredictable and predictably unreliable.
What happens if chemo doesn’t work?
We’d prefer not to find out.
What type of treatments is she getting?
Maggie is on a 21-day cycle for chemo. On day 1 she is given CTP-11 intravenously over two hours. She takes Xeloda orally on days 1-14 twice a day. On days 15-21 she rests and recovers from the chemo treatments. At this point we don’t have a fixed number of cycles she’ll have to endure. (See page about chemo drugs.)
What does chemo feel like?
Chemo administration is simple – for Maggie it’s both an intravenous fluid given painlessly through her port-o-cath and set of pills taken twice daily. However, as the poison takes effect the symptoms are varied. Thus far the ones that have affected Maggie include:
- Neutropenia
- general malaise not unlike a really, really bad hangover
- unpredictable nausea
- lethargy
- “chemo brain” – a neurological disorder than affects the short-term memory
- Hair loss (yes, all hair – eyebrows, eye lashes – all of it)
- Weight loss and lack of appetite
There are about a bazillion more that we really, really don’t want. This stuff sucks.
How does chemo work?
Ha ha ha! I LOVE IT when people ask me this question! As an overachieving, over-obsessive, educated person who would walk the world in broken-glass-filled socks just to slightly improve the quality of life for my wife, suffice to say I’ve done just a little bit of research on this subject. The undeniable truth is that no one actually has any real idea how chemo works. And it amuses me to listen to those who think they do when even the best scientist agree that, really and truly, they have no idea.
However, here are some fun facts to impress your friends with:
- CPT-11 (also known as Camptosar or irinotecan), the main drug of Maggie’s chemo treatments, comes from a tree found in China
- Avastin, Xeloda and Neulasta are also derived from plants (although I lost the links that gave the details…. I’ll find them.)
If there’s any lesson to be learned from this little “Maggie and Chris Visit Cancer Camp” experience it is that we should be much, much more respectful of nature because we still know not what nature has given us right under our noses.
As to the specific workings of the drugs, the current belief is that:
- CPT-11 works by disrupting the cell division process (gumming up the process of DNA replication during interphase by binding to each unzipped strand)
- (more explanations to come…)
What is Neutropenia?
It’s very much like having full blown AIDS. Learn more about it here.
How long does each intravenous chemo treatment take?
Approx. 2 hours per specific treatment. However, due to drug interactions, blood tests and other complexities we typically spend more than 4 hours at The Spa. On Monday, February 5th for the start of her 2nd round of chemo we spent nearly 8 full hours at The Spa (8:20AM until nearly 5:00PM).
Can she have visitors while she gets treatments?
Visitation is definitely permitted but until we’ve gotten a few treatments under our belt we’d prefer to keep it a private affair.
Will Maggie lose her beautiful brown hair?
She’s definitely loosing her hair. As of today (February 5th) her hair is coming out in thin clumps. There’s no sign of patchiness but the inevitableness is clear.
We’ve been told that Pat Painters in Austin is a great place to find quality wigs. We’ll be checking into this as time permits.
How is she handling the therapy?
Chemo sucks. Don’t get cancer.
We’ve had a real fun run of morning nausea and vomiting. We are still trying to figure out what the magic potion is to stop that but we continue to fight with it nearly daily. On related note, we can highly recommend the following bags for handling the excretion of bodily functions: http://www.gkrindustries.com/ They work fantastic, they are leak/spill proof, contain the smells and are quite handy to keep in your pocket until needed. Buy some for you and your friends with kids.
Who is her oncologist?
Have you contacted for a second opinion?
We have had numerous recommendations for doctors, specialists, spiritual guides, etc. and we thank everyone for their help. As of now we have spoken briefly to Dr. John Nemunaitis at the Mary Crowley Medical Research Center and expect to be in contact soon with Dr. Steven Curley at MD Anderson.
When will Maggie come back to school?
Maggie is back at school as of Tuesday, February 6th. She is taking 2 classes and is in class Monday through Friday. She’s also taking 2 externships for a total of 9 credit hours. Chris has come to Waco to help as needed.
What can we do to help?
Your support in spirit is help enough. We are very, very blessed to have an extremely strong support system of friends and family that have been essential during this time. We’ve still got a tough road ahead and may, at some point in the future, ask for some assistance but as of right now we’re doing ok.
What is Maggie’s home address?
Austin, TX 78731
Where does she get chemo treatments?
Southwest Regional Cancer Center
901 W. 38th Street, Suite 200
Austin, TX 78705
Can you send me updates via email?
Yup. We are setting up a mailing list so that you can subscribe to be notified when things change. Watch this page for updates on that in the next few days.
Why is this web page so ugly?
That’s a pretty easy question to answer. This site is so ugly because Chris made it. Had Maggie made this site it would have been a lot prettier! J