The 5% Club (2008-08-30)

Mon (8/25) went to MD Anderson for 6-month liver cancer checkup. Usual CT scan, chest x-ray, blood tests. Wed (8/27) and Thu (8/28) reviewed with doctors. Results were excellent! No signs of metastic/recurring cancer - no new masses found. Said to come back in 6 months.

On Thu (8/28) I met met my new medical oncologist (chemo doctor). My previous doctor left MDA for a position on the East coast. My new doctor is great! We also had an interesting discussion about my case.

My type of liver cancer originates in the bile ducts. It’s called intrahepatic cholangiocarcinoma. It’s pretty rare – even for MDA. Most people don’t survive this type of cancer. As usually it’s detected too late, after the cancer has spread (note, mine had not spread). All this I already knew.

But then he called me one of the 5%. I inquired more. He indicated that for all folks with my particular type of cancer, to survive 4-5 years like I have (I'm almost at 4-1/2 years cancer free) - only about 5% of the total cases do that.

I must say that was a shocker to me!! I certainly didn't know that! He mentioned my early detection was one key. I added the excellent doctors and facilities at MDA, and their aggressive treatments, were also instrumental in saving my life, and in keeping me here today as a survivor.

As I left his office, I reflected more on his comments. How everyone’s cancer is unique and personal to them. But for all of us with cancer, one should never give up hope. And there is always a chance for successful treatments and in becoming a long-time survivor. Even for the 5%’ers - like me!!!!

CanLiv (2008-02-22)

Mon (2/18) and Wed (2/20) went to MD Anderson for 6-month liver cancer checkup. As before - CT scan, chest x-ray, blood tests. Results were excellent. No signs of metastic/recurring cancer - no new masses found. Next checkup in 6 months. May 2008 will be 4 years cancer-free!

Also an exciting story ….

First, background - my type of liver cancer (intrahepatic cholangiocarcinoma) is real rare. Usually it’s detected late and thus has a high mortality rate. But if caught early, surgery may be an option, as was in my case. But even with successful surgery, it has a very high rate of recurrence in first 2 years. I had known all this when first told I had my cancer in 2004.

So Wed, in talks with my MDA oncologist and surgeon, they indicated I had beaten those initial odds. I was doing well in my survivorship. I was glad to hear that.

But the really exciting news to me was - my oncologist is forming a national foundation (CanLiv) specifically about cancers of the liver, gallbladder, and bile ducts. My oncologist is the President. Website is in development: http://www.canliv.org/

My oncologist, thru CanLiv, asked to use me as a "personal success story" in my journey with cancer! And possibly be a contact in helping others who are going thru this type cancer. I was thrilled to be asked and most definitely want to help however I can. After obtaining more funding in next 4-5 months, they plan to contact me and let me know my involvement.

This past year has really provided lots of new and enriching opportunities for me in my cancer survivorship. I’m just thankful for the opportunity to help others in the fight against cancer. I’m looking forward to helping CanLiv and hopefully other opportunities in the future!

Small World (2007-08-15)

Mon (8/13) and Wed (8/15) went to MD Anderson for 6-month liver cancer checkup. Same tests … CT scan, chest x-ray, blood tests. Results were fantastic! No sign of metastic/recurring cancer or new masses found. As before, recommend my next checkup in 6 months.

Interesting story. During my CT scan I met a patient with similar liver cancer as mine. He’s a 7-year survivor from MDA. That was encouraging to hear as I’m a 3+ year survivor. We exchanged stories and email addresses. I plan to keep in touch with him and his wife. Was really exciting to finally talk with someone with same rare cancer as mine!

And oddly – he’s from Victoria, TX (near El Campo). He has the same cardiologist there as my Dad. Small world I guess!!

Anderson Network (2007-02-21)

Tue (2/20) and Wed (2/21) went to MD Anderson for 6-month liver cancer checkup. Same tests … CT scan, chest x-ray, blood tests. Results were great! No sign of metastic/recurring cancer or new masses found. As before, recommend my next checkup in 6 months.

One of my doctors suggested I become part of the "Anderson Network". They link up new patients of similar cancer with survivors like myself. I could talk to them on the phone, answer questions, offer encouragement, etc. Not a big time commitment on my part. I said I'd like to do that. So I'm going to sign up for that this week. They said it really helps the new patients and I'd be a good "spokesman" as a liver cancer survivor! I’m looking forward to helping others out!

Also, this May 2007 will be my 3-year mark. Looking back it certainly doesn’t seem like it’s been 3 years. But again I can say it’s really been a positive change in my life as a result of my cancer. I’m looking forward to what the future has in store for me! And I want to thank all of you again for your continued thoughts, prayers, and encouragement. It really means a lot to me.

Two-Year Mark (2006-08-25)

Tue (8/22) and Wed (8/23) was at MD Anderson for my 6-month liver cancer checkup. Same tests … CT scan, chest x-ray, blood tests. Results were fantastic! No sign of metastic/recurring cancer or new masses found. They’re recommending my next checkup in 6 months.

Well with this checkup I passed the 2-year mark! The doctors at MDA said for my type of liver cancer, surviving the 2-year mark is the first major hurdle in ones journey. I believe the plan now is to continue with 6-month checkups until the 5-year mark, which will be the next major event one hopes for.

Several people, family, and events in my life these past 2+ years have had a huge impact on my survival. I’m so thankful for them. And all the doctors and staff at MDA are simply incredible. They’re all miracle workers in my book as they certainly saved my life!

As I reflect, unless you’re a cancer survivor it may be hard to comprehend. But the longer I survive, the more I’m seeing all the “good” that has come to me as result of my cancer. Cancer survivors have two lives, before and after cancer. For myself, I can honestly say I prefer my life after cancer. So much has been a positive change in my life, and I know I am a better person because of my cancer. I’m looking forward to what the future will bring for me!

A Blessing? (2006-02-22)

Tue (2/21) and Wed (2/22) was at MD Anderson for my quarterly liver cancer checkup. Usual tests … CT scan, chest x-ray, blood tests. Results came back fantastic! No new masses found or evidence of recurrent/metastatic cancer. Said to come back in 4 months which will be June.

Writing these updates is very therapeutic for me. Guess I figure as long as I can write them I’m still doing OK!

And I have to admit this cancer roller-coaster ride (22 months now!) has had a pretty profound effect on me. I didn’t really believe in miracles before but I do now. And this may sound strange, but I can admit in many ways getting and surviving cancer has actually been a blessing to me.

For those familiar with cancer, one can never be “cured”. Once you’ve had cancer there is always some chance of recurrence. But as a survivor your hope is to live the remainder of your life in remission and that the cancer doesn’t come back. And that’s the game plan I intend to follow!

"Lefty" Liver! (2005-09-29)

This week I had my quarterly check-up. Same tests as before … liver CT scan, chest x-ray, blood tests. Results all came back good … same as before … no new masses found or evidence of recurrent/metastatic cancer. They’re recommending my next check-up in 4-5 months.

The doctors said with my type of liver cancer that two years of being cancer free is a “milestone” event. Typically my cancer has a higher probability of coming back during that time. After two years the chances continue to decrease. It’s now been 16 months so I’m almost there!

I also had a funny episode with the radiologist/technician who was taking my CT scan. A normal liver lies primarily on one’s right side, sort of below the right rib-cage area. During the initial scans the tech asked me rather seriously if I knew my liver was “on the wrong side of my body” (her words).

I told her well yes I did! The reason being after my liver resection in May 2004, they cut out 75% of the right part of my liver (i.e. where the tumor had been). Since the liver can regenerate, mine “grew” towards the opposite side. Mine is fully grown but now sits on the left side of my body, and my other body parts (intestines) shifted to where my liver had been.

My doctors previously told me this happens sometime after a liver resection and is not a concern. Everything works like it should as long as all the parts are connected up right. The tech wasn’t aware of my surgery so when I told her she was relieved and we all had a good laugh!!

Quarterly Check-Up (2005-06-15)

Last week I had my quarterly checkup. Same tests as before, CT scan, x-ray, blood tests. Results were good ... no new masses or evidence found of recurrent/metastatic cancer. Next checkup is for October 2005.

Odd "New" Liver! (2005-02-12)

I recently completed my checkup #2 at MD Anderson. Same tests as before … blood tests, chest x-ray, and CT scan (abdomen/pelvis) … then met with both my liver surgeon/doctor and chemo doctor.

All good news again! All tests/results were negative for recurrent or metastatic cancer, no new masses or abnormalities found!

One of my liver function tests (BILIRUBIN) was somewhat elevated again and my chemo doctor prescribed medication (pills) to see if that will lower it some. Didn’t seem to be a big concern, though.

Next scheduled for blood tests in 2 months and then 1-2 months after that will be my usual checkup (#3 this time). They’re taking real good care of me at MDA and I continue to be impressed with all the doctors and staff there. I know I’ve got a long way to go but I have no doubt I’m getting the best possible care there as I continue my long journey to recovery!

I do have a rather odd liver, though, as a result of all this. The liver lies primarily on one’s right side, sort of below the right rib-cage area. It’s the largest gland organ, weighing about 3 lbs. After my liver resection in May 2004, my liver has now grown back basically to normal size.

However, due to how and where they had to cut my liver, mine has now grown back towards my middle and left side. But, the doctors say that happens sometimes after a liver resection … other body parts can move around and fill the open spot where the liver had been. Then, the “new” liver just grows back wherever it can. As long as everything is connected up the way it should be they said not to worry … so hey that works for me!

First Check-Up (2004-11-04)

It’s been a while since my last update, but there hadn’t been any significant changes in the past 6-8 weeks.

On Mon (11/1) I had blood tests, chest x-ray, and CT scan (abdomen/pelvis) as my first “check-up” since all my surgery and chemo/radiation treatments.

On Wed (11/3) I met with my liver surgeon/doctor and all results were excellent. There were no new masses, abnormalities, or metastases found … so basically all good news. They recommended a return check-up and visit in 4 months.

On Mon (11/8) I’m scheduled to meet my chemo doctor to review the same tests. However, based on the liver doctor’s review today, he thought the chemo doctor would have similar findings. So I’m not expecting any new surprises when I visit my chemo doctor next week.

Other than that, I’m feeling great, eating normal, still working full-time, etc. Guess if nothing else comes up there won’t be anything new to report until 4 months or so.

Bilirubin! (2004-09-01)

I saw my radiation doctor last week. After looking at prior tests and charts, they decided to reduce my total treatments from 31 to 28 days. So, this past Monday (8/30) was my last day for those treatments!

Saw my chemo doctor this week. They decided NOT to continue my chemo pills for 3-4 weeks which was different than originally planned last week. This was based on looking at my recent blood work and noting I had several "incidents" of side effects during my overall chemo treatments.

Since my type of liver cancer was not common, they really didn't have a good basis that continuing (or not continuing) the chemo pills would be a substantial benefit for me. Mainly they didn't want me to have the potential to build up a so-called "immunity" to the chemo pills ... say for example if I needed to have this same type treatment in the future. So in a nutshell, I've completed the chemo portion of my treatments, too!

However, my recent blood work this week noted one liver function test (BILIRUBIN) as being rather high. The doctor was a little concerned and wanted me to come back in 3 weeks for an additional blood test. Not sure what that may indicate, but it's certainly not as involved as my total liver cancer / treatments were. I've been poked, prodded, stuck, and jabbed in the last 3 months that whatever they have to do for this shouldn't be a big thing as far as I'm concerned!!!!

Return to Work (2004-08-21)

I returned to work this week (8/17). My radiation treatments are scheduled for 5:30 PM so I’m able to stop by MDA on my way home for those. I’m fortunate in that MDA is not too far by taking an alternate route home so that makes it a little easier for these remaining treatments.

Met with my chemo and radiation doctors this week. The lab work and such continue to look OK. The chemo doctor mentioned they may continue the chemo pills for 3-4 weeks after the radiation treatments end. Reason being … as the radiation remains in your body for about a month after treatments end, continuing with the chemo pills will enhance and work in conjunction with that remaining radiation … so overall will benefit me by doing that. They’ll decide if they want to do that after my treatments end … a little over a week from now.

Overall still tolerating the chemo and radiation fairly well, but can feel a little of the side effects as I get towards the end of the treatments.

Also met with my neurologist about my left shoulder pain/problem. After looking at my earlier tests and MRI’s, it was what they originally thought … something called “brachial neuritis” … possibly a result of after effects of the surgery and having to do with the body’s own immune system. But not a big concern and should get better in time. Also I won’t need any additional tests or physical therapy … so that was good news.

Started Chemo & Radiation (2004-08-05)

As mentioned in my previous post, I started my chemo/radiation treatments at MD Anderson on 7/22. The radiation is scheduled M-F and will complete on 9/2. Just had my 11th radiation today (out of 31) so already about 1/3 done. The chemo is being administrated via oral pill which I take at home.

So far all's going OK ... no significant side effects either. For my treatments they say fatigue, nausea, and diarrhea would be the common ones if any … although I’m told if they do occur they’re usually towards the latter stages of the treatments. Had a few bouts with one, but with their prescribed medication I was able to handle everything OK.

Each Monday I give a blood sample. Each Tuesday I visit my radiation doctor to review those plus my charts/treatments. So far those are looking good, too. Earlier I met with my dietician to plan the calories, protein, and liquids I’ll need for maintaining my weight during the treatments … and that’s all going good, too.

My doctor gave me a statement of release to return to work and my plan now is to return to work full time starting the week of 8/16. My radiation is scheduled for the afternoon/PM so I’ll stop by MDA on my way home from work to continue those treatments. However, the doctor did say if I experience any major side effects they could limit my ability to work a full day … but I’ll make those plans only if needed.

My shoulder pain from earlier is also doing better … although I still do not have full/normal mobility in that area. I haven’t seen my neurologist since all the tests and MRI’s they did last month and it was suggested I see him again … so I set up an appt for 8/16.

Last, wanted to say thank you for all the e-mails, phone calls, thoughts, and prayers during all this. I haven’t been able to answer each one but it is very encouraging to hear from everyone. It’s still going to be a long journey in the years to come but I’m confident this will all come out successfully … being in the best of hands at MDA.

Reschedule Chemo & Radiation (2004-07-21)

Latest news … Mon (7/19) I met with my chemo doctor to discuss the new re-scheduling of the chemo/radiation treatments. Everything was a “GO” from their standpoint and the chemo portion remained as previously planned … to be administered via oral pill (Xeloda).

Tue (7/20) they re-did my radiation “simulation” treatment and put new markings on my skin for the radiation beams. Radiation treatments also remained as previously planned … 31 days of treatments (M-F). They also set up my schedule … 3:30 PM each day M-F … with a weekly meeting each Tue morning with my radiation doctor. My treatments are to start this Thu (7/22) with my last treatment being on 9/2 … just in time for Labor Day!

The doctors again mentioned these chemo/radiation treatments are of a preventative dose, and should be less intense and toxic than others. I still may have some side effects with my treatments and they gave me two prescriptions/pills to help with these … to be taken on an as need basis. They also said I should be able to work during these treatments but I would have to be the one to monitor that … how I feel, etc.

Last, I scheduled a meeting with the neurologist to review my left shoulder pain and the MRI and EMG tests they did earlier. It’s on 8/16, so I have some time before I have to see him. My shoulder seems to be getting better daily so it may be almost all well by the time of that appointment!

I’ll keep all informed how my chemo/radiation treatments go and for my CVX co-workers about possibly starting back to work sometime.

Remove the Baggie Gizmo (2004-07-18)

Last Thu (7/15) I had a CT scan to check the seroma drain/tube and fluid drainage levels. Results were OK so they disconnected the tube and all, patched it up, and sent me home. That was a relief as the tube and baggie gizmo was kind of a nuisance to deal with … so glad to be somewhat “normal” again.

Next up is a meeting with my chemo doctor on Mon (7/19) to review my status and re-determine plans, treatments, and schedules for the upcoming chemo/radiation. This is basically where I was several weeks ago prior to the seroma fluid (since the chemo/radiation had been put on hold at that time). I will also need to do another “simulation” treatment by putting new “ink markings” on the outside my skin around the liver for the radiation beams, as the seroma fluid changed those up somewhat.

My left shoulder pain is continuing to improve … strength and movement … by doing my own “exercises” of the area. Still haven’t heard anymore from the neurologist although I haven’t been pursuing it much either. As it is definitely getting better I’ve decided to wait for awhile and maybe re-visit this at a later date … if I don’t hear from the neurologist before then.

Drain the Fluid (2004-07-11)

More news and a few changes. The “seroma problem” wasn’t quite as simple as they first described. I had the fluid drained Fri (7/9), but they decided to keep in me the hospital for the nite for observation (back again!). I was able to come home late Saturday, but they hooked me up with a baggie gizmo so the fluid can continue to drain. Not sure how long I’ll have to wear that, but I’ll need to monitor and upkeep that daily now.

I’m planning to call the chemo doctors on Mon (7/12) to review this and see if any additional tests are planned for the week (as they weren’t available over the weekend). I do have another CT scan scheduled for Thu (7/15) to check out the seroma and my liver. Then, a meeting with the chemo doctor the following Mon (7/19) to review those results.

So, guess for now the start date for my chemo/radiation is in limbo … but certainly doesn’t look like 7/19 as I’d thought last week.

The neurologist also requested an additional MRI early Fri AM (7/9) for my shoulder pain/problem, prior to my seroma work. The results/pictures from one of my earlier tests weren’t that clear, so had to have this additional one re-done. I honestly don’t know why it’s taking him so long to figure this out … 3 MRI’s and the electromyograph (EMG) tests already. My arm movement has improved since 1-2 weeks ago and I’m sure this will all come out OK so I’m not as concerned about this problem.

I had a meeting scheduled with the neurologist on Mon (7/12) but cancelled that when all this seroma stuff came up over the weekend. I may re-schedule that … but at the moment I’ve got bigger fish to fry (seroma, chemo, and radiation) and really just want to put the shoulder stuff on hold until I sort out the really important problems with my liver … so we’ll see!

Seroma! (2004-07-07)

A new development came up today and looks like the chemo/radiation treatments will be delayed for at least a week!

I met with the chemo doctor today and from my recent CT scan, said I had developed SEROMA … which is a build-up of excess fluid near the surgical site and can occur a few days after the drainage tubes had been removed following surgery. Said it’s very common and not of a concern. But, now they’re planning on draining that this Friday, sending off to the lab to check for infections, and then another CT scan sometime next week.

Then the chemo/radiation may start on 7/19 if all looks OK. Also, they may have to redo the radiation “simulation” treatment I had this Tuesday due to the seroma … as the markings now may not align correctly for my liver after the drainage. The way things have been going the past few weeks I don’t get too excited when they plan or schedule anything as something else always seems to come up … like this.

Also had two MRI’s done this week regarding my left shoulder pain/problems. I’m meeting with the neurologist on Friday to go over those along with the electromyography (EMG) test they did last week. The way my luck has been going recently it wouldn’t surprise me if the neurologist finds something too!!!

Last, I met with the nutritionist/dietician and she gave me some material to read on what to eat, not to eat, etc. during the chemo/radiation treatments.

I think it’ll all work out OK … it’s just frustrating for me as I’m ready to get on with the chemo/radiation treatments, start work, etc. but all this other “stuff” keeps coming up to delay it!

Prep for Chemo & Radiation (2004-07-04)

Last week I had two extra days at MDA I hadn’t originally planned on … four total that week, as follows:

* 6/28 – Met with chemo and radiation doctors to discuss upcoming treatments. The chemo portion is to be administered via oral pill (Xeloda) … which will be good … as chemo is typically done with a bag or pump device. The radiation treatments would be for 31 days rather than the earlier mentioned 25 and would still occur M-F. Also, think those may start on 7/12.

* 6/30 – Met with surgeon/doctor to discuss post-surgery status. Took blood tests as prep for chemo/radiation treatments. Met with neurologist to discuss left shoulder pain/problems and he scheduled some nerve and muscle tests (electromyograph - EMG) for later that week, plus an MRI. Neurologist thinks it may be related to “after effects” of the surgery … perhaps “acute brachial neuritis” … something to do with the body’s own immune system. Said this is not real common, but also not unusual and one cause can be after surgeries in the abdomen area (e.g. liver). If so, “cure” would be arm exercises and then in time will slowly heal itself … months later. I have noticed quite some improvements in the past few weeks, too.

* 7/1 – Had CT scan (abdomen) as prep for chemo/radiation treatments.

* 7/2 – Had electromyograph (EMG) regarding left shoulder pain/problems. Involved small shocking of the nerves plus thin needle in the muscle areas and then readouts on a computer. Wasn’t real pleasant to go thru but tech said the results were pretty OK. Neurologist then scheduled an MRI for next week.

For this week, I have two full days at MDA of stuff, unless they schedule some more later in the week.

Tue (7/6) I’m to have an MRI of the neck/shoulder area. Also will have a “simulation” treatment. This involves prepping me in the radiation machine by putting “ink markings” on the outside my skin around the liver area so they will know where to shoot the radiation beam during the treatments.

Wed (7/7) I’m to meet with the chemo doctor to review my CT scan and blood work as prep for the treatments. Also will meet with a nutritionist/dietician to assist me with my diet and such while on the chemo/radiation treatments. Last, I’m to have another MRI of the chest area (related to the same shoulder problem). I’m a little confused as to the need for this test, but will talk to the neurologist on Mon about that.

Then, if all goes as planned, the chemo/radiation would start on 7/12 and run thru 8/23. So, not only will I be spending my summer vacation at MDA, my birthday also falls during that time! Overall continuing to get better each day. Also, I have started driving so now I’m mobile in that area … doing my own grocery shopping, other local stores, etc.

For my CVX co-workers in Houston … I was trying to determine when I might start back to work. When all this originally began, I thought it would be a one-time surgery, out for 6 weeks, and then back to work. But with these additional chemo/radiation treatments and now this shoulder thing it kinda changed things up a little. I’m hoping this shoulder thing isn’t something BIG too … and I’d really be surprised if it is.

As my radiation treatments will be for 31 days (M-F), I’m considering scheduling those in the afternoons. That way I might work mornings … ½ days or so … and then go to MDA in the afternoons for treatments. The doctors mentioned I may have some effects with the chemo/radiation such as fatigue, loss of appetite, nausea, indigestion, etc. but each person is different as to what they may experience … and would have to wait and see what may happen to me, if any. Plus, they do have medications to help with these effects.

I’d like to first take one week of the chemo/radiation treatments to see what I’m in for, schedules, etc. … and then maybe begin work the following week. So, assuming the radiation starts as planned (7/12), I might be able to go back to work on 7/19. This is all speculation for now but I’ll definitely know more after this week … and guess will just go from there.

Shoulder Problems (2004-06-22)

I have several scheduled appointments at the end of June (6/28 and 6/30) at MDA with an oncologist, radiologist, and my surgeon/doctor for a few more tests and prep prior to starting my chemo and radiation treatments. I’m guessing those treatments would start the following week … 1st week in July … but will know for sure after meeting with the doctors.

Another "ailment" came up just a little after my release from the hospital … nothing major and not related to the liver cancer. My left shoulder area (collar bone, etc.) felt somewhat sore … kinda like arthritis in a way … and still don’t have “full strength” in that area. I’ve been doing some arm exercises and that’s been helping. However, my doctor suggested I see a neurologist and so on 6/30 I’ll also be seeing them at MDA. Hopefully they’ll be able to figure out what’s going on. This might have something to do with an epidural I had for my surgery (for pain relief) but don’t know … just my thoughts.

Overall seem to be getting a little better each day. Still get tired at times, but take 2-3 naps a day and that keeps me rejuvenated. I’m hoping to start driving some this week … around the neighborhood initially … as the doctor said I might be ready by then. My incision area is still kinda "puffy feeling" with pressure, but that’s normal … guess since the liver is still growing. Sometimes get a little frustrated as I wish the recovery would go quicker, but realize it’s going to take awhile. I’ve been eating normal foods … still trying to gain some weight (eating ice cream, etc.), but it’s still tough for me trying to put on that weight!!!

Chemo & Radiation Time (2004-06-10)

I met with my doctor/surgeon yesterday (6/9) to review my surgery and pathology of my liver/tumor. A couple of “new” developments came up. My doctor had presented my case at a weekly council/meeting of other doctors at MDA … basically to review everything about my liver cancer, obtain other inputs/opinions, etc.

First, no cancer was found anywhere in the lymph nodes and there were no signs of any metastatic cancer (i.e. the cancer had not spread outside of the liver to any other organs). However, due to the closeness of the tumor to where they had to “cut” the liver (i.e. to the remaining 25% good part) and nearby remaining blood vessels, they’re recommending a preventive treatment of chemo with radiation - called adjuvant therapy. It’s possible there could be some minute traces in the blood vessels in the liver area and that’s why they’re recommending these treatments.

But, my chemo/radiation treatments will be less intense and less toxic than what most are familiar with. Those other treatments are used for actually killing existing cancers within your body … and typically one may loose their hair, appetite, become weak, and such. However with my treatments, since I have no cancers to kill, they’re saying it’s more a preventative measure … sort of like insurance. The doctor wanted to err on the side of caution rather than possibly allow the cancer more of a chance to come back.

So, starting in about 3 weeks, I’ll begin a 5-week course at MDA for this (once a day Mon to Fri … so 25 total days). Some of this might overlap my still being out of work, but once I do go back to work, figure I’ll try to arrange some type of ½ day work schedule and hope to go in the afternoons for my treatments. Each day treatment takes only less than an hour. But, with driving, parking, etc. probably would be 2-3 hours total time … which is why going in the afternoons makes better sense.

They also removed the staples from my incision area and said that’s healing well. Plus with my liver resection, they removed my gallbladder … so at least now I won’t have to worry about getting any gallstones in the future!!!!

All in all I’m feeling better each day. Eating better, too … trying to eat more protein which they say helps with the liver regeneration. I’ve lost some weight since the surgery and my problem has always been GAINING weight, so that’s going to be tuff for me. Also, probably won’t be able to drive until about 2 weeks.

I’ll finish by saying I certainly didn’t expect this is how I’d spend my “summer vacation”, but when I consider what the alternative might have been … maybe it’s not too bad a way to spend it after all!!!!

First "Post" Surgery (2004-06-05)

Greetings all. Here’s the latest on my recent liver surgery. First, for those not familiar with what led up to this surgery, I’ll begin with a re-cap ...

In January 2004 I had a physical and they found elevated liver enzymes, which indicated something was wrong with my liver. Over the next few months … further tests and blood work, including an ultrasound were performed … all negative, but the enzymes were still elevated.

An MRI was performed in April and an abnormal mass was found on my liver. A very dear friend of mine who works at MD Anderson (Houston) strongly suggested I go to MDA for a second opinion. She set up an appointment for me with a one of the top liver specialists and I went there for tests in May.

A CT scan was performed at MDA and also found the abnormal mass (4.5 cm). A liver biopsy confirmed it was cancer. I also had a CT scan of the chest and an EGD with colonoscopy (upper/lower GI) and all those came back negative. This strongly suggested the cancer was confined to the liver and had not spread anywhere else.

The doctor’s diagnosis was I had a rare form of primary liver cancer that begins in the bile ducts (called intrahepatic cholangiocarcinoma). Articles I’ve read said the incidence rate is about 1 in 100,000 to 200,000 people; another I read said only 3,000 people is the US are diagnosed with this yearly so it is pretty rare. Even rarer for me was I had no other known risk factors that typically lead to this … so there’s really no way to determine just how I got it, but I did.

Recommended treatment for this type of cancer was surgery, called a liver resection. The liver is the only organ able to regenerate itself, and the plan was to “cut” 75-80% of the liver … and it will still continue to function until it “grows” back to normal size in a couple of months.

On 5/25 I had the liver resection surgery at MDA. Surgery took 5-6 hours and I was then in ICU and/or recovery for a 1-2 days, and then moved to a private room. The operation went extremely well and the doctors said it could not have gone any better than it did. The entire medical staff at MDA truly are miracle workers!

On 6/1 I was released from the hospital and am home now for rest and recuperation but it will be a long recovery process. May take up to 6 weeks before I’m completely well and able to go back to work. My brother from Oklahoma is acting as “home nurse” for a week and I will also be spending some time with my parents in my hometown (El Campo, TX) while I recuperate. I am still tired however each day I feel I am getting better with my recovery. The fact I am younger and in otherwise good health, that should help with the recovery process, too.

The doctor indicated the “margins” of the liver/cancer looked good, meaning it had not spread past where they had made the cut of the liver. I have a follow-up appointment next week with my doctor for further tests and to discuss any future schedules, treatments, and such. However, there is currently no talk of any needed chemo or radiation.

Cancer works in mysterious ways so there is still a possibility it can come back (like all types of cancers can). However I can’t dwell on that for now … and will have to tackle that only IF it happens.

I want to thank all of you who kept me in your thoughts and prayers during these times … and who sent gifts, cards, visited, and called while I was in the hospital … that was REALLY appreciated.

You may e-mail me at home or phone … although if you call I’ll be spending time between my home and my parents in El Campo and don’t have a definite plan on just where I’ll be. If you’re in the Houston area, you’re also welcome to visit me when I’m home, but please call first to make sure I’m around.