Recovering & Pathology Report

Hello everyone,

Recovery

It has been just more than one week since my surgery, and I'm feeling pretty good. I am still fatigued and need a nap or two every day, but the pain has definitely subsided and is manageable.

Path Report

We got the surgical pathology report back, and the findings are overall positive. The tumor was greatly reduced in size by the chemo and there are good margins around the tumor site. The report is consistent with our understanding of the disease and that surgical removal was a necessary and important part of becoming disease free. During the surgery 17 lymph nodes were removed. The pathological review indicates that one of the nodes remained cancerous (and only this one). It isn’t clear how viable these cells are, or if this is something that should be treated, and there isn’t a lot of data to guide us as my level of response remains fairly unusual. Given that we previously had a clear PET scan, we are working to understand the detail in the pathology report. In fact, my sister is meeting with the pathologist at OHSU on Tuesday.

Ideally it would have been nice to have had no viable cancer left at the time of the surgery, but Margie and my oncologist both view the overall report as positive. 

What's Next

I'm definitely ready for a 2012 that is very different from 2011. As part of this I need to be comfortable in living with uncertainty, accepting of the the need for periodic scans & testing, and all the while living to the utmost. Luisa gave me a small necklace pendant with words I had written down when I was thinking about my intentions for this time:

• Appreciation
• Blessings
• Savor

Going Home!

Greetings all!

This is Luisa stepping in for Jim with a quick update on his surgery.

Jim's surgery on Wednesday went off without a hitch.  In fact, his surgeon described the procedure as straight forward, that everything went perfectly and that everything looked "beautiful."  It was music to my ears.  Additionally, the procedure was completed laparoscopically (minimally invasive) and took 2 1/2 hours.  We are fortunate they were able to do it this way as it helps with his recovery tremendously. 



He's been progressing well overall and today we received incredible news that he gets to come home today!  This is a gift on many levels, but especially the fact that today is Kate's birthday. 


Merry Christmas to everyone!


Best regards,


Luisa

I'm Ready for Surgery

One Month

It has been just over a month since I was disconnected from the pump as part of my last treatment. Since then I have regained strength, both physically and psychically. I gotta tell 'ya - it feel SO good to feel decent. I don't have much endurance and I've lost a lot of muscle mass and power, but it is nice to have resumed exercise. I've even been doing some bike rides, though my diminished cardio capacity from chemo really limits my speed and endurance - but still, it's great to be on the bike again. Overall, I feel that I am as ready for this surgery as I can be.

LuLu
On a separate note - I want to recognize the burden that Luisa (my wife) has carried through this year, and how much of a ROCK she has been to me and the family. It is not easy being a caregiver, working full time, and caring for the kids, all while I'm either smacked by side effects or recovering. Gavin and Kate have been doing very well throughout this year...all due to Luisa and her effort to ensure a stable, secure, and loving environment for the kids. I love you Luisa, and I'm forever indebted. Here is a great photo of she and kids on a hike in the Gorge on a weekend when I was sleeping.

Surgery set for December 21st

OK - now to phase 4 of this very interesting and challenging year. My treatment concludes with colon surgery on Wednesday December 21st to remove what is left of the primary tumor - a procedure formally known as a partial colectomy - think cutting a segment of a hose out, then reconnect the two pieces. Mine is the first surgery of the day, so I report to the OHSU hospital on the hill at o'dark thirty. The surgery itself will take from 2 to 3 hours. I asked the surgeon just how much is removed and he responded "just enough" (thanks for that). I expect to be in the hospital for 4-7 days, so I just might be going home on Christmas day. They said to anticipate a 4-6 week recovery time and to take 4 weeks off from work, though I may be able to return sooner.

Having the surgery on the 21st gives me more time to recover from chemo, and the family more time to enjoy and celebrate Christmas.

Getting Better!

I'm now two weeks out from the last chemo and finally feeling better. This last chemo was *rough*. Ugh. All of the side effects were stronger and lasted for a longer period of time. As today is a Wednesday, I am so happy NOT to be receiving chemo. I'm not sure I would have had another one in me.

My taste and appetite are slowly returning and I hope to be able to enjoy some wonderful food on Thanksgiving day. On December 1st I'll meet with the surgeon, look at lab numbers, and assess my overall recovery for chemo. If things are looking good we'll proceed with surgery on December 14th, otherwise we'll push it one week later to December 21st.

Last chemo - pump disconnected!

Luisa just removed the pump for this 12th and final chemotherapy infusion (yea!!) With luck and the grace of God, this will be the last chemotherapy that I experience for the foreseeable future. I'll be in the fatigue cave this weekend and likely into Tuesday, but will then start feeling better. I really look forward to feeling good again. This many chemo treatments really wears on a person.

The final surgery (colon) is scheduled for December 14th though it may get pushed one week later if I need more time to rebuild strength. Luisa and I are motivated to have the surgery this year and start with a fresh 2012.

But Who's Counting?

I created this count down on the bathroom mirror. Day 0 is 14 days after the 6th and final infusion (this Wednesday the 9th). I approach the final chemo session with both anticipation and trepidation - anticipation to be almost done, and trepidation knowing I'm going to feel like crud again. Of course, the fatigue has grown such that even the "good days" still require at least one nap and I go to bed at 9pm (like a toddler). My taste buds are unlikely to recover by Thanksgiving, so a nice meal out in December is definitely called for.

Chemo #5 (of round two)

I had the 5th infusion on Wednesday (10/26), leaving JUST ONE MORE. Sweet Holy Moses I can't wait to finish this out. I know these next four weeks are going to be rough with the side effects more pronounced and more disruptive. My thoughts to make it through are:

• One day at a time (maybe even count them down)
• Acceptance
• Frequently reminding myself that despite feeling like crap, there is nothing wrong
• Prayers for all of the above

Don't hesitate to reach out to me - getting encouraging phone calls or messages is great. I'll be going into the "fatigue cave" starting Friday and coming out of it around Tuesday. I have officially cut down on my working hours (FMLA) in anticipation of being more impacted by fatigue, and I have been given the OK to work from home on those days where I can be effective but require periodic rest. My work and my boss continue to be wonderfully supportive, and I am very appreciative.

One new aspect that is and will be a challenge these next four weeks - increased food sensitivity combined with losing my taste - all common with extended chemo. Foods that I would normally enjoy suddenly strike me as completely unappetizing and can even make me nauseous smelling or looking at them. I'm still figuring out what I can eat and I anticipate downing a lot of Boost/Ensure drinks throughout this time. They are reasonably tasty, have a good calorie count, and an excellent spread of vitamins and minerals. If I need to live on Boost and Protein shakes for a month - so be it. As you can imagine, I look forward to the end of this so that I can enjoy Luisa's wonderful cooking and some nice meals out.

Kick-*ss Scans

Each chemo session they draw blood for the CEA test. Well after chemo #3 the results went from 3.1 to 3.4 - a trend in the wrong direction. We weren't sure what to make of this so the doctor recommended scans to see if the chemo's effectiveness had diminished. This was a very unsettling development especially as I was laid low for 3-4 days by the fatigue, and with it the emotional impact which is hard for me to compensate for. Fact is, this had me very worried.

On Wednesday (October 5th) I had a CT and PET scan. For the PET scan I get an injection of a radioactive glucose and since tumors rapidly uptake sugars with their higher metabolic rate, the scan lights up cancerous areas. The result.....I am what they call PET negative!!!! The primary tumor isn't even showing in a PET scan, and this after three of the six planned chemo sessions. Not only is this good news but it is more than I could have hoped for. I can hardly describe the joy on receiving this news and the joy of sharing it with others.

Margie and I had talked about my hopes for a "kick-ass" scan at the end of the treatment and maybe it even being PET negative - and here we have it after three rounds. This news will really help sustain me through the tough times. My deepest thanks to all of you who continue to provide encouragement and support. I am forever indebted.

Standard disclaimer - this is a very good sign but it doesn't change the treatment. I have three more chemo sessions to finish the job on cancer that might be too small to be seen, and then the final surgery.

One Day at a Time...

I haven't divulged much of this nature in this forum, but my family and some friends know that this treatment is wearing on me. In the first set of chemo this spring, I was able to continue life in a pretty normal and positive manner. Now, fatigue and other side effects makes this much harder for me. I know it is just fatigue, and I should be thankful that the side effects are not as severe as other cancers, but I seem to find the fatigue especially difficult. In each round the fatigue will be greater and the recovery slower. BTW, when I say fatigue I mean 3+ days in bed, stumbling out to get food, and collapsing back in bed again.

I have no control of what my body is doing nor the end result of my treatment. The only thing I can control is my reaction and attitude, and in this I struggle. Yet "it is what it is"- I cannot change it and the treatment must and will continue.

So from where should I draw patience and perseverance? Foremost I believe that I must take to heart the phrase "One Day at a Time".

(in no particular order)

• Hold tight through the fatigue and DONT trust negative emotions during this time
• Know that the fatigue does lift and it will end when the chemo ends
• Ditto with almost all of the side effects, including nausea
• Resume active living whenever possible
• Lean on family & friends
• Pray for peace, acceptance, healing
• Recognize the great progress made and the continued healing
• Count down the sessions, and celebrate each milestone

Side Effects

One of the chemo drugs has a common side effect of losing sensation in your hands and feet (peripheral neuropathy). In the first round of 6 treatments I was fortunate and did not have any such side effects. After my liver surgery this changed and each chemo session brings a bit more neuropathy to my feet especially but also hands. It is to the level of annoyance not debilitating so that is good. We are trying some things to help including vitamin supplements, and OHSU suggested trying acupuncture, so we'll see how that goes.

Treatment #2

On Wed 9/14 I had the second infusion and per usual I go home with the pump and get small injections for 46 more hours.

After my first treatment two weeks ago, the fatigue hit sooner and much harder, presumably the cumulative effect of earlier chemo and because I'm not fully recovered from the surgery. The fatigue on Saturday and Sunday was absolutely crushing. I slept almost all of the time. This is hard when I want to spend time with my family and help around the house (sigh). To help with a sense of peace, I need to keep in mind that the only problem is that the highly effective treatment makes me tired - otherwise all is well. As my lovely Lulu reminds me, my job now is healing and recovery, and clearly my body needs this rest, so just give in and know that energy will return after the "down weekend".

Easier said than done as I find it difficult to stay positive when physically I am so down...the mind-body connection at work.

Chemo - Round 2 (now with photo!)

The plan is do do another round of six chemo cycles starting today, and in fact I'm writing from the chair in the clinic. Same routine as before - sit in the chair for most of the day and then go home with a pump that continues to dose the medicine for another 46 hours, then repeat again in two weeks. If all goes according to plan, the 6th and final chemo session will be November 9th.

Because I'm not as strong going into this round of chemo (still recovering from the surgery), the side effects, specifically fatigue, may be stronger, but we'll see.

Away we go - kicking more cancer arse! Note the Honey Badget t-shirt on the chair (our beloved mascot).

A Lesson

Based only upon some vague physical sensations, I managed to whip myself into a worry frenzy thinking the tumor has been rapidly growing since my last chemo session in June. This despite assurances to the contrary from the oncologist and my sister, based on observed treatment response.

I caved to my fear and obtained another CEA test which would have otherwise been done only when I resumed treatment on August 31st. After an anxious two days waiting for the result - the result was 3.5 (BAM! Ya baby!) For context, normal range is less than 3.1 and the last CEA test I had was after the 5th chemo cycle and I was at 4.2. So what does this show? First that the tumor is quite slow growing, and secondly, the 6th chemo cycle was very effective. What else does this episode demonstrate? That I need to be more at peace with my treatment and not allow fear to rule. Easier said than done but a valuable lesson to learn from.

Plans Set

I met with the oncologist today and we established August 31st as the date to start chemotherapy. This gives me three more weeks to heal and hopefully enjoy some time of strong health. If all goes according to plan I'll have my final infusion on November 9th. The oncologist (and my sister) said that I should respond just as positively to the chemo this second time around as the first, though it is quite possible that the side effects will be stronger as I won't be quite as strong going into the chemo as I was originally, but we'll see.

Three weeks post-op

Today marks three weeks since the surgery. I do not recommend it as an elective surgery if anyone was considering such <grin>. I'm feeling a bit better each day but it is slow going. The surgeon recommended four weeks off of work and I can see why. Wow - this is not an easy or quick recovery.

I have a pretty impressive scar - something akin to a shark attack. My understanding is that my body will have regenerated 90% of the liver in 3-4 weeks time so getting there. I typically take a nap during the day and have to lay down to rest periodically - all recommended for the recovery. I try to do a ~2 mile walk every day. Not exactly racing up the hills on my bike like I'm used to but better than nothing!

Lu and I meet with the oncologist tomorrow (8/10), presumably to determine when to start the 2nd set of chemotherapy. I suspect it will be a couple more weeks though to ensure I'm stronger. The chemo is the same as the previous set - 6 cycles of two weeks each. Life giving poison baby...

Two weeks post-op

Today marks two weeks (14 days) since my surgery. The time has passed like a fog as I suspect I have been in a fog for a good portion of this time. I have an post-op appointment with the surgeon this Friday, and check-in with the med-onc next Wednesday the 10th.

I was able to walk with Lu and the kids to the local park - rough a mile walk, so I figure that is pretty good. I'm still in a bit of a mental fog which is either me still recovering from a major surgery or a side effect of the pain medication I take every four hours - probably the latter. I have been lowering my dosage during the day and seeing how it goes. For the first time today I did not nap, and now at 8:40pm I can feel the tired. ;-)

Lu continues to astound me with her patience with me and energy toward maintaining normalcy in our house. The kids seems to be doing quite well and are enjoying all of this family time, though Daddy can't chase them very well.

Path Report From Surgery

A couple of days ago we got the pathology report from the actual tissues removed during the surgery. As you know, we had pre-operative scans and this report by and large confirms earlier scans.

In the removed liver tissue they did find a new small nodule that was too small to be detected from the PET and CT scans.  This mass had no living cancer cells.

From the primary lesion, the report indicated mostly all dead cells from chemo treatment, and some rare viable cells.  While the earlier PET scan indicated the possibility of zero living cells (and would have been nice to have the path report confirm this), the surgeon and my sister both assured us this this report is very positive and in their experience as good as it gets!  They have also reminded me that I will head back to chemo soon.  Bottom Line: No surprises and continued positive response to chemo treatments. 

I came home from the hospital on Tuesday the 26th which put my stay there are 8 days. The surgeon said to expect a four week recovery - during which my time my body is rebuilding the liver and recovering from the trauma of surgery. I've never had surgery like this, and crap, let me tell you, its like being hit by a bus.
-Jim

Yin and Yang

Hello all -

Good news:
- Jim continues to progress well. Vitals look good, cbg's are getting into the normal range and his phosphorus is declining which makes the surgeons happy as it's an indication that the liver is beginning to regenerate.

- He is now in a normal room. It is larger than some flats I've seen in the Pearl with an incredible view of the river and Mt. Hood, if she'd make an appearance through the clouds. We believe we have Aileen to thank for requesting this room for us. Many thanks!

Bad news:
- Rough, rough day. Transitioning from on-demand morphine to oral meds takes time to find the right balance and combo.

-Extreme fatigue, nausea, etc.

-This day left Jim feeling discouraged. The docs, nurses and I reminded him he is making great progress and that recovery brings up and down days. Every once in a while he bought into that.

Despite a real drag of a day, I continue to be inspired by his strong will and perseverance. He forced himself to walk tonight for the first time all day and the first few attempts were very shaky and short. After some short rests he improved considerably and walked longer laps.

During chemotherapy, I likened the cycles to riding waves...up and down. Recovery as we've quickly discovered, is no different. it's making a lot more sense now why we were told to anticipate a hospital stay of 5 or more days.

Thank you for continuing to flood Jim with many prayers, positive thoughts and bright yellow goodness.
-Luisa

O' Happy Day!

Greetings again everyone!  Luisa here.

Day 2 of Phase 2 is well underway and I have more great news to report:

- Jim called and woke me up this morning at 7 AM and you can imagine how surprised I was to get his call, so much so, that in my sleepy state, I thought I was dreaming.  He sounded fantastic and very alert.

- When his surgeon stopped by in the morning, Jim was sitting on the edge of his bed and Dr. B made a comment about how good Jim looked and that it didn't look like he just had an operation.

- The corridors of the ICU are formed in a U-shape and today Jim walked those corridors four times.  Both of the nurses that cared for him today were amazed at his progress.  Many patients coming out of surgery have a difficult time walking down just one hallway.

- He sat in a chair twice for an extended period of time.  It is difficult for him to fully sit up because it forces him to breathe deeply and it puts pressure on the incision, but he did it.  Further, he used the breathing apparatus many times during the day and he demonstrated improvement in attaining and sustaining deep breaths each time.  Taking deep breaths is important in the prevention of pneumonia.

- He finally had real food, much to his happiness.  He wolfed down a plate of pasta : ).  Transition to solid food a day after surgery is amazing.

He remains in ICU only because there weren't any beds available where he'll end up the remainder of his stay.  He'll either move out tonight or tomorrow.  He is receiving excellent care in ICU, his nurses are fantastic and he enjoys a room with a view.

I would like to add a detail to yesterday's post that I was reminded about today during conversation.  The surgeon indicated to us that the tumors felt very soft and spongy.  He also said that during surgery he could locate them via ultrasound, but he had a hard time locating them by touch because they had become so spongy, which is another sign of how well chemo did it's job.

Overall, Jim is in good spirits and he is very pleased.  He tires easily, which is to be expected, and fortunately, he has pain under control.  I am amazed by his progress and I couldn't be more proud of him.  I've had a perma-grin all day. 

Thank you for your continued calls, texts and emails.  I share each and every one with him and it makes him very happy.  

Sending much love from our home to yours!
-Luisa

P.S.  We've had questions about how the kids are doing.  They are doing great!  Quite fortunately, they've been spending the mornings at VBS and we've arranged fun afternoons with Audrey, Tia Joan and Tia Margie while I've been at the hospital.  They are excited that Jim is doing well and tomorrow they will finally get to see him.  The timing is perfect given that the nurses have disconnected most of the tubes and wires and Jim's color looks good.  Nighty night all!!

Honey Badger strikes again!

Greetings!  Luisa here.

I am very happy to report that Jim's surgery went very well and that the surgeon could not be more pleased with the outcome.  Key details his surgeon relayed:

- The right lobe of the liver was removed and upon inspection, he said that the chemo significantly did it's job.  The tumor shrank considerably.   

- Margie asked for validation that he did not see any other sites of disease.  She was concerned about cancer that can be visually seen but which may not have been picked up on the PET scan 2-weeks ago.  She asked the surgeon 3 different times during the course of the conversation for confirmation that he did not see anything and each time he validated that there was no new evidence of cancer that he could detect.

Jim is currently in ICU where he will remain for 24-hours at which point he will be moved to a regular room.  He will remain in the hospital for up to 5-days. 

Margie and I saw him in ICU and his vitals all look GREAT!  Even in a groggy and drug-induced state he managed to crack a couple of jokes - that's my guy! He first asked if the doctor performed the lipo-suction, which was a joke he threw out during his pre-op appointment 2-weeks ago.  Then he asked about when he could expect a cheeseburger.  Keep in mind he hasn't eaten solid food since Sunday night and today's surgery was delayed 4-hours. 

Please know how full of gratitude our hearts are for your love and prayers.  Sometimes the words "thank you" sound meager in comparison to how extraordinarily thankful we feel.  We are very blessed with amazing family and friends and with the tremendous support coming from many corners of the world.  Jim and I greatly appreciate the messages, phone calls, texts and emails we received over the past several days and during today.

Special thanks to Helen, Margie, Brian, Joan and Pat for taking shifts to be with me during this very long day. 

Ok, time for this guest blogger to sign out : ).  Many blessings to you and yours.

Sincerely,
Luisa

Surgery at ~11:30am

My surgery is scheduled to start around 11:30am (July 19th), making me the 2nd surgery of the day with the surgery is expected to take ~4 hours. Definitely easier than a 0-dark thirty time, and I'm assuming the surgeon will be nicely warmed up for my surgery. ;-)

I will have Luisa provide a post-op update on this blog.

Pre-op scans - good news

Today I had pre-operative PET and CT scans and this afternoon my sister Margie and I looked at the scans with the oncologist. We are still waiting for the full report from the radiologist, but basically, the news is very good.

The liver met was PET negative, meaning the tumor there is not pulling up any glucose, which indicates that that region no longer contains any viable cancer cells. The mass is still there though shrunken, but is likely necrotic tissue. This is huge. As to the tumor in the colon, the PET scan showed a small glucose uptake (which shows yellow on the images) but far less than the scan in March. There is a numerical scale applied to the uptake and when I get the radiologist's report I'll provide this detail. The CT scan showed that the colon region has return to normal size and shape!

Note that none of this changes the treatment plan - liver surgery continues on July 19th followed by another round of chemo then the final surgery.

The oncologist is very pleased with these results and actually gave me a hug. The journey is not done, but I could not ask or hope for better progress against this disease. I am very thankful. This is an answer to ongoing prayers. Today is also Luisa's birthday and this update she described as "the best birthday present ever".

I continue to be blessed with support and encouragement from friends and family. Thank you all so very much. I am forever indebted.

Jim

Surgery Scheduled - July 19th

The surgery is scheduled for Tuesday July 19th, probably at O-dark thirty.


The surgery is called a partial hepatectomy. Though I only have one confirmed met in the liver, to be safe they will likely remove most/all of the right lobe since the liver regenerates anyway (who knew!).  Because your digestive system shuts down in sympathy, I expect to be in the hospital for 5-7 days to ensure proper digestive function before they release me. I have never been admitted to a hospital or had anything other than minor hand surgery - so this will be new. I really look forward to hospital food. ;-) I will be taking a medical leave from work and they said to anticipate 4 weeks for recovery.

This gives me 4 weeks until the surgery, and I intend to LIVE LARGE during this time. I'll be taking vacation the week prior to surgery and Lu an Iwill definitely have a pre-op party at our house the weekend before.

I am scheduled for a preoperative CT and PET scan on July 29th. I hope and pray that this shows
a) Liver met has shrunk significantly
b) no other mets have appeared during chemo
c) generally that I've kicked cancer's arse with this round of chemo

Pump removed!

Today Lu removed the pump for this the 6th and final chemo session! Whoot! I also got CEA test results and I'm down from 5.7 to 4.2. That is a 94% reduction in 10 weeks of treatment. Hallelujah!

I think I'll know my surgery date early this next week, and I'll have another PET and CT scan on June 29th. Until the surgery I hope to recover my energy, my taste buds, and generally enjoy summer to the fullest. I did ask about getting EPO so that I could resume strong riding, but they said sorry. It is reserved for those with desperately low levels, and oh, elite athletes. ;-)

Thank you again my dear family and friends for the support!

Final Chemo Session!

Tomorrow (June 8th) is the 6th and final chemo session before liver surgery. I approach it with both excitement and trepidation. Excitement over being done and trepidation because I know it will bring more fatigue and other annoying side effects. I should get the CEA test results on Friday so I'll add a post then.

Here goes...

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Chemo cycle #5 of 6 - and more good test results!

I started the 5th chemo cycle on 5/25. All of my labs looked good including my white blood cell count. They also tested my CEA level again, and in the two weeks it went down another 40% - from 9.5 to 5.7. From the beginning of my treatment this is a 92% decrease. Yea Baby! It really helps to see this when "in the suck" of chemo, and I really look forward to completing the 6th cycle. It looks like I'll have surgery in late July which will give me and the family a nice break from chemo and a chance to recover physically and mentally.

I saw this picture from the Tour of Italy on a extraordinarily difficult stage climbing up Monte Zoncalon with an average grade of 12% with portions at 18-22%! Like this racer, I am supported and propelled forward by those around me - my friends and family. Thank you all.

More progress

Another encouraging test result. They tested my CEA levels again on Wednesday the 11th, and after two additional weeks of treatment it went from 15.1 to 9.5 - a 37% decrease in the two weeks. In the six weeks from starting treatment, it has gone from 73 to 9.5 - a 87% drop! Yea baby!!

Life-Giving Poison

I was thinking about chemo the other day and this phrase struck me - life-giving poison - as that is truly what it is. I'm about to start the 4th chemo cycle and as it approaches I have more trepidation because I know what it will bring. But then as I recognize that I feel poorly only because of the treatment. So I'm working on changing my attitude from that of worry about the chemo to acceptance (grudgingly so) and some measure of peace.

Pathology update - good

It took a while but we finally got a pathology determination on whether the tumor has mutations that are sometimes seen with colon cancer. They are KRAS and BRAF, and both were negative. This means in the future we can use another new medication (if necessary) called Erbitux (a EGFR inhibitor), and not having the BRAF mutation is good because it is a poor prognostic factor.

Both of these are good.

Some Good News

Colon cancer has a marker (CEA) that can be used to track cancer levels in the body. When I was diagnosed my CEA level was 73, which apparently is to be expected for someone with some but limited metastases. I just received the first CEA test result after four weeks of treatment and it has gone from 73 to 15. My sister the oncologist said she would have been happy with something in the fifties let alone half of 73. This shows that the chemotherapy is proving effective on this cancer. This definitely made the day for Luisa and I and is answered prayers. This also gives me strength to continue to persevere because with each treatment the side effects are accumulating and become more difficult to deal with.

My typical caveat - things can change but for now it is WONDERFUL news. For reference, normal levels are <= 3.

In the 3rd cycle, and it shows

Before you get chemo they do a full blood panel to examine numbers that chemo therapy typically affects - red blood cell count, platelet count, and white blood cell count. If these numbers get too low they may advise or insist on delaying treatment for a week so that your body recovers while giving the person a medicine that directs the body to make more white blood cells (how awesome is that!). Going into the visit I felt great but it turns out my white blood cell count is lower than they would like - 1500 being the cutoff and mine was 1100. This is common with the treatment. But because I am otherwise healthy the risk of infection is pretty low. The consensus of the doctor, Margie, and me was to proceed with chemo and to go in on Saturday for the white blood cell booster (which must be after pump disconnection). A week's delay would not have been medically significant and having another week of feeling good and strong would have wonderful, but it would have thrown off the bi-weekly schedule we have working our lives around, including Luisa's business travel, and the doctor is very aware of how this schedule change can be disruptive for patients.

Bottom line - I got chemo along with my snazzy take-home pump that gives me small doses for 46 hours, but I need to watch for a fever. I will likely staying away from work part of these next two days to avoid the germ pool that it can be.

It Feels Like...

I have been asked what chemotherapy is like. My understanding is that the range and severity of side effects tend to differ for each person, but for me, it is like getting the flu every two weeks - generally feel like crap, taste and appetite are diminished, stomach can be in turmoil, I'm tired and requires naps, and at the worst of it, I'm in a bit of a mental fog. Apparently the side effects to be much less if I were old, a smoker, or a heavy drinker - but that isn't me.

Tomorrow (Tuesday) is the last day of the second chemo cycle, and I'm feeling really quite good and hoping to get in another bike ride. The 3rd cycle starts on Wednesday with another 3 cycles to go before the liver surgery.

Hawaii

We are having a great time in Hawaii and I felt pretty good today (Monday). The chemo in the 2nd round hit me a little harder than the first and I slept most of the flight but I'm feeling better sooner which is great since we are in beautiful Mauii.

Gratitude

I have mentioned this to some, but I want to share what Luisa and I truly feel. Aside from this bastard disease I am battling, we are profoundly blessed in every other aspect of our lives. We have been moved, humbled, and buoyed by the love, support, and encouragement from family and friends. My sister the oncologist is truly a Godsend in this situation to whom we are forever indebted. Our employers have been nothing but wonderful and amazingly supportive and my medical benefits are great. We go into this fight with a truly powerful and amazing support system.

I am first and foremost blessed by Luisa - my amazing wife. Come on - have you seen my wife and spent time around her, and likewise my kids Gavin and Kate? Yup - one lucky guy.   :-)

End of 1st Cycle

I start my 2nd chemo cycle tomorrow, and on Saturday we travel to Hawaii for six days (yea!). I have felt quite good recently and was able to get in a ~20 mile ride Friday and a ride up to Crown Point on Saturday. I can't say I'm 100% but given I'm in chemo treatment, I'm quite pleased.

Not to get into bodily function specifics, but I'm convinced that the first round of chemo has actually shrunk my tumor. A positive sign that the chemo is doing its job!

Better

So chemo fatigue definitely hit me during the weekend especially Saturday (day 5). There was a party at our house to view pictures of our August Europe trip followed by wine tasting, but by 7:30pm I had to excuse myself and fall asleep. On Monday I was better and by today (day 9 of the 14 day cycle) I am much better. The nurses mentioned that day 7 is typically the nadir for energy levels. I anticipate that with each chemo cycle the fatigue will be deeper and longer in duration. I believe the plan is 6 chemo cycles then rebuild strength then the first surgery.

Emotionally I am I also much better. A relative sense of peace has returned, and with it the ability to appreciate the joys of living. I am very happy about this.

One side effect I did not anticipate - I have lost my taste for wine (the humanity). This appears to be easing as I reach the end of the chemo cycle.

Adjustments

So I had the pump removed Thursday (yea!) but was pretty wiped out most of the day either the chemo and/or the anti-nausea drug that I took in the middle of the night. I slept pretty well last night and I'm doing better today (Friday), and the foggy head feeling is starting to clear up.

The reality of side effects and not feeling 100% all of the time is starting to sink in...and this is an adjustment for me as I have been very blessed with great health most all of my life. First the adjustment to the shock of the news, and with the help of the awesome people around me (Lu, family, friends) and prayer I was able to rebound. Now I have this adjustment to the new "normal" of chemotherapy. I will get there...

As Luisa reminds me...what would Honey Badger Do?

First Chemo

I started chemotherapy on Tuesday March 29th. With the first session they go over a lot of information including all possible and likely side effects, possible complications and how we will respond, etc... We arrived at 8am and didn't leave until 2pm. It was so wonderful to have Lulu there with me. They start with some anti-nausea mediation, then a drug that enhances or catalyzes the effectiveness of the primary chemo drug, then finish with the chemo drug. I also go home with a pump that doses out the chemo for the next 46 hours. It looks like I have the oldest cell phone attached to my belt. I go back into the clinic on Thursday where they will disconnect the pump and also show me how to do this in the future.

So far the side effects are thankfully not too bad (KNOCK ON WOOD) - knot in my stomach, occasional kind-of headache, heart palpitations. I had difficulty sleeping last night but I expect that to improve.

Activity

I did the "Lawyer ride" last Thursday and Monday, though I did notice that my HR was unusually high given my perceived exertion. Margie had noted that my hemoglobin count is a bit low, so I'm taking iron supplements but will probably need to back off of the intensity (not so easy with that ride).

The Diagnosis & Plan

Diagnosis

On March 16th I was diagnosed with colon cancer via a colonoscopy. This test was done because of some annoying GI issues that everyone thought was either giardia, low bacteria in the digestive tract, or maybe colitis. So the colonoscopy was done to rule things out. Given no family history of cancer and specifically colon cancer and my age, little consideration was given to it being cancer. Alas - it is. The next day a CT scan found on spot on my liver - which complicates the treatment and makes the prognosis more difficult. I felt great prior and immediately after which I now understand is common with colon cancer. In a way I am thankful that I had some type symptoms that I pursued. For many, this isn't the case until the disease is very far advanced.

The next week we had some positive developments (or lack of bad which I GLADLY take)

• PET scan confirmed just one metastasis on the liver in a location good for later surgery
• No involvement of the lymph nodes or mets to lungs or other tissues
• Biopsy confirmed it is the most common of colon cancer (which makes treatment more straightforward)
• We completed appointments with the full medical team (one medical oncologist, two surgeons), completed all scans, and have the start of the treatment plan in place all within one week of diagnosis. My sister Margie is solely responsible for this wonderful timing.
• Given the otherwise good health, the limited number of mets (<=4), and the operable nature of the met on the liver, an aggressive treatment is pursue with a curative intent - that is to seek a full cure (though there are no guarantees by any means).

The Plan

• Start chemo right away to attack the overall disease. I started chemotherapy Tuesday (3/29) which includes ~4-hour in the clinic and then taking home a pump that I wear for the next ~2 days and continues to deliver medicine.  
•  After ~3 months of chemo I get liver surgery to re-sect the spot or possibly most of that lobe just to be sure of a margin of safety. Amazing the liver regrows fairly quickly though it does tap your physical reserves in doing so I did not know this!
• Resume chemo as soon as possible after the liver surgery for another 3+ months
• End with the colon surgery - at which time the chemo may make the surgery simpler as well