Getting Healthy

Last month I did the devotional at our monthly deacon’s meeting. For the topic I chose the topic of suffering and I centered the devotional around 1 Peter 5:10, "After you've suffered awhile, the Lord make you mature, perfect." I discussed how suffering is part of God’s plan and that the Bible tells us that there is a purpose for our suffering. After the devotional I had to leave the meeting early because I was feeling nauseous. That very same night I was taken to the emergency room for an intestinal blockage.

I think almost all men imagine that they are brave in times of their suffering. We all want to have a high pain threshold. As Christians, we are told to rejoice in our suffering as a show of faith towards God. However, I can honestly say that I was embarrassed at how I behaved in the ER that night with what I was going through with the intense dehydration and vomiting. That night was not my best show.

I was admitted into the hospital and without going into details, I can say the following week was an awful week. At some point though, I turned to God and confessed, “I am a weak and wretched man, but right now I just need your comfort.” The following morning I was allowed to start a liquid diet, and within a couple of days the obstruction began to resolve. The doctors were happy with my progress and I was allowed to go home for the holidays.

Experiences like these provide vivid contrast in life. It is like I sometimes go through life in a blurry haze, and then something like this happens and it is like putting on the 3D glasses at the movie theater—life jumps out at you. The thing I marvel at is the immense, eye-popping love and joy that emerges. I felt a tremendous amount of love from God, my wife and family, our friends, our Church and my work. The support has been tremendous and we really do appreciate it. I have been going through this for four years, and people continue to provide amazing support for us; I feel bad because I feel helpless to repay everyone for what they have given my family. It’s not like we had a rough go for a month or two, and we are past it. This is an on-going challenge.

It has been almost a month since I was hospitalized for the intestinal blockage. I have been off of chemo since then and right now we are concentrating on getting me healthy again. The two main things we are trying to get into working order is the eating and the breathing. I still have lots of healthy lung tissue, but the tumors in my lungs have still paid a toll. I have a lot of shortness of breath and coughing and I have to be careful about the coughing fits because it will irritate the tumors. Things with the breathing have improved considerably though since they removed about a liter of liquid from my left lung.

Also, we believe I have developed some sort of auto-immune response to either the cancer or the chemotherapy. This has been a considerable challenge since October because of the fatigue and muscle/joint pain it causes. The most frustrating part of this is it has limited my activity quite a bit.

Today I was at UMC for a procedure to evaluate the mobility of my digestive track. Even though we were able to avoid surgery for the intestinal blockage, I still have a partial blockage and it doesn’t seem to have improved much since then. This procedure typically takes several hours but I was there for over 7 hours. The technician told me she has never seen it take so long for the contrast to move through the small bowels so I don’t take that as a good sign. The challenge is that there is no reliable way to know what the blockage is caused by. The good news is that the radiologist said it was not characteristic of a tumor, but rather it was likely due to adhesions. He said there were several strictures that were causing the slow mobility. Most likely I will have to be very careful about my diet for a while to avoid another complete blockage while trying to get enough calories to bring my weight back up.

The main thing is that we want to get back to chemotherapy soon. I have been through the whole circle of standard therapies for metastasized colorectal cancer, so the last two treatments I have been on were somewhat experimental and unfortunately neither was really impressive in how effective they were. However, there are still many options out there and the medical community continues to evolve these treatments at an unprecedented rate. There is much to be hopeful about for my progress in 2011. The brain tumor and hip tumor seem very stable. The most troubling tumors are the ones in my lungs, but like I mentioned, I still have healthy lung tissue. It seems the struggles over the past several months have been mainly due to maintaining my body after four years of ongoing cancer treatments.

We were blessed to have a wonderful Christmas this year. I am very glad for my savior Jesus Christ and we had an excellent celebration of His birth. Despite all of the adversity we face in life, the joy of being a Christian is an inexhaustible flame.

Results from recent treatments

I wanted to give everyone an update on my treatment. We just finished a 9-week treatment with Abraxane and Avastin. Abraxane is a drug the was originally developed from breast cancer but has shown incidental evidence that it is effective with metastatic colon cancer. Also, the biopsy had some markers that gave us reasons to believe Abraxane would work well.

The recent PET/CT scan showed a slight progression of the disease. My oncologist is recommending that we look to clinical trials because we have basically tried all of the current standard chemotherapy options. He is doing some research into the options and we meet again on Thursday.

Overall this has been a rough year as we have had quite a few new tumors and a significant progression of the disease. My hip pain has returned and I need to be on around the clock pain medicine. The good news is that there are still no signs of metastasis in the liver, and the brain tumor continues to shrink from the radiation treatment.

I continue to pray that it is God's will to heal me. Thank you everyone for your continued support and prayers.

Radiation Treatment Update

I have three days left for the radiation treatment. It has been a rough ride, but seems to be going well. I started having speech problems again, so my Radiation Oncologist put me back on steroids. He believes it is normal swelling due to the brain radiation I had in February. I really don't like steroids, but I am almost half way through the 4-week steroid period. They taper off each week, so each week should get easier.

The good news is that my hip and leg pain is gone. This means the radiation is working (and the steroids probably are helping too). So I stopped my pain medication last week. This has been a rough experience I wasn't expecting. I was on the Oxycodone around the clock for about 3 months, so my brain has some recalibrating to do.

I expect I will be feeling a lot better in a couple of weeks. Being a long term cancer patient has a lot of up and downs. I have tried to develop a resilient attitude--you will get knocked down and you just back up again. I've been through some very rough bouts and I bounce back each time.

The next PET scan will be in about 6 weeks. I am a bit concerned about the lesions in my lungs because the chemotherapy has been light this summer. I haven't had Avastin for a while, and I am off the Temodar while we are doing the radiation. So the cancer fighting drugs are just Xeloda and DCA. Hopefully with the new scan we will not find anything new.

I think the plan is to start on a new chemo regiment the week of August 9th. Thank you everyone for your continued encouragement and support.

New Radiation Therapy

Today I started a new round of radiation therapy. We discovered a new tumor just above my left hip joint. The biopsy from a week and a half ago confirmed that it was malignant. The history of pain goes back to February and because of this we were pretty confident that it was malignant before we did the biopsy. We even started the planning process for the radiation before the biopsy because we were so sure. The pain is distinctly different from any other pain I have had before, so I was sure it wasn't a muscle injury or infection. The tumor is growing into the nerve structure that goes to the leg, so I experience some shooting pains in my leg. I am also experiencing some instability in my left leg and some numbness in my left foot. I am glad we started the radiation because it should help the pain considerably. I am on some serious pain medication called oxycodone, which is a opiate narcotic.

The radiation is an 18 day treatment (everyday M-F). It is a new technology called IMRT which wasn't even available three years ago when I received radiation therapy on my colon. The technology allows for a very precise targeting of the tumor and can be directed around specific structures like the rectum. It is amazing what they can do these days.

Thank you everyone for your support. We are looking forward to a vacation after I have recovered from the radiation treatment.

Scan Results

I got the results from yesterday's scans. Overall I think it is good news, but I was optimistic the results would be better. As far of the CT scan of the tumors in my lungs, they have remained stable for the most part. There is one in my lungs that has grown slightly, but there is also one in a lymph node that has shrunk. An important consideration is that the previous scan we are comparing the results to was from January 20th, and during that time the tumors were in a state of growth. We did not start treatment for a month later, so a considerable portion of the time since the last scan we would expect the tumors to grow. We have only been through 2 cycles of the Temodar and 1 and 1/2 cycles of the experimental drug from Canada. So when we take this all into consideration, I think the results are good.

As far as the MRI, I am not sure how to read the results. The brain tumor has shrunk from 1.6 cm to 1.1 cm, so I think this is good. However, my radiology oncologist said he did not expect it to change in size during this period. Perhaps this is good news. I meet with him next Friday, so I should have more insight then.

Thank you everyone for the prayers and support. This last week has been rough. I think the steroids are out of my system, and despite all of the negative effects they had on me, I think they did improve my tolerance to the side effects of the chemo. I have three more days in this chemo cycle, so things should improve next week.

It looks like I am going to have my next MRI and CT scan the week of April 5th. So we will find out how this treatment is going that week.

Protocol "Sasquatch" Starts Today!

Today I start the new salvo of experiment chemo and treatments for the cancer. I am the single participant in this combination of drugs, and I have dubbed the protocol "Sasquatch". It includes Avastin, Xeloda, Temodar and an experimental drug from Canada, a long with like a dozen other supplements. Wish me luck!

Radiotherapy Surgery Scheduled

I am scheduled for the SRS procedure to have the brain tumor zapped from my head on Friday at 1:15. Jackie has already submitted her wish list of mental changes that may result from the procedure in hopes that I come out with a sudden comprehension of plumbing skills. I am hoping for the more classical super-powers that the comic books have proven are possible when you target your brain with large doses of radiation. At the top of my list is to have my brain be suddenly WiFi compatible so I could just upload my thoughts whenever I walk through a hotspot. Hopefully it wouldn't be a superpower that becomes obsolete in 5 years after the technology changes.

Actually, my biggest issue is that I have an overactive compulsion for pontificating, but with a feeble grasp of words and stuff. Maybe they can fix that too.

On a serious note, thank you for all of the prayers and support everyone. This week has been an amazing blessing because God has shown me lots of love through the people around me.

TalkException thrown at Brain.yak (Brain.java:59395)

Unfortunately, we have some bad news today. For the past week I have been noticing some problems with my speech. I had trouble getting words to come out, and when I did, they were sometimes slurred or incoherent. I had to really concentrate to speak fluidly. It has certainly been a situation that is much more noticeable for me than people listening to me. If you know about the condition, you can probably notice it, but most people off the street probably won't recognize the problem. It's not like, wow what happened to Andy, is he speaking Klingon?

So I went in for a MRI this morning and sure enough there is a nickel sized tumor in the left hemisphere. I believe the speaking difficulty is due to a condition called apraxia (as opposed to dysarthria). It is damage to the location of the brain called Broca'a area (the area highlighted red in the image).

Fortunately, the treatment path seems pretty optimistic. We will use a procedure called stereotactic radiotherapy (or SRS) to kill it with large doses of radiation. There are risks associated with it, such as additional impairment to speech and other motor skills, however, the success rate is pretty good. The radiation requires a single session and then I will be on steroids for several months afterward. We should be able to continue the chemotherapy in conjunction with this treatment.

I thank God that this tumor is not in a region of the brain responsible for cognition, memory or emotion. I look forward to all of the opportunities for self deprecation because I am having trouble saying something. There is nothing better to resolve a challenging situation by seeing the humor in it. It's not like I have been a vocabulary wizard before now. It is time to open up the Andyism journal again Erin.

I feel like this cancer is old adversary now. It is a devil that I have been fighting for years now, and it has certainly taxed me. One day I may feel exasperated, but fortunately, the next day God fills me with vigor and I ready to fight again. This attack on my brain feels much more threatening than the lungs or colon. It is getting close to the gateway to my soul. However, we have a counter attack planned that I believe will sever the legs from this cancer and send it on its back. The two new drugs that we are already initiating have both shown some success in brain tumors--there are many drugs that won't work with those tumors because the molecules aren't small enough to penetrate to the tumor when it is lodged in the brain. But not these little weapons. This gives me confidence that we will reduce the likelihood that we will see another tumor form so easily in the brain.

I have already received a ton of encouragement from people offering their prayers and that is so awesome. You guys are a real blessing. I have faith that God respects our prayers to Him.

Also, the doctors and nurses at UMC have been nothing short of amazing through this whole process. I have so much respect for people that choose a profession to help those of us that get this awful disease.

The title of this post is a shout out to all my nerdy programming buddies.

EDIT:: I had to edit the post... the first time I wrote it I said, "a ton of encouragement of people offering their brains and that is so awesome". I thought that was pretty funny and wanted to make a note of it.

New Therapy

I am getting ready to start the new treatment plan. The plan includes Avastin and Xeloda, two of the drugs that I was on previously, and we are adding a new one called Temodar. Temodar is a chemo agent that is typically used with brain cancer, but my oncologist believes that there is a decent likelihood that it will work well with my cancer. The current plan is to start this treatment next Friday, the 12th.

In addition, we have decided to try out an experimental drug. This drug is not permitted by the FDA for cancer treatment here in the US, so my Dad and I are flying to Toronto next week to start the therapy. We plan on taking it in parallel with the other chemotherapies (Avastin/Xeloda/Temodar).

Please pray that I do not encounter any problematic side effects or drug interactions. We are concerned about unknown risks because there is not very much data on these drugs. This is the fifth or sixth different regiment that we are trying in the past three years. Let's hope this is successful in shrinking the tumors and putting me into remission.

Minor Setback

I got the results to my latest CT scan today. As expected the cancer has advanced slightly since the last scan three months ago. Most of the lesions have grown by several millimeters with the largest being in one of my lymph nodes (3.5 cm across). The drug Avastin seems to have held the cancer in check, but because of my blood pressure, I have been unable to get it since Thanksgiving. I am on three different blood pressure medicines and it looks like we have my blood pressure under control now. We should have a better understanding of the current situation tomorrow after we meet with my doctor. My hope is that we will be able to resume the Avastin tomorrow. I am also going to inquire about targeted radiation treatments for some of the larger lesions. Hopefully we can stabilize the tumors again and hold out for a better treatment option.

Blood Pressure Pressure

My treatments were going very well, but unfortunately we had to stop the Avastin, which is the primary drug that seem to stabilize the tumors. One of the common side effects of Avastin is high blood pressure, and mine went pretty crazy for a while. It was up around 170/115 for several weeks. We have been able to bring it down quite a bit with a salvo of three different hypertension medicines, but my doctor would like to hold off three more weeks before we do another Avastin infusion. In the meantime, I am still doing the Mitomycin and Xeloda. The last Avastin treatment was around Thanksgiving. I am a little nervous about the next CT scan because I have been off the Avastin for a while. The scan is scheduled for Friday 1/22.

13 Year Anniversary

Today Jackie and I celebrate our 13th year anniversary. Here is a compilation video I made for her of our 17 years together. I originally made it for a digital picture frame, but it was easy to upload to the Internet, so here it is. I love you hunny.

CT Scan Results

I got the results from yesterday's CT scan today. It has been 12 weeks since the previous scan and we have been doing a new treatment with Mitomycin, Xeloda and Avastin. The new treatment appears to have stabilized most of the tumor growth. Each of the tumors that we are aware of either had minimal change or had a slight increase in size (with one exception). This is good news considering the amount of growth we had the last treatment cycle. Also, there are no new nodules that have popped up, which is good. All of the known metastases appears to be in the lungs and surrounding lymph nodes. Avastin is not considered a cure for cancer and its purpose is to contain the growth, which it looks like it is doing. Here are the old and new dimensions of the tumors that we are tracking (all measurements are in centimeters):

1.5 x 1.5 -> 1.6 x 1.2 (15% reduction)
1.2 x 1.1 -> 1.5 x 1.3 (47% growth)
1.0 x 0.7 -> 1.0 x 0.8 (14% growth)
1.3 x 1.1 -> 1.4 x 1.2 (1% growth)
2.6 x 2.1 -> 2.8 x 2.3 (18% growth)

I will meet with my oncologist next Thursday to discuss these results and decide if we will stay with this treatment or pursue a different treatment.

Man's Search for Meaning

I have been reading a book that has had a profound impact on me. It is a fairly well known book called Man's Search for Meaning, by Victor Frankl. Frankl is a psychologist who survived the Nazi concentration camps. My battle against cancer is nothing compared to what these souls had to go through. They were pushed to the edge of their humanity, and in this we can see what humanity really is. Here is a great quote from the book:

“We have come to know man as he really is. After all, man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those gas chambers upright, with the Lord's prayer or the Shema Yisrael on his lips.”

I have told several people that this past year has been the happiest of my life despite the physical challenges that go along with an ongoing chemotherapy. When people inquire about this, I usually tell them it is because people are really nice to you when you have cancer. However, I think Frankl has helped illuminate some deeper reasons for this. His thesis is that meaning is the greatest driver in our lives not the pleasure/pain system that Freud argued. We can endure great suffering if we see purpose in it. Early on in my diagnosis God made something clear to me. My cancer is not all about me. There are people close to me that He is working on. I draw tremendous purpose from this.

To paraphrase Frankl, this is one of my favorite ideas of his: It is not what you expect out of life that is important, but rather what life expects out of you. As a stage 4 cancer fighter, this speaks volumes to me. I have been forced to move towards this perspective because of my cancer, and I find that it comes with much greater joy. If we measure our life based on our expectations we will almost always be disappointed and left unhappy. If we cherish the purposes life gives us, and drive our lives around those purposes, we will find joy. I have a long ways to go before I can come close to filling life's expectations but it is a road that I want to try to follow. Right now I believe God wants me to fight this cancer and that is what I plan on doing!

Not so great news

I found out today that my CT-scan wasn't too great. We wanted to see how effective the treatment has been over the past 3-4 months. Unfortunately, the tumors in my lungs grew 60-75%. The largest one is 1.5 cm across, which is still relatively small. I meet with my oncologist next Wednesday, so we will come up with a plan moving forward then. They may want me to get a PET scan before then to get more information.

Thanks everyone for their support. I spent the drive home after the news singing praises and it really helped. God will comfort us when we ask him to. I am confident we will get things going the right direction this next treatment cycle. I will let everyone know what the plan is once I find out.

Update on my treatment

I had a scary experience on Friday when I had an allergic reaction to Oxaliplatin, one of the chemo drugs I am on. All I can say is that the nurses at the University cancer clinic are amazing and they handled the situation perfectly. When I realized I was having a bad reaction, I pulled the emergency cord and within 10 seconds I was surrounded by nurses taking control of the situation. They loaded me up with steroids, adrenaline, benadryl, and ativan and shipped me off to the UMC trauma ER. Thanks to them everything ended up okay. I can't say enough about how great they are at the Cancer Clinic!

This has definitely been a rough go with the chemotherapy over the past 6 weeks. I have had considerably more colorectal pain and fatigue than the past treatments. On the upside we are hopeful this treatment path is going to hit the cancer pretty hard. The negative reaction to the oxaliplatin is unfortunate because we felt that was an effective drug and I will not be able to get it anymore.

I tried playing basketball on Wednesday with my company's city league team. That was truly a humbling and frustrating experience. The oxaliplatin really messes with my coordination and I was having trouble just catching the ball. I was all over the place. I was happy that my brother played with us because he was clearly the best player on the court. That helped offset the fact that I was the worst.

Tonight I am in a great mood. I made my favorite meal for dinner--a bowtie pasta made with sundried tomatoes, roasted red peppers, garlic, onions, turkey sausage and goat cheese--and watched the Wildcats make their 25th straight NCAA tourney.

Thank you everyone for supporting us as we continue this fight against cancer. We have had awesome meals given to us from our friends at church and we greatly appreciate it. We love you guys!

New Treatment Plan

After a 7 week break I am going back into chemotherapy tomorrow. We are going with a new combination of chemo agents based on what we know from previous treatments (this one will be the forth run). The salvo includes Xeloda, Erbitux and Oxaliplatin.

Part of me is relieved because being off of chemo gave me quite a bit of anxiety. This regimen will probably be rougher than the last one but that is ok because my oncologist believes it will be more effective. For me, the big take away from my appointment yesterday is that my oncologist feels confident that we can control the disease based on the characteristics it has presented to us up until now. He said there are many new treatments on the horizon to look forward to and our goal right now is to keep the cancer at bay.

Taking a break

In my last oncology appointment, we decided to take the break from chemo early, but instead of 3 months, we are going to take 6 weeks off. I am half way through the break and feeling a lot better, although I do admit being off of chemo stresses me out. We are going to do another scan in a couple weeks and see where we are at. If the nodules in my lungs have not grown, we will most likely take more time off. Otherwise, we will go back into treatment, and most likely we will switch to a different chemo protocol.

We had a terrific holiday season and are looking forward to 2009. Sydney and I both have colds and school starts up again for Jackie and the kids tomorrow. I have been spending most of my time working, writing, cooking and spending time with the family.

God and Poker

I don't have any new information about the treatment, so I decided to post some ramblings I have had about God and faith. Today the final table for the World Series of Poker's main event meets on ESPN. It's the perfect time to use a poker analogy for Christian theology.

I would like to talk about a topic that came up in last night's Bible study. We are often told that we ought to make God the priority in our lives. But really, what does that mean? Does it mean that we should abandon card games and family vacations in favor of excluding ourselves in a Monastary for around the clock worship and prayer? I do not think so.

On Sunday night we had our weekly poker night. Early in the game I was playing very poorly and making bad decisions. I was pushing when I shouldn't be, not taking advantage of strong positions and loosing chips quickly. One time I even folded the best hand because I wasn't focused enough to see the straight draw I hit. One of the excellent poker players there, Sean, was not in the game and sat down behind me to watch. As a courtesy, I showed him my cards each hand so that the game could be more interesting to him.

From that point on, my game play improved considerably. I started making smart decisions. It occurred to me that each hand I was considering what Sean must be thinking and I did not want to exhibit any poor judgment on my part. All he was doing was just sitting there, but still, I was benefiting from it. I ended up winning the tournament.

As we go about our lives, making decisions as we go, we should be sure to show our hand to God as often as we can. We are prone to making poor decisions due to impatience, irritability and selfishness. The best thing we can do to avoid these bad choices is to expose our situation to God. It's not that God doesn't already know what our hand is, but it forces us to consider God in our decision. We are often faced with difficult decisions, and when it comes down to it, we almost always know what the right choice is, if we are only willing to consider it.

I believe this is what it means to make God the priority in our lives. It is to know that He is always sitting behind us and that we should give Him the consideration of showing Him our hand, regardless of what cards we are dealt in life.

Treatment plan going forward

The meeting with my oncologist confirmed my initial thoughts about the latest report. She would like to continue with the current treatment for 3 more cycles (9-weeks), and then take a 3 month break (assuming we are not surprised by the next set of scans). That means I will be off of chemo for the first quarter next year and I will most likely start up again after NCAA basketball season. This means I will certainly be in LA for the PAC-10 tournament, which of course, is very important.

In the back of her mind she is concerned that the "nodules" in my lungs are not malignant, but rather scar tissue from being in the hospital. The nodules are of a size and location that we cannot reliably get a biopsy. I am fairly confident we are dealing with cancer, however, based on the last time I went off of chemo. During my previous treatment with Folfox, the nodules shrunk to about half in size. Then in the next three months we saw these nodules double is size again. This makes me very suspicious.

This photograph is from my good friend Aaron A.

Stable in size and number

We got the report back for the latest CT scan, and it says "There are numerous small pulmonary nodules identified, stable in size and number from the previous exam." So there we have it, nothing really exciting. What this basically means to me is that this particular treatment is working in the sense that the disease is not growing or spreading, however, it is not going to be the treatment that cures me.

It is possible that the cancer will build an immunity to the treatment and will start growing again, however, the doctors cannot predict if and when this will happen. It could be two months or ten years. The important thing is that there is a ton of new treatments being researched, and as my nurse practitioner has said, we just need to hold things at bay until a cure is available. We will meet again on Tuesday and decide if we stay the current course or make a change.

Thanks again for everyone who is supporting us. We thank God for giving us all of the friends and family we have for helping us through this.

CT Scan Tomorrow

Tomorrow I get my next CT scan to see how the treatment has been working. It has been 11 weeks since we started this new treatment plan with both Erbitux and Irinotecan. I'm very hopeful that it will prove effective as I seem to be tolerating it better than previous treatments. I should get the radiologists report on Thursday.

New Chemotherapy

We have had some very good news since my last treatment. I finally got back the results of a genetic test that indicates I should be responsive to Cetuximab. The testing looked for a mutation that would make Cetuximab ineffective and it turns out I do not have it. This is very good news because people that have this mutation tend not to respond well to any chemotherapy.

I am at the Arizona Cancer Clinic right now getting infused with the new treatment. Today is the first day I am getting the Cetuximab. The main side effect has to do with skin rashes that should develop in the next week.

Last week I had a CT scan to see how well I was responding to the Irinotecan treatment. The results were neither great nor terrible. It appears the treatment I have been having has minimized the cancer growth. Hopefully, the addition of Cetuximab will cause the tumors to start shrinking.

The picture above is taken by Aaron A., a good friend at work. It was taken somewhere in southern Arizona; you would have to ask Aaron exactly where.

I am going in for another treatment tomorrow. I am doing a lot better than last week and I think I now have a stronger sense of purpose.

We are still waiting on some genetic testing results to see if the anti-body Cetuximab will be helpful. It has taken nearly 4 weeks now. We are very hopeful the results show that it will because it can be a very effective drug. Until then, I am only receiving Irinotecan.

Thoughts on Tony Snow

I've been pretty depressed the last few days. Over the past few months I think my attitude has been really positive, but things have been tougher this week. I think it started when I found out about Tony Snow. He always seemed so positive and upbeat regarding his battle with colon cancer and his passing hit me hard. I have a ton of respect for Tony and truly admire who he was. Today is the ceremony celebrating his life and my prayers go to his family.

Most Internet sites show 12-18 month survival rate for stage IV colon cancer is pretty typical. I have had myself convinced that those statistics do not take into account today's more advanced treatments, but Tony's survival time is consistent with the 12-18 months. I have this strong temptation to question my own belief that I can survive this and I am trying with all my might to squash that temptation.

I have read that Tony actually died from an infection in his lungs. I can see why the oncologists are always so concerned about white-blood cell counts as it is obvious these infections can be very dangerous if the body's immunity is crippled. Last spring I was hospitalized for neutropenic colitis which is an infection of the colon that is often fatal. Fortunately, I was able to recover from that and continue treatment.

The thought of death does not terrify me like it used to. Everyone moves on, it is just a matter of when it happens. As Tony has said, faith takes on a whole new meaning when one walks through the valley of the shadow of death. Faith becomes everything and the promise of ever lasting life becomes a cradle of solace.

Thanks to my friends and family, the quality of my life has been exceptional and even if things do not go well for me over the next few years, I would not trade it for a lesser one that happens to be twice as long. The thing that upsets me the most is the thought of Sydney and Josh not having a Dad and Jackie not having a husband. God has placed me in charge of raising those kids and I pray that I am not taken home until that duty is finished.

The best I can do is continue to fight this with every resource and bit of strength God gives me. We must continue to be analytical and proactive and we must continue to take on a fighting spirit. God has given me sharp claws and I plan on using them.

Unfortunately, I did not qualify for the clinical trial. Turns out my tumors are not large enough (oh darn). They have me on one of the drugs in the trial (Irinotecan) and will introduce another drug the week after next. I haven't heard which one it is, but was told it would be an anti-body such as Cetuximab.

So far the side effects aren't terrible, but they aren't great either. There is more nausea this time around, but all around, I am a lot healthier than last time around which is good.

I am really happy with my oncology team at UMC. They are the greatest! I think oncology nurses are just about the nicest people there are. The Cancer Clinic has an excellent culture for what they do.

Tu Nidito

The Tucson Citizen did an article on the support group we go to at Tu Nidito. Josh got his picture in the paper -- although they got Josh and Sydney's ages wrong (Josh is 4 and Sydney is 6).

We normally meet every other week, although we have the summer off now and don't go back until August. Both of the kids love it there.
http://www.tucsoncitizen.com/daily/frontpage/88445.php

Back to Treatment

In the past couple of weeks I have had a CT scan and a PET scan. These exams have shown significant evidence that the cancer has spread to my lungs which means the cancer has advanced to stage IV. The nodules we have been tracking since September showed up on the PET scan. The good news is that the new tumors are less than 1 centimeter in size and we have seen that my previous chemotherapy was working against them.

The current plan is for me to go back into chemotherapy on Tuesday next week (6/10/08). I am considering to participate in a clinical study at the University of Arizona for stage IV colorectal cancer patients. The study involves a new experimental drug called Enzastaurin in combination with the drugs Irinotecan and Cetuximab. It is very sobering to acknowledge the main thing they are looking at with this clinical study is the survival rates of the participants.

After recovering several months from the previous cycle of treatments I am feeling pretty good and it is disappointing to have to go back to treatment. I continue on focusing my energy on maintaining a positive outlook, not feeling sorry for myself and asking God to fill me with courage.

The force is strong with this one!

After getting back from Disney World, we had a birthday party for Sydney and Josh. Both of my kids are Star Wars fanatics and so we had a Star Wars theme.

One of the hilights of the Disney World trip was the Jedi Training that Josh was fortunate to participate in at Hollywood Studios. During the training he had the opportunity to duel with Darth Vader. I borrowed this idea for the birthday party and dressed up like Darth Vader during part of the party. Each of the kids at the party had the chance to engage in a light saber battle with me. It was a lot of fun for the kids and even more fun for me!

Notice Sydney in the background of this picture demonstrating the proper light saber stance. She has excellent balance and a nice low center of gravity. I am so proud!

Trip to Disney World

Last month my parents surprised us with a trip to Disney World to celebrate the completion of the last phase of treatment. The trip included my family, my brother's family and my parents.

Coincidently, my cousin Russ and his family was going to be in Orlando the same week and they were booked to stay at the same hotel. Because everyone was planning to be there, my Aunt Christine (Russ's mother) and her boyfriend decided to make the trip out there and join in the fun. We had a huge group and it was a blast.

While we were in Disney World we had the opportunity to celebrate three birthdays! My daughter Sydney's birthday was May 1st, my father's birthday was May 2nd and my son Josh's birthday was May 3rd.

I have finished this phase of chemo treatment. My oncologist did not believe that I would benefit right now by maintenance pills. He says the priority right now is to heal and recover from the chemo treatments. Things seem to be improving day by day, as my fatigue is less and less each day.

In May I will get a follow-up CT scan to see if the nodules on my lungs have changed. This should give my oncologist more information as to whether they are veins, scar tissue or metastasized cancer. I am also getting a colonoscopy and seeing my surgeon for the first time in over six months.

Last week was a wake-up call for how out of shape I am. I have lost a lot of muscle mass this past year. I went out to pull weeds and a half hour into it my legs were trembling from fatigue. Then, two days later I set out to run 1 mile. As a former cross-country runner, I was surprised at how difficult this was. Less than half way into it I had to stop. I need to get back into shape and as someone with little patience, I don't expect it to be easy.

One more session

I have one more treatment on Wednesday the 19th. The oncologist felt I should have one more treatment after the last one. After that, we will do another scan in two weeks. I suppose that we will then decide whether I go into remission, or if I go back into treatment.

I am still not getting along with my colon; we have a very strained relationship! Hopefully that will be improved over time.

Chemo Treatment Update

I have now been off the TPN for about 2 months. Things are going pretty well, but the side effects of the treatments are getting a bit worse. I have lost about 25 pounds since getting off the TPN, but my weight seems to have stabilized for now.

The good news is that my eating has improved considerably over the past two weeks. It used to be I would get distended and bloated about every day, but now I can eat more foods and not get distended. I think this is partly due to the digestive enzymes I am now taking and it seems to indicate that my previous digestion problems were not due to a partial blockage in the intestines (yeah!).

I am now on two chemo medicines: 5FU and Oxiliplatin. The original treatment plan was to have 8 treatments, every other week. But since we did 4 treatments of just the 5FU, I suspect they will want to do 12 total (to get 8 treatments with the oxili). If this is true, then I should be disconnected from my last chemo on Valentines Day and be over the side effects early march.

The picture is Jackie and Syd at a UofA basketball game. I am very happy basketball season is back, although sad that Lute will not be back this season. Kevin O'Neil has done an excellent job so far taking over the reigns and I think we will still have an excellent season. Go cats!

The Joy of Eating

Great news! I have finally been weened off the I/V nutrition (the TPN). I am now entirely dependent on eating for my nutrition. I was on the TPN for nearly 5 months, and most of that time I could not eat anything. Last week when I saw my oncologists I told them I was getting chubby, and who wouldn't when getting 3500 calories from the TPN, and probably another 1000 from eating.

I am still not eating as much as I used to, but I am doing pretty well. I have to settle for bland foods that are easy to digest, like potatoes, eggs, and breads. I seem to do ok with lean meats as well, particularly fish. I think it will take a while for things to get back to normal in the eating department, but right now I am just happy to be able to eat again. When I couldn't eat in the hospital I was always thinking about food and watching any cooking show I could find. With this newly earned knowledge, I am looking forward to a cooking hobby (I just need some experience)!

I truly believe that eating is one of the great joys that God has given us. But, like the other joys we are given, it is something that requires temperance. Most of my life I have had a horrible diet because I had the advantage of never gaining weight (I have alway been skinny). I ate red meat and fried food all of the time and only occasionally had a good serving of fruit or veggies. There are 101 ways we can be blind sighted by a serious health problem that stems from a poor diet, and I believe my cancer is one. I encourage everyone to enjoy their food, but eat healthy--it is worth it. I believe the best thing we can do is have 5 servings of fruits and vegetables a day, and everything else in moderation.

PET Scan Results

I had a PET scan on Friday last week and we are happy to find out the report shows no visible signs of malignancy. This is terrific news since the last PET scan was the beginning of January this year. It is possible there are still "micro-tumors" that are too small for the scan to pick up, but that is why we are doing the chemo.

After a frustrating month of not seeing very much improvement with my belly, I am happy to say that things seem to be progressing now. My distention is down considerably and I have successfully been eating baby food without any discomfort. Last night I had a few bites of Jackie's ground turkey concoction and so far that seems to be going ok as well.

Back to the offensive

I started chemotherapy again yesterday. Right now they have me on the 5FU which comes in the little pack with a portable pump. It is set for a 46 hour infusion, so I will have it taken off tomorrow. So far I seem to be tolerating it pretty well, although it has made me a little bit nauseous. Also, it is a bit cumbersome to get around at night because now I have two portal pumps to lug around (the TPN and the chemo).

Thank you everyone for your continued prayer and support.

Visit from Lute

Coach Olson visited me while I was in the hospital and it was a great experience. We were able to talk about the upcoming season and how all of the players are doing. He is an amazing person and I am very happy that he took the time to come and see me. Thanks to all of those who arranged the visit.

Home at Last!

After a 15 week stay at the hospital, I am finally home! My original surgery was on May 10th and I was finally discharged August 27th. We believed the original surgery went very well, and I actually made it home for a day and a half in May after I was successfully able to eat on my own. However, a severe pain developed in my stomach, and I was soon in the ER after a considerable amount of prodding from my wife and dad (I didn't want to go). Since then I have had three more surgeries to try and get rid of blockages that have developed in my small intestines.

Unfortunately, the plumbing is still not working after the forth surgery and I still cannot eat anything. My surgeon decided that we should not do another surgery in the near future because we do not know if it is a mechanical problem (like a physical blockage), or a functional problem (the bowels are stunned and have not "woken up" yet. Because of this, the doctors decided their is no reason to keep me in the hospital and I now have a I/V nutrition system (called a TPN -- Total Parenteral Nutrition) that we can administer ourselves. I am in quite a bit of discomfort because my stomach is very distended. If this does not improve soon, we will probably put a tube into my stomach that we can use to drain fluid and decompress my stomach. This will be a bit of an inconvenience, but I would be a lot more comfortable and be able to do more things. Right now I am a bit limited in what I can do.

Currently, the priority is to get going with the chemotherapy again, which will I start tomorrow. It is a bit concerning because I am several months behind the original schedule on getting the chemo going, and the pathology report from the surgery indicated the cancer was of an aggressive variety. Of the 18 lymph nodes that were removed, 17 of them showed evidence of metastasis. We are going to change the original treatment plan, as my oncologist does not want to give me the full blast of chemo while I am not 100%.

My nursing staff at TMC was terrific. We got to know each other really well over the past 4 months and they took very good care of me. The picture above is the nursing staff that was there on the day I was discharged.

Ready for the Attack

We are two days away from the massive attack on the tumor. It will be a huge step to finally get that thing out of my body. We are very anxious to get the surgery behind us. It is scheduled at 7:30 am on Thursday, which means I will need to be at the hospital at 5:30 for the prep.

On Sunday I was baptized at Catalina Foothills Church and I am thankful that the pastor gave me an opportunity to testify my faith in Christ. Following the baptism, he asked for everyones' prayer for the surgery this week. We are very thankful that God has given us so much support during this time.

Lego Land

Last week we took the kids to Lego Land in San Diego. Of course, I am a major lego-geek and I just really wanted to go there for myself. Fortunately, the kids had a blast there too.

The park is really great for younger kids. We could all go on most of the rides and there were quite a few activity-based attractions for the kids where Jackie and I could kick back while the kids play. And the Lego models there are outstanding. Anyone out there who has spent a good part of their childhood building things out of Legos should have a real appreciation for them.

We truly had a special time together on that trip. We all stayed in a hotel room with two queen beds and it was a lot of fun--it was basically a sleep over with our kids. God has blessed Jackie and I with wonderful children.

Cabin Trip

This last weekend my co-workers and my brother surprised me with a cabin trip up in the white mountains. It was a real blessing to have this fellowship before the surgery and I was very happy to go. We did lots of manly things like shooting guns, playing poker, eating steak and sleeping in. Fun was had by all!

I was here first ...

It has been nearly four weeks since the radiation treatment ended and I am feeling pretty darn good. My symptoms are gone and my energy level is strong. I am now up to 175 pounds, which I am excited to say is more than I have weighed since about a year ago.

One of the things I am doing now is lifting weights to try and gain strength before the surgery. I think it is good for me because I can use it as an opportunity to cultivate and focus my aggression towards the disease. One of the temptations I often feel is a passiveness with the cancer. Even though I am feeling good, I do not want to let my guard down. I am still in a fight, and I must remember it is a fight in which there are no negotiations, no treaties, no cooperation and no coexistence. There is no letting up until the extinction of the disease. After all, I was here first.

Surgery Scheduled

It looks like the surgery is scheduled for Thursday, May 10th at TMC.

Things are going very well with the recovery. I feel like 90%, most of my symptoms are gone, and I have a lot more energy. We met with the surgeon this morning and he was happy with our progress. We are scheduling the surgery this week, so we should know exactly when it is in a few days. Our best guess is that it will be the first week or two of May.

Phase I Complete!

Today I had the chemo pack removed and I am officially done with phase I of the treatment. We celebrated tonight by going to Fuddruckers. The next step is surgery, which should happen in 4-5 weeks. I am meeting the surgeon Monday, April 2nd.

Overall I am feeling better than I expected to at this point. I am in some discomfort but it is certainly tolerable. The main thing is the fatigue, but that should start going away in the next two weeks.

Thank you everyone for all the wonderful support! It is a real blessing to have so many great friends and family around us. Jackie has been a real superhero through this process and I owe so much to her.

The Attack Resumes

After a short setback with the intestinal infection, the treatment has resumed! We started radiation treatment again last Wednesday (2/28) and we will resume the chemotherapy this Wednesday (3/7). My radiation oncologist was not sure what the effect of having a week off of the radiation therapy in terms of the effectiveness of the treatment. There is not enough data to know. On the good side the cancer was probably hit pretty hard from the chemotherapy since I was, so we should believe the treatment has packed a good punch so far. On the down side it is not desirable to delay the radiation treatment for a week. My doctor says after everything is considered, the upside and downside probably cancel each other out.

As of right now I have two and half weeks of treatment remaining, which means we should have the last session on Tuesday March 20th. This would place the surgery at the third or forth week of April.

Gift of Grandparents

With the cuts and bruises we get through life,
we need courage and devotion to get through the strife.
These things come from parents who raise with love,
their children who learn everything from above.
We are given the tools to wreck and divide,
the souls around us who share the same ride.
God blesses us in such miraculous ways,
to instead give us parents who filled ours each day.

From mother to daughter to son and on,
the tradition of love must be carried along.
When the weather is rough and the tides rise high,
together we stand with hands clenched on all sides.
The ship we have built is robust and stable,
passed from generation to generation as long as we are able.
God gives us strength in so many ways,
this ship is one that will sail on, God be praised.

Dedicated to my grandmother Anna Rutherford on her 90th birthday.

Back Home

Well, it's good to be home. I was discharged from the hospital yesterday morning after a 5 night get away that resulted from an infection that developed in my intestines. Overall I feel pretty good and there is no more pain in my stomach which is really good. The doctor's seemed very happy about how quickly I was able to heal and I am trying to rest as much as possible so I can start up on the treatment again. Thank you everyone for your prayers and support this past week!

I am glad to see my kids again. We did not want to have them visit me because we were in the bone-marrow transplant area of the hospital so it was a real pleasure to come home to them. They are very cute! When Jackie went to the store last night she was going to take the kids with her but Sydney wanted to stay home to make sure that I wasn't alone. She is a very caring soul for a 4 year old!

Right now I am a bit concerned about the loss in weight. This morning I weighed 157 lbs, which is down 12 pounds from when I started treatment. I am going to continue to focus on weight gain, although it will be more difficult now that I have a pretty strict diet.

The next step is find out when I can start treatment again. They have told me that it could be as early as Wednesday and as late as next Monday (3/5). I am hoping it can be sooner than later as I want to minimize the impact of this last week on the overall treatment.

Band of Brothers

The people at my work did a very cool thing today. They handed out wrist bands with "Band of Brothers" written on them for everyone to wear. I am so incredibly lucky to be working at Ephibian and having the support that I get from everyone there.

Also, I decided to clip the hair. I now look just like my cousin Brad. Jackie and I both agreed that my hair was thinning on top, but the real reason I did it is for the ease of maintenance. The patch I have on my collar bone (where the port is) can't get wet, which means washing my hair can be a bit of a challenge. So now I can just use a wash cloth!

After three days of treatment, all is well. I have become used to this portable pump that I am carrying and it really isn't much of a bother. The chemotherapy makes me feel kind of icky, but it isn't too bad. The main side effects that I have noticed so far are the nausea and stomach cramping. The nausea was the worst the day after the treatment and I haven't had too much of a problem with it since. I have also had a bit of fatigue in the evening time.

The radiation treatment is quick and easy. It only takes 5 to 10 minutes once they have me aligned. They have me lie down on this bench and then adjust me until my three tattoos line up with these three lasers. Then they all evacuate the room and the radiation machine spins around me and zaps me from four different directions (top, bottom, left and right). There are 28 days of this treatment which means I am due to have my last treatment on March 9th.

Send the troops in!

I started both the chemo and the radiation today. I found out when I was at the clinic getting my chemo that I had an appointment at 4:30 at radiation oncology. When I got to radiation oncology they told me that not only was I doing the "dry run" test of the equipment alignment, but we were doing the first treatment. So we are officially on our way!

So far I have not had any side effects from anything. The only effect I have felt so far is from the steroids they gave me before chemo. That will change, but I am feeling pretty pumped right now. I am just really glad things are started. It's like we finally sent the troops in and the war has started.

Finally, I am scheduled for treatment

It looks like the treatment is finally going to start on Wednesday next week (Jan 31). I am scheduled to go in for my first chemo treatment at 10 am. There are two different medicines they will be giving me: oxaliplatin and 5-FU. The oxaliplatin requires a 90 minute treatment at the cancer center once a week and the 5-FU is administered continuously through a portable pump. After next week, I am scheduled for the following treatments on Tuesdays.

The radiation simulation went well last week and I got my little tattoos. Jackie gives me a hard time because I can be a real prude and now I have 3 tattoos. The tattoos are just little dots that they use as reference points to align the radiation equipment. I don't know when the radiation treatments will start, but I am supposed to meet with the therapist next week to setup the schedule. Each treatment will take 15 minutes and I should be in and out in 45 minutes.

It looks like the treatments will be broken out nicely by month.

February: Chemo/Radiation
March: Rest
April: Surgery and recovery
May-August/October: Chemo

Acceptance

Looking back at the past 6 weeks, the most difficult time I have had so far with knowing I have cancer was the first couple of days after the original diagnosis. The colonoscopy happened on a Friday and I remember the following Sunday morning I was having trouble sleeping so I got up at like 5 AM and sat out on our back porch. I believe this is when I started to accept the situation I am in.

There was a certain comfort that came over me when I realized that my heart would be improved through this process. However, I think God also wanted me to realize that He was also working on other people's hearts, such as those in my family, as they are sharing this challenge. Since the time of my diagnosis the explosion of love from people around me has been incredible.

That morning I recall that the communion service at church hit me hard. It was a difficult process reconciling with God, but immediately after the service I felt better. Since then it has been much easier to have a positive attitude.

We have scheduled the simulation for the radiation treatment on Tuesday next week (the 23rd). After that it should take a week or so before we can actually start the treatment, although we may need to wait for a slot to open up with the radiation equipment.

Cancer Support Site

My cousin Lynn has done an amazing thing for me. She created a support site for me on Yahoo! Groups. Here is a link: http://groups.yahoo.com/group/AndyTofelCancerSupport

The amount of support we have received has been tremendous and Jackie and I are very grateful. Many people have expressed a desire to help out, but unfortunately there is not much to do right now. I think once we start with the treatment things will become more difficult. Thank you Lynn for setting this up!

I am a Cyborg

It has been a busy couple of days. On Tuesday we flew out to LA to see Dr. Beart at the USC cancer center. He is a highly regarded colorectal surgeon and we had an opportunity to ask him a bunch of questions. I am pretty set on using the surgeon I originally met with, but we felt it would be beneficial to get his input to make sure we are doing everything that we should be doing. After the meeting we had a lot of confidence in our current path and had some good feedback on our decision making process.

On Thursday we met with my oncologist at UMC. We talked through the whole treatment process and what I should expect as we go through it. During the 4-6 weeks of radiation treatment, I will be receiving a constant feed of chemotherapy (5FU) through a portable pump. The radiation treatment will be 5 days a week and the chemotherapy will essentially be 24x7. The next step to get the treatment plan in place is to get things started with the radiation oncologist. Unfortunately this is a complex process and it does not look like we are going to start the treatment for at least a couple of weeks. Looking back at when I first got diagnosed in the middle of December I had no clue that it would take a couple of months before I was actually going to start the treatment.

Today we had the port put in for chemotherapy. This was an out-patient surgery but they had to put me under in order to do it. I am very happy that we got through this step and it has improved my confidence that we will get through this whole process. I don't know why but of all of the things I hear that I am going to go through, the thought of sticking something into my chest was one of the most intimidating for me, so I am glad we are past it. The surgeon who is going to do the colon resection is the one who put the port in. We discussed some more details of the treatment plan going forward and I am very lucky to have him as my surgeon. He is very experienced and intelligent and I know he will be successful in the upcoming surgery.