One Year Survivor

It's been exactly one year since I received my cancer diagnosis. I remember that day in Oakwood hospital like it was yesterday. My prognosis at diagnosis was a 50% chance of survival at one year. The past year has certainly been a roller coaster both physically and emotionally. Although I've endured some very difficult cancer therapies, the joy experienced with Deb and the twins has far outweighed them.

God is our anchor and we fully accept His plan for us.

Nate

The Next Step

After weighing a number of clinical trial (i.e. experimental drugs) and radiation options, I elected to participate in a phase I trial for the drug Pazopanib (produced by the GlaxoSmithKline pharmaceutical company). This drug isn't brand new, as this trial opened in July of 2007. I am one of the last patients to enroll in this trial of approximately 40 people.

This drug is designed to stop the growth of blood vessels. Cancer cells require new blood vessels to supply the energy required to grow. The intention of this treatment is to prevent the tumors from growing by taking away their food supply. In addition, the blood vessels produced by cancer cells are much weaker than normal blood vessels and can break down. I primarily selected this treatment because all 8 melanoma patients enrolled in this study responded positively to Pazopanib. In addition the side effects are considered to be quite low. The trial lasts about 10 weeks, but if I get a positive response I can stay on the drug as long as I like.

I had my first treatment on Tuesday (12/2), which required a full day at Karmanos. Everything went well aside from having to spend 12 hours in a hospital bed. The oncologists are careful to monitor how patients respond to phase I drugs, which required repeated blood tests. It has been a few days since getting my first treatment and thus far I have not had any negative side effects.

Overall I feel like my condition is improving slightly. My cough has decreased significantly. However, I am still very fatigued and cannot spend more than a few minutes walking and/or standing at a time. I spend about 75% of the day in my comfortable chair.


Thanks for the continued prayer support. Please keep our family in your thoughts and prayers as the next couple of months will be pivotal in my battle with cancer.

BTW... It has been great to run into old friends from high school on facebook. Thanks for the words of encouragement and support.

Nate

Facing the Beast

I've had 6 CT scans over the past year to track the growth of my cancer. Although I've received the summary reports for each of these scans, none of my doctors had shown me the actual images from the CT scanner. When we met with the radiation oncologists from U of M Hospital they took us through the latest CT scan of my largest tumor in my liver. It was overwhelming to see how large this mass had become. The image below is a cross section of my torso at the stomach (I've labeled things to make it easier to orient the image).


The cancerous mass in my liver is not currently blocking any of the ducts of the liver that effect liver function, but the size of the tumor is putting pressure on other organs like my pancreas and stomach. Hopefully the next round of treatment will reduce the size of this mass.

Thank you so much for your continued encouragement, thoughts, and prayers.

Nate

Rough Last 2 Weeks

I caught some kind of upper respiratory infection a few weeks ago. Since then I have had a persistent cough that has culminated in severe back pain. I had to go back on medical leave and the past few days I have spent mostly in bed. I have medication that relieves the pain. Deb and my parents have been with me this week, helping me during the day.

We are not certain what path of treatment is next for me. I have a clinical trial consultation on Nov 3rd at Karmanos. We have also investigated targeted radiation therapy at U of M and will be meeting their doctors on Nov 4th.

Today is Halloween... Landon's costume is a Transformer (robots in disguise) while Morgan is dressing up as a ballerina.

Nate

Scan Results after Biotherapy Treatment

Deb and I had our follow up visit with Dr. Flaherty this morning to discuss the results of my MRI (brain) and CT (abdomen) scans. The good news is that there is no evidence of metastatic tumors in my brain.

Unfortunately we didn't get the positive news we had hoped from the CT scan. The tumor in my liver remains ~ 9cm in diameter, which is slightly smaller than a grapefruit. The official analysis of the scan states the liver tumor is larger than my last scan (July 11), but the reported measurements are nearly identical. I suppose it really doesn't matter if it is slightly larger or not, since I still have to deal with it regardless. The pre-existing tumor in my lung remained the same size as before ~ 3.5cm in diameter, which is slightly smaller than a ping pong ball. However, an additional tumor in my lung was detected in this scan, also measuring 3.5cm in diameter.

The bottom line is IL-2 biotherapy was ineffective in treating my Stage 4 Metastatic Melanoma. We are now going to look at my experimental drug options (known as Phase 1 trials). Deb and I will be meeting with doctors from Karmanos who specialize in selecting specific drugs for cancer patients who haven't responded to existing therapies. This meeting will be in the next 2 weeks and treatment will start soon after. If I decide not to enroll in a Phase 1 trial or if I have to wait for a trial to open, there are chemotherapy drugs that are available, but these would only be for slowing the progression of the cancer.

As you may imagine, Deb and I returned home with heavy hearts this afternoon. We had felt that my recent improvements in health would be reflective of my internal battle with cancer.

HOPE STILL REMAINS
- I have a very small risk of near-term organ failure
- I have a number of options in my next "at-bat" against cancer.

Please keep us in your prayers as we have difficult decisions to make in the next few weeks.

Nate

Pushing Scans and Results Back a Week

Ever since I returned home from my second stay in the hospital for IL-2 treatments Deb and I have had in our minds that my follow up scans were on Friday October 3rd. When I was getting all of my paperwork together on the evening of October 2nd, I noticed that my scans were actually scheduled for 7am that morning! Deb and I couldn't believe that we missed this. I guess we just got on with our life during this period of time and didn't think too much about these tests.

My MRI and CT scans have been re-scheduled to next week. We will be reviewing the results of the scans on October 14th with Dr. Flaherty. Basically everything has been moved back 1 week.

I am feeling the healthiest I have been since my diagnosis last December. Nearly all of the residual pain in my left lung has vanished. My strength and stamina grows every day. Last weekend our family spent time at a cottage on Lake Michigan. I bounced on a trampoline with the twins, took them on a kayak ride in the great lake, and we all climbed up / ran down a sand dune together. I thank God for giving me the strength to make such joyful memories.


Thanks to all for keeping us in your thoughts and prayers. Please pray specifically that the scan results will be unbelievably positive.

Nate

Update on Nate

I have been back at work for 3 weeks now. I have had a few days that I have worked a short afternoon, but I'm close to having enough energy to get me through the work week. My overall condition seems to be improving week by week, but I have struggled with aches and pains in my back. The back pain doesn't feel like the lung fluid I had previously.

Our weeks are still busy with BSF, small group, and band practice.

We are taking each day as it comes without taking any future ones for granted. We still have about 3 weeks before we find out the effects of the IL-2 treatment.

Back To Work

Nate is doing much better and is returning to work tomorrow! This is perfect timing since tomorrow is also the first day back to school for the kids and me. He is still feeling some fatigue but that's it. We have felt almost normal this past week and have enjoyed our time home with the kids.

Fatigue

Nate's been having a hard time with fatigue. He was hoping to return to work today but is going to have to put it off at least for another week. He goes to bed between 9-10 each night which is extremely early for him and wakes up between 4-6 a.m. He naps once or twice a day and spends all of his waking time on the couch taking it easy. His appetite is great and he is trying hard to put some of the weight back on that he lost during treatment. He has decided to abandon the vegan diet he was on during chemo in order to do this. He is also experiencing itchy rashes and a numbness in his upper left leg along with uncomfortable swelling in his liver area. It is uncertain if these are caused by the treatment.

I want to mention that in July we did find out that his liver tumor had nearly doubled in size in the six weeks post chemo. We also found out that his lung tumors had shrunk considerably and are now hardly detectable. More good news was that the cancer had not spread anywhere else.

His next scheduled appointment is Oct.7. IL-2 requires a long time to determine if it is having an effect. He was told to call and make an appointment if he had any concerns so I imagine we will do that if he does not improve this week. Please pray for him to have a great turnaround this week and to be energized and ready for work come Monday as this would really help raise his spirits.

A Slow Week of Recovery

It has been a week since I returned from the hospital. My recovery from the second week of IL-2 has been much slower than the first week. At the end of my first recovery week I had enough energy to play 18 holes of golf (riding in a cart). I am no where near to having the strength to do that now. I can do about 1 hour of light activity (i.e. cooking) before I run out of energy.

I am hoping that I can recover my energy by the end of the week so I can return to work. Meanwhile, I am spending lots of time on the couch watching the Olympics.

Better Than We Expected

Nate was awake all day yesterday and finally went up to bed around 9:30pm. He was able to sleep flat last night with only a small headache when he woke up at 4:30. This is amazing since last time he had to prop himself up almost to a sitting position because the pressure in his head was too much. His headache went away within half and hour and he was able to get another hour and a half of sleep! His nausea is completely gone and the swelling in his face, hand and feet is minimal. He thinks that maybe he had too much sugar (mainly from apple juice) during the first week of treatment which may have lead to the horrible migraines he suffered for the first few days following that week of doses. His main issues right now are fatigue and grogginess. This is definitely an answer to prayer.

Thank you for the e-mails and comments they mean a lot to us. Sometimes comments don't show up immediately because we have elected to approve them before they go online. Now that I can approve comments, I can get them up earlier.

On Friday while we were still at Karmanos we were pleasantly surprised to find that Brian (who Nate had met the first week of treatment) was our new neighbor. Since I couldn't eat in the room due to Nate's nausea, Brian and his wife Katie invited me to eat in their room. Our neighbor from home Caroline had dropped by Thursday night to have dinner with me. She had picked up Thai food from Eastern Market which was wonderful. I had so much left over that Brian, Katie and I were able to enjoy it for lunch -Thanks Caroline!. Katie and I went for a nice long walk outside in the evening which I hadn't done before because I didn't feel particularly safe by myself (Karmanos is downtown Detroit) and I didn't know the area. They showed me pictures of their recent honeymoon (camping in Hawaii) and we watched part of the Olympics opening ceremony. Some interesting things I found out about them is that Katie went to Hope college and is now a teacher. Brian is finishing up his teaching degree in History and Spanish. They like attending Mars Hill Church near Grand Rapids and were both camp counselors at Spring Hill Christian Camps. There is a link to Brian's blog on the right side of our main page.

Home Again

Nate had a rough night sleep but woke up feeling a little better. He actually watched some t.v. which he hadn't done in several days. At 11:30 we were able to leave Karmanos for home. Since Nate hadn't been on his feet much all week we thought it would be safer to take a wheel chair down to the car. We were so relieved to get home and after freshening up Nate ate a bowl of cereal-his first solid food since Monday. We are excited about the Olympics and look forward to watching it during the next couple weeks while he recovers. Morgan and Landon are still with my mom and Jim in Naperville, IL and will most likely come home later in the week.

6 Doses Complete/Week 2

Nate was given a dose at 3pm Thursday and another at 7am this morning. He had a very rough night sleeping and has decided that he doesn't want anymore. The doctor came in this morning and said that was fine. She said there has been no evidence that having more doses equals a better response. So this afternoon they will start taking him of some of the other drugs and we should be able to go home in the morning. He is very much looking forward to getting rid of the 15 lbs of water weight which is visible mostly in his face, hands and feet as well as getting over the nausea that he's had since monday.

4 Doses Complete/Week 2

Wednesday Nate was able to receive two doses of IL2. He had to skip the 3pm dose due to low blood pressure again. The drug is what lowers his blood pressure which has been mostly below 100/60 and going as low as 80/40. He was extremely lethargic all day with on and off nausea. This morning he was not given the 7am dose either and said he felt like garbage when he woke up. He hasn't eaten anything solid since lunch on Monday but the doctors say that is okay. He mainly drinks a combination of Propell and water. Hopefully he will be able to get 3 more doses by Friday night.

3 Doses Complete-Week 2

Yesterday Nate ended up having to skip the 3pm and 11pm doses due to low blood pressure and poor kidney function. He spent most of the day sleeping only waking for the nurses and visitors. This morning he was feeling better and was back in good enough shape for the 7am dose. Since he's been getting extreme nausea 4 hours after each dose his nausea medication was changed from right before a dose to two hours after. This seemed to work well yesterday so he's glad about that. We are hoping that he can get 4 more doses by Friday night so that would be a good thing to pray for since as of now he's only had 3 doses in three days. The last time he had 6 by Wednesday morning.
Last night we had six men from our church stop by to pray with us. It was wonderful to have them so thank you to those who were here. Nate said he felt like a blanket of peace had covered him during that time.

Beginning Week 2

Monday morning we headed downtown for the second week of doses. When we went to check in at 8a.m. there was some mistake because Nate was not in the schedule, we were told to sit down until things were figured out. We waited two hours before they gave us the papers we needed for Nate to go get a pic line put in. Turns out they didn't know we were coming either so they had to add us on. The lady said it would be about a half hour to which Nate and I laughed because we knew it would be much longer. We went and grabbed lunch at Subway then waited three hours before they took him in. By the time we arrived in our room on the 5th floor it was 2:30.

Nate was started on his first dose around 4p.m. and began to feel the side effects early. He had chills and nausea a few hours later so he requested demerol and fell asleep. He skipped his 11p.m. dose so he could sleep through the night which he will most likely do every night. Dr. Flaherty said he was expecting Nate to get about 7 doses this time around since the side effects tend to be much worse during week 2. Nate slept through the night and felt much better in the morning. He started his 2nd dose at 7:45.

By Wednesday last week Nate was feeling much better and was able to resume normal activities. We hope he can bounce back just as quickly next week but have been warned that it could take longer. The kids were scheduled to go with my mom to Grand Rapids to visit with my brother John, his wife Sally, and their three kids until mid week. There was a camping trip that my dad's side of my family takes each year at Gun lake. We were of course not planning on going but with Nate feeling fine we decided last minute that I would take the kids over to the campground Saturday evening, spend the night in our tent and then leave them with John and Sally on Sunday. We had so much fun camping I am very glad I was able to do that with them and to visit with my extended family.
While I was gone Nate was feeling well enough to go golfing with our friend Mike. He ended up getting a 90 on 18 holes which he said was his best ever. After golfing they went out for dinner and watched a movie!

Side effects wearing off

I woke up a couple times Monday night with a throbbing head, but each time it went away after a few minutes of getting up. I currently have an overall groggy feeling; I feel sluggish in both mind and body. At the current rate of improvement I think I'll start at the same baseline for week 2 of IL-2. One of the common side effects of this treatment is itching and rashes; I am not excluded from this. The nature of the rashes confuse me as they show up at random times in random places. I think my body still hasn't stabilized to what has been done to it. At this point the rashes are mostly a nuisance.

Morgan and Landon are nearly four now and Deb has been thinking awhile about getting them proper twin beds for their rooms, versus the convertible crib / day beds they are in now. I, of course, never think about these things, but then again most men don't. Since we both have a lot of free time (Deb is on summer break), we felt that this was a project we could tackle this week. Deb felt that a lot of the furniture could come from IKEA, so we loaded up the family in the SUV.

The twins romped around in the play area for an hour while Deb and I put together our item list. IKEA is one of those stores where you are a lot better off looking through their catalog before shopping, otherwise there is a sensory overload from all of the very inexpensive stuff (hmm... where could I put this cool $6 magnetic knife holder). Fortunately we had a pretty solid plan going in, so we were able to get IN to the checkout line in about an hour. Fortunately we were there on a Tuesday afternoon (which anyone who has shopped there on the weekend will understand). IKEA has appeal to both women and men for a couple reasons. Women like to visualize how different items in the store will enhance their home. Men like to solve the problem of getting all the boxes of stuff into (or onto) the car in a single trip. Tip for the women out there: let the man solve this problem on his own and thank him for it (even if it isn't in the most efficient manner), since success can partial offset the pain experienced in the wallet just minutes previous.

Later this evening Chuck and Missy will be visiting us from NC. In the meantime we have beds (and a dresser) from IKEA to assemble!

Free at Last

I had another difficult night, waking twice from intense migraine headaches. After settling myself and having Deb give me a gentle back rub, the throbbing in my head seemed to subside. I enjoyed a nice breakfast on our patio with Deb, as the weather was just about perfect. It may have just been a bowl of cereal but it felt like a bit of heaven to me.

By lunch time I was quite tired but fortunately none of the pain had returned. I hesitantly tried laying down on the couch and was relieved to find that there was no increase in head pain. I took a one hour nap while Deb sorted through some of our compiled mail from last week. The kids are returning home today with my parents, who will spend part of the evening with us. We'll share stories about the twins riding their new bikes and cheer on the Red Sox against the Angels on espnHD.

Thanks to everyone for their thoughts and prayers for my recovery from IL2 week 1. I really felt like Christ was right there at my side helping me through the headaches this morning. There is still a long road ahead for me on this treatment, but I feel to have turned onto a pleasant side street this morning.

BTW... Deb turns 30 today, so please give her a call or send her a note with birthday wishes.

Nate

Headaches...

Over the past 24 hours Nate has had severe headaches. When he lies down it gets worse so he spent most of the night propped up against the couch. Pain medication gave him a few hours of reprieve in the morning and in the evening but the pain never fully went away. He has also started itching mostly on his back and legs which makes it hard to sleep. He is feeling better otherwise and has been able to resume a normal diet. He did a little research online this afternoon and it turns out the water pill he is taking to get rid of the 10-15lbs of water weight he gained during the week is the probable cause of the headaches. Thankfully Monday morning will be the final water pill.

Good To Be Home

Yesterday afternoon Nate's temperature went up to 101.2 so the 3:00p.m. dose was skipped. This was more than fine with Nate since he had planned to ask to skip it anyway. He was given antibiotics and the fever went away by evening. He was also given some Demerol for the chills he felt coming on and that knocked him out for almost 4 hours. When our nurse woke him up at 5p.m. Nate was so convinced he had slept through the night that it took us a while to prove him otherwise. We had a good laugh about it after.

It was decided that Nate would not get the 11p.m. dose because of his worsening side effects. He had a restless night and I woke up at 4:30 a.m. to the sound of him watching t.v. He felt better in the morning and walked 10 laps around the floor. While walking he met and walked with another patient named Brian who is 23 and has had two remissions from brain cancer and is now having to go through treatments a third time. He was just married 12 weeks ago and lives in Grand Rapids. Please keep him in your prayers as well.

We were discharged at 1:00p.m. and it took me 5 loads to get all of the stuff we had accumulated throughout the week to our car in the parking garage. The gentleman working security stopped me after a while and gave me some free valet passes for our next stay.

It feels so good to be home! Nate is feeling tired and has on/off headaches but is in much better shape than yesterday. He is eating a little and drinking a lot. He is currently watching the Red Sox play the Yankees, which is a perfect distraction for him. He has seven prescriptions that he has to take during the next week. These will help him feel better and prepare him for Aug. 4th when he goes back for another week of doses. The kids are scheduled to return home from Nate's parents house sometime Sunday or possibly Monday.

10 doses complete - Week 1

The last day and a half have been much harder. Nate has extreme nausea 4 hours after each dose. He opted to skip the last two 11pm doses in order to have a better night sleep. Last night he didn't sleep well at all even with the skipped dose. Dr. Flaherty came in this morning and said that what he is going through is normal and that his vitals and blood work are all good. He said the last possible dose would be tonight at 11pm. Tomorrow would be for his recovery to return home in the afternoon. The good news is that Nate should bounce back quickly once off treatment.

Nate's mom brought the kids down from Port Huron for a visit around noon. Unfortunately Nate was at his worst and was only able to say Hi and I love you and just a few other things. The kids were wonderful and seemed to understand what was going on. We told them that Daddy was getting medicine that made him feel yucky and sleepy.

Yesterday we had two visitors; Caroline who is our neighbor and is recently in remission from ovarian cancer, and Josh who is a friend from church.

8 doses complete - Week 1

On Tuesday morning we had our first visitor, Felicity. She is a friend who actually works as a Doctor at Karmanos. It's amazing how much having someone visit lifts our spirits. Nate felt well enough in the afternoon to walk 5 laps around the floor and eat a light lunch and dinner. Karen and Carol, from my small group through Genesis, stopped by to visit. They brought us an additional blanket and pillow along with a Panera veggie sandwich that Nate and I shared. Nate started feeling the chills around 7pm and was given a dose of Demerol. We were told it would make him sleepy but would stop the chills immediately. They were right because he fell asleep for three hours waking briefly around 10pm and then slept through the night.

At 7am on Wednesday he was feeling nausea and was given some meds made him fall asleep for a few more hours. Nate's dad came at 11am to visit while I went to a professional development class for school in the afternoon. In my absence Nate walked one lap but spent most the time sleeping. In the evening we had four visitors- Mike, Eric, Donnell, and Tom who brought us some snacks from Trader Joe's along with a sub for Nate. We have found that we really enjoy the visits as they help to break up the day and energize Nate. After everyone left Nate began to feel nausea again so it was decided that he could skip his 11pm dose. Dr. Flaherty said that it hasn't proved more effective to get all of the doses so to skip a few is fine. Nate slept fairly well through the night and received his 8th dose in the morning. He was able to take a shower and do a little email and reading of the paper but only for a short time. At 11 a.m. he surprised me by getting up and walking two laps around the floor. He just needed to get up and stretch his legs.

If all goes as planned we will be headed back home Saturday afternoon for a week of recovery. Then on Monday Aug. 4 its back to Karmanos for a second week of treatments. Then its back home for another week or so of recovery and that will end round 1 of biotherapy. He will have 4-6 weeks before they will do a CT scan to check whether the IL2 is working.

The kids are staying the week up at Nate's parents (Gramodder and Papi as they call them) in Port Huron. For the second week they will be at our house and my mom will come in from Chicago to watch them. Thank you to those who have sent cards, emails, comments, and especially prayers. They mean so much to us.

Starting Biotherapy

Hi everyone, this is Deb. I will be helping update the blog while Nate is receiving treatment over the next few weeks. We checked into Karmanos yesterday so Nate could start receiving High Dose IL2. I found a great online video that gives every detail as to what that is however it is 27 min long so I'll also give you the basics.

High dose Interluken-2 (IL2)
This is a biological therapy not chemotherapy. Biological therapy treatments use your immune system to fight cancer while chemotherapy attacks the cancer cells directly.
Nate has to be in the hospital to receive the treatment because he receives a dose over a fifteen minute period every eight hours through an IV. 7a.m.-3p.m.-11p.m. is his schedule. Also he has to be very closely monitored for side effects which are numerous. He is weighed every morning because the drug almost shuts down his kidneys and he retains water. He could gain up to 4 lbs a day! They say he will lose it all within a couple of days of getting home by taking water pills. He has his vitals taken every two hours which makes for long nights. His blood is also drawn and checked daily. Most common side effects are general flu like symptoms, fatigue, restlessness, flushing and possibly itchy skin, diarrhea, swollen arms and legs, light sensitivity, chills/shakes, and loss of appetite. We were told most patients will get 8-12 doses with the max being 15. Doses are skipped if side effects are too severe.

We checked into Karmanos yesterday afternoon and Nate received his first IL-2 dose at 3p.m. He did great! We were told that most people get really bad chills and shakes soon after the first dose but Nate never got them. He started to feel aches all over a couple hours later along with some restlessness around 10p.m. but was able sleep most of the night. Dr. Flarhety came in at 8 this morning and was impressed as to how well Nate was handling the doses. The only concern was his blood pressure has been low so they will keep a close eye on that. Nate even felt well enough to eat a small breakfast. So far he has had 3 doses and is (as our nurse says) making this look easy.

We have been impressed with Karmanos so far. We were lucky enough to get a private room which is very large and has a nice feel to it. The nurses are wonderful especially Tania who was the first to sit down and go over everything with us. The floor is set up like a rectangle. The are often times patients lapping the halls during their stay (16 laps = 1 mile). We are in room 5219.

Deb

Father's Day

Dad, Mom, and my siblings joined us in Dearborn to celebrate Father's Day.

 

Disney - Part 1

 

 

 

 

Disney - Part 2

 

 

 

 

Slot Car Racing

I have made a number of new friends since being diagnosed with cancer. Bob N. (a colleague at Ford) invited me to BSF (Bible Study Fellowship) in the spring. In addition to enjoying the study of scripture I also met a number a really cool guys. Jimmy is one such guy. He has an amazing gift of creating crafts with his hands. Over a number of years Jimmy has built a realistic model scale slot car track in his basement that rivals the best in the world. He invented a way to race 2 slot cars separately on the same track. He has detailed his work on the following website AC2Car

Jimmy was kind enough to invite a number of dads (and moms) plus their kids for a lapping session. Bob and I served as corner workers as the kids gleefully spun their cars out on the tighter corners. Midway through the evening, Landon had mastered shouting CAR DOWN as soon as his car left the slot. Morgan tried her hand at racing but preferred to cheer on from the sidelines.

 

 

Thanks Jimmy for inviting us to such a fun event.

Changing the Treatment Plan

Five weeks have passed since my 6th chemo treatment and my white blood cells have not recovered to a sufficient level. In addition, the cumulative effect of chemo infusions over these past five months has caused major digestive system discomfort. Although the most recent set of CT scans show that the tumors in my lung and liver remain stable, Dr. Flaherty feels that we are plateauing on the benefits of chemo for my cancer treatment. I agree that it doesn't make a whole lot of sense to subject me to the "barbaric" side effects of chemo if the drugs are not shrinking my tumors.

Fortunately there are a number of other treatment options available for Stage IV melanoma. For the next round I will be getting a biotherapy treatment called High Dose Interleukin-2 (IL-2). Treatments such as these involve injecting drugs into the body that stimulate the immune system. Essentially my body will perceive it's under attack from a massive infection and increase the immune response. The hope is that the additional white blood cells produced by the immune system will find melanoma cells and destroy them. Side effects resemble those that normally accompany a severe case of the flu. Currently IL-2 is only utilized for melanoma and kidney cancer.

I will get a reprieve from any form of treatment until 21-July to allow my body to recover from the six cycles of chemo. Deb and I will dovetail in a couple of fun vacations in the meantime, a trip to Disney World and a family reunion (my side) on Cape Cod.

Thanks to everyone for keeping us in your prayers. Our God is a mercifully and loving God.

Keeping the Beat

Our band, Inline5, hosted a performance for friends and family, playing new songs along with old favorites. We are a group of Ford research engineers that aren't afraid to embarrass ourselves in public. I've been playing the drums with the band since the fall of 2006.

 

L to R. Eric (electric), Tom (acoustic), Nate (drums), Donnell (horn), Hugh (bass)

A little band history (and banter) courteous of Jeff, our unpaid band manager.

Dateline September 2005, June 2006, July 2007, and May 2008
VH1's "Behind the Music"
Inline-5: Initial Assembly, Real World Test, the Inevitable Rebuild, Losing a Cylinder, Jumping on the Ethanol Bandwagon, and once again Hittin' on All Cylinders

Initial Assembly
It all began when 3 working engineers decided doing the math just wasn't going to buy them the fame they so desired. In late 1999, Tom Megli, Jeff McGee, and Eric Curtis decided their musical talents and charismatic personalities were going to waste behind a computer. They formed an unusual three piece band that made do with two lead guitars and drums. Donnell Washington joined the band in early 2002 adding a horn section and widening their musical horizons. Finding a band name still proved elusive, in the course of a single show, they were known as, Tom Megli and the Megalomaniacs, Donnell Washington and the Debonair Dudes, Jeff McGee and the Artists Formerly Known as Engineers, and Eric Curtis and the Loose Nukes. They realized they needed one more element to bring the band together, a thickening agent so to speak. Eric (Gold Shoes) Curtis, "We realized a bass player could bring the band together by supporting Jeff's drum beat. After a failed audition with a neophyte 20-something bass player in 2002, we decided a grizzled veteran of the music scene was the way to go. We were very pleased to find someone as grizzled as Hugh Fader. His experience, skills and ability to get the band to gel were the final ingredients to our success."

Real World Test
Thus, with the late addition of bass player Hugh (Corn Starch) Fader, the band finally hit paydirt and Inline-5 was born. I-5 played to packed shows in local bars. They continued to increase their playlist and range. New fans wondered about the origin on the name; was it the North-South Interstate in California, a band wide vegetable smuggling incident at an international airport or related to a lost "art" photo featuring band "members" available via the internet? Perhaps an allusion to the five men standing on stage, or as engineers - a reference to a type of 5 cylinder piston engine? Apparently, they have decided to stay mum and let their fans choose which story to believe. It was all fun and games as the number of gigs and their fame increased.

But success and stardom would eventually take their toll…

Donnell (Sensei) Washington, "Even the local touring became work, the demands on us were becoming more and more extreme." The wear and tear of several shows a year would prove too much for one of the band. Newly added bass player, Hugh Fader, succumbed to what some described as "exhaustion" or "strep throat" forcing the cancellation of a sold out show in the Fashion Capital (of denim overalls) Milan . Rumors circulated of a visit to a rehabilitation facility and tabloid photos of a disheveled Fader only served to whet the public's appetite for another rocker living the life of excess. Manager Jeff (Where's my money?) Koncsol, "Hugh was just tired and needed to visit Royal Oak Gardens to get away from the responsibilities and duties that are part of the rock star/engineer life style. I mean it was so bad, he couldn't even count to ten with the help of his fingers anymore."

Meanwhile, the rest of the band considered replacements. The 'Big Man' Will Boddie, while available after losing his VP job with the Company, proved to be the least animated bass player the remainder of I-5 had ever seen. Lead guitarist Tom (Megli-oh) Megli, "Bass players aren't expected to move or anything, but we had to poke the 'Big Man' a couple times just to assure he was still alive. He just didn't have the Fader charm, and after several other auditions, we realized no one did!" Luckily, Fader's stay in Royal Oak Gardens proved to be just what he needed.

The Rebuild
Oct 2005 --- Thus, the stage is set for a triumphant reunion concert by I-5 with the return of a healthy, energized Hugh Fader laying down the bass line. Drummer Jeff (Dangerous Fibber) McGee, "I know I'm glad to have Hugh back, with out his help laying down the beat I was punching holes in my skins trying to keep everyone 'N Sync. (A nice reference to McGee's first "Boy Band" experience)" The rest of the band is happy to have Hugh back, too. The gentlemen of Inline-5 (Tom, Eric, Donnell, Jeff and Hugh) plan their comeback show in Milan, October 22nd, 2005. Be there to see history made, one cover at a time!!!

Losing a Cylinder
June 2006 --- Drummer Jeff McGee after half a career as a rock star/engineer found his creativity was being stifled by the dyno cell by day, band by night experience. As such, he decided to break away from I-5 to pursue a full time band gig. He soon found that playing drums full time in a Village People tribute band was even more difficult. "The hat I could deal with, but I really couldn't hit the skins properly with those plastic six-shooters, so I had to find another outlet for my creativity" said McGee. Although he plans to continue to pursue music part time, McGee found a pleasing complexity and sophistication (the two things lacking in his dyno cell and band experiences) in the world of computers. Proving that he did actually love the hat, McGee has chosen to pursue an advanced degree at a college in Texas. The remainder of I-5 not only wish him well but have left the door open to a possible future return, although all band members have universally concluded that it will have to be, "Without the hat!!!".

Jumping on the Ethanol Bandwagon…
Feb 2007 --- The very day I-5 become a four piece, the planning to update their image began. Guitarist Tom Megli, "We knew we couldn't just be a party band anymore. We had to find a way to make a statement." Following the growing corporate trend of "greening" the company image, I-5 decided to make a green (or perhaps, yellow and green) statement with the addition of corn (some of us call it maize) fed and educated (in Nebraska until college) drummer, Nate Trask. His imposing build is offset by an easy demeanor and willingness to play the "oldies" to satisfy the band while introducing them to the music of current stars like Snow Patrol. Trask says, "I thought keeping up with these grizzled old rock and roll engineering veterans would be effortless for a kid like me, but keeping up with four guys who smell like sweat and diesel isn't easy." Perhaps it won't be easy for Trask, but it will, as always, be interesting for their fans. So come out and see the premier performance of the band that smells like sweat, diesel and corn, I-5!!!

Hittin' on All Cylinders
May 2008 --- "The band continued it's hardworking ways and has even threatened to start paying me, although I'm not really sure that "You'll get what you deserve" holds the promise of any great fortune!" said Koncsol. Although they still may not be ready to pay for any outside services, the dedicated practice sessions and the addition of several new songs, plus the outside duo efforts of V-Twin; the Megli-Fader project which occasionally delivers the evenings entertainment at Birmingham Acres (Fader has decided to move more upscale in his "spa" facility), have put new energy into the old legs of the men of I-5. They've cleaned up their look, sold off the diesel and ethanol for record profits, tightened up their sound, and they will bring you a new show as soon as the playoff season ends. Be there!

Memorial Day Weekend

Deb and I took the kids with us to Deb's annual family reunion in the Grand Rapids area. We also spent a day at her uncle Phil's cottage.

 

 

 

Chemo #6

Today was my 6th chemo treatment at Karmanos. My brother Steve was kind enough to join me for the day, as Deb had to be careful with the remaining sick days in her school year. These treatments are progressively more difficult for me both physically and mentally. Even though I realize that the most difficult period will only last for about 5 days, the mere thought of those days is dreadful. It is probably very similar to the feeling young children have before going to get an immunization shot from the doctor or visiting a dentist. The anticipation is nearly as bad as the pain/discomfort itself.

Having Steve there with me for the infusion was good, since he could understand my treatment better than I could ever explain it to him, he could monitor me when the nurses were not there (I sleep for about 50% of the infusion), and most importantly he is great company. Similar to the 5th treatment, I received 25% less chemo than my initial infusions. The body can only take so much of these drugs before certain functions, like digestion, become compromised. I will get another CT scan before the next treatment, to see if chemo remains the best option for me.

Race Day

One of my favorite hobbies over the last 4 years has been autocrossing my 1994 Mazda Miata in the Detroit region. Autocrossing is an amateur form of car racing that normally takes place in a confined parking lot. A race course is defined using cones and competitors have 4 to 5 runs to achieve their fastest time through the course without knocking over any of the cones. Cars race through the course one at a time, so there is very little risk of injury to competitors or damage to the vehicles.

Every season my car club holds an autocross school so we can dust off our cars and sharpen our driving skills. Landon and Morgan have been too small up till now to ride in the car with me, but this year I thought it would be fun to bring them along. Safety is the highest priority in well-managed autocross events. Helmets are required for all drivers and passengers on the course. Fortunately one of the members of our club had a helmet that fit the twins (thanks again Ines).

 

 

I went over basics like air pressure and suspension settings with Landon. Here Landon is suggesting that I set the rear tire pressure even higher ;).

 

Someday I hope to teach Landon and Morgan how to drive a car like mine at the limit, but for now riding along will have to do. I started off at about 70% with Landon, but the first thing he said after the initial run was "Go Faster Daddy!." By the time we finished I was driving as fast as I could and the kids just loved it.

 

 

 

We all had a great time. Thanks to the club for organizing the event.

 

Bowling to Fight Cancer

Deb has been raising money for the Relay For Life campaign. One of the fund raising activities that her school has put together is a bowl-athon. Fortunately I had enough energy to roll a frame with the kids.

 

No ifs, ands, or ...

 

Landon has mad ninja skills...

 

More Positive News

I had my second follow-up CT scan on 10-Apr, which followed my 4th chemo infusion by 2 weeks. The CT scans are the primary method of determining how effective the treatments are against the cancer. The interval of the CT scans is 6 weeks, which seems like a long time (even if you aren't the cancer patient). Deb and I also had to wait out another week before we met with my oncologist again. As you can imagine, anxiety sets in as you wait, because you don't know what to expect. I kept running the various scenarios through my head...

1) Will the chemo be effective and I continue on the same treatment path? OR
2) Will a complete miracle occur and there be No Evidence of Disease (NED is what cancer patients long to hear from their oncologist)? OR
3) Will my cancer continue to grow and take us back to square one?

Morgan and Landon had a great idea for us to take our minds off of such things. Let's go fly our kites in the park!



Our kids have wisdom way beyond their years.

We met with my oncologist this morning after my blood was analyzed by the lab. I have been fortunate to have a very large vein in my arm stay intact during my chemo treatments. The lovely nurses who draw blood from me every week grin ear to ear at the thought of how easy the blood draw will be, like driving on the interstate with 4 lanes open all to yourself.

I told my oncologist that I felt like I was improving physically (excluding the 5 days of side-effects after chemo treatments). Wonderfully, he shared that the CT scans seem to agree with my overall feeling of health. The mass in my left lung has decreased significantly again to the point were it is somewhat difficult to see on the CT images. The tumors in my liver have stabilized since my last CT scan.

My doctor noted that he has seen cases in the past for non-active tumors remaining on CT scans for up to 1 year, since it can take the body that long to reject the dead cells. To get a better idea of the level of tumor activity, he recommended getting a PET scan, which is non-invasive test that can detect the level of cancer cell activity. If the CT scan will tell you size of a light bulb, the PET scan will also tell you whether or not it is burned out. My PET scan is scheduled for next week (24-Apr).

I was supposed to have a chemo treatment today (#5), but since my platelets were low I rescheduled for next Friday (25-Apr). Hopefully the results of the PET scan will be available to review with my oncologist next week and we can get a better sense of what the CT results mean. If the tumor appears to be dead, I might get a reprieve from the chemo treatments for a while.

We appreciate all of the prayer support we have been getting from family and friends alike. We are praying bold prayers like many of you and God has answered those prayers today. Praise GOD! Please continue to keep us in your prayers, for encouraging results from the PET scan, minimized side-effects of the chemo treatments, reducing anxiety for both myself and Deb, and protection for our entire family from getting sick.

Relay For Life

Dear Family and Friends,

I've decided to take action against cancer by participating in our local American Cancer Society Relay For Life event on May 17-18, 2008 from 10:00 a.m. - 10:00 a.m. Relay For Life is about celebration, remembrance, and hope. By participating, I am honoring cancer survivors, paying tribute to the lives we've lost to the disease, and raising money to help fight it. Many people have asked what they can do for our family during this time and there just isn't much besides prayer that can be done. This is something we can all do together.

Please help support me in this important cause by making a donation. It is faster and easier than ever to support me by making a secure, tax-deductible donation online using the link below. If you would prefer, you can send your contribution to the mailing address listed below.

Whatever you can give will help - it all adds up! I greatly appreciate your support.

Sincerely,

Deb

To make a donation online, visit my personal page.

To print an offline donation form, click here.

If you choose to make an offline donation, please be sure to notify the Relay For Life participant that you are making a contribution on their behalf. Please make checks out the American Cancer Society and send the complete form with contribution to the local American Cancer Society office at:
American Cancer Society
20450 Civic Center Drive
Southfield, MI 48076

Easter Weekend

Chemo treatment #4 was scheduled to occur on 21-Mar (Good Friday) depending on the outcome of my blood work. My Neutrophil (specific type of white blood cell) count has to be at least 1.5 to administer a chemo infusion (based on the specific protocol of my treatment). My previous treatment, originally scheduled on 22-Feb, had to be delayed by a week since my Neutrophil count was 1.2. To be honest, I was hoping that my Neutrophil count would be under the 1.5 threshold since my family was gathering together for easter at my parents house in Port Huron. I was happy when informed that my Neutrolphil count was 1.4, delaying treatment until 28-Mar.

Deb, the twins, and I went up to Port Huron on Saturday morning. Meg, Em, and Steve also came up for the weekend. We had a relaxing time together as a family. Here we are after the Easter Sunday service.

Side effects are fairly mild by the time I reach 3 weeks from treatment. As you can see, my eyebrows are nearly gone now. Overall, this weekend was the best since I was diagnosed, in terms of energy and spirit. Treatment #4 looms around the corner...

Follow up CT scan

My experience during the second round of chemo treatment was similar to the first. The day of and after the treatment I felt fine, but the following 5 days were uncomfortable. During this time I get fatigued easily and experience general aches and pains. Thus far my appetite has been great, but this round of chemo was difficult on my digestive system. After some research, I found certain nutritional plans are much easier (and healthier) for the body to process.


I have adjusted my diet drastically before. Just after the twins were born I was my heaviest, 265lb on my 6'6" frame.


At that time I decided that I didn't want my kids to see me as an overweight father. I cut my caloric input by 1/2 and did weight training exercises 3 times a week. I lost 40lbs in about 6 months.

I have kept the weight off by eating less than I used to, but I haven't utilized the healthiest diet. I tend to eat lots of processed foods, red meats, and refined sugars. I switched to diet soda when I originally lost my weight which helped reduce my caloric intake, but it's certainly not the healthiest way to hydrate.

For the last 2 weeks, I have switched to a vegetable focussed nutrition plan that has a moderate amount of lean white meat (to get me the appropriate amount of protein). This nutrition plan provides loads of nutrients, vitamins, and enzymes that my body can process much more easily. I don't know if this diet will help my fight against cancer, but it certainly can't hurt eating a diet full of foods that are natural provided for us (Genesis 1:29). In addition, I drink about 100 oz of water a day.

Deb and I went to Karmanos yesterday for my 3rd scheduled chemo treatment. We first met with Dr. Flaherty to discuss the follow up CT scan taken the week before. The oncology field uses results from the CT scan in conjunction with other indicators such as blood work (each of the 100+ cancers is different, but for liver melanoma one blood indicator is LDH, an enzyme that can indicate liver disease). A normal LDH level is 250. At my first consult my LDH was 800. By my second treatment it had fallen to 300. On Friday the LDH was just under 200. We took this as encouraging news.

The CT scans were a mixed story. The mass in my left lung (not known if it is cancerous) has decreased in size by 60%. There is also no evidence of fluid in my lung. The liver CT scan was a different story. The new images looked significantly different than the previous ones. On the CT scan report, the tumor is larger than before, but Dr. Flaherty thinks that the official measurements don't tell the whole story. Since all of the indicators of my health (i.e. energy, pain, sleep, appetite, blood work) have been improving, he feels that changing my treatment now based only on the liver CT results would be a knee jerk reaction. I agreed with him and elected to proceed with 2 additional chemo treatments.

My white blood cell count came back slightly low for the chemo protocol, but it was still high enough to adequately fight infections. This means that I will have to wait a week before getting my 3rd chemo infusion. Every day I realize more that this is going to be a long road for me. In a world that expects fast and quantifiable results, cancer doesn't fit. Faith and patience will be what gets me to the end of this road, wherever it leads.

Please keep me in your prayers for the chemo drugs to be effective over the next two treatments, that I'll avoid infections during this difficult time of the year, and that I'll keep hope and strength through this process. In addition, please keep Deb, the twins, and the rest of my family in your prayers. Cancer can be just as difficult for those close to it.

Thanks to everyone for your comments on my blog, as you have been sources of inspiration, joy, kindness, and love. It is comforting to know there are lots of people pulling for me.

Cautious Optimism...

As I write this entry, I am getting my 2nd chemo treatment at Karmanos. Since some time has passed since my last entry, I won't get to the meaning of the entry title until the end...

After being on medical leave for almost 2 months, I returned to the office the previous Tuesday (22-Jan). I had been in contact with my boss and a number of colleagues during my time away from work, so it felt like much less than 2 months had passed since I last stepped into the building. My first day back went better than I expected, particularly since I didn't know how fatigued I would be over a full working day. Many of my colleagues were glad to see me back in the office, interested in knowing how I was doing, and offered words of encouragement for my "climb."

I had enough energy after my first day of work to practice with my band, Inline5. For those of you who have not seen us perform (i.e. most of you), we are 5 engineers in Ford Research that don't mind embarrassing ourselves in public (everyone has lead vocals on at least 1 song). All kidding aside, we have a lot of fun practicing weekly and performing a few times a year. I have been the drummer in the band for 18 months, on an instrument I hadn't played since the 9th grade. Fortunately drumming is like riding a bike; no matter how long you are away from it, you can pick it back up quickly.

I thank the Lord that my side effects from the treatment have been relatively minor. When I went back to work I had developed a rash on the back of both of my hands. At my Thursday doctor appointment we found that it MAY BE due to the clinical trial drug I am taking. One of the common side effects of the drug is dry and itching skin. My oncologist's assistant had seen similar looking rashes before. She recommended an appropriate moisturizing agent and the rash cleared up by the weekend. My blood work showed that the platelets (blot clotting component) were in the normal range but the white blood cell count was low and would have to come up before my next chemo treatment.

Every morning since my first chemo treatment I have looked at my pillow and tugged at my hair to see if it was falling out. On Wednesday (23-Jan), 12 days after my first treatment, I was able to pull strands out easily. In my case, my hair didn't just fall out at once, but by Friday my hair was thinning out rapidly. 10 minutes after returning home from work on Friday I put the clippers on the lowest setting and removed what was left of my hair. It is a little ironic that this hair(less)style was the one that Deb didn't want me to do (before I started treatments, of course). My mother, who tells it like it is, prefers the bald look.

Deb's mom came to visit over the weekend. On Saturday I woke up with some pain in my upper left back that felt like a muscle strain. Deep breathing was difficult since I had acute pain in my back. Fortunately it did not feel like there was fluid in my lung. Deb and her mom took the kids sledding in the morning and shopping in the afternoon. I took it easy on the couch.

On Sunday our pastor at Genesis preached on being under pressure (Acts 16:16-32). Paul and Silas were preaching in Philippi. A slave girl, who was a fortuneteller (and money maker for her owners), pestered Paul to the point where he commanded the evil spirit out of her. Her owners, upset since they no longer had their profitable business, roughed up Paul and Silas and riled up others against them in the market square. The judges took the side of the mob and ordered that Paul and Silas be stripped and severely lashed in public. After the beating they were put in a cell that was the most secure in the prison. Clearly Paul and Silas were under pressure, more pressure than most of us will ever face in our lifetime. Instead of groaning or complaining about their situation, Paul and Silas prayed and sang hymns, which shocked the other prisoners. An earthquake caused all of the cell doors to open, releasing all of the prisoners. The guard who was supposed to prevent Paul and Silas from escape feared what would happen to him and prepared to commit suicide. Paul stopped him and led him and his family to salvation. I understand that prayer and singing hymns won't necessarily save you from pressure in your life, but Paul and Silas didn't know that the doors would swing open either.

On Monday I was back at work for my second week, getting settled into my office, and making progress on assignments that had been on the backburner since I went into the hospital. My back pain had subsided by Thursday and my breathing returned to normal. I also resumed exercising this week, a brisk walk for 30 minutes each morning on the treadmill.

And that brings us to today and "cautious optimism"... Before I could get my second chemo infusion, my oncologist had to ensure that my blood work met the requirements of the protocol. My white cell count climbed back to normal over the past week. This means that my bone marrow is healthy, important for me fighting infection. In addition, the enzyme level associated with the activity of melanoma in my liver dropped when compared to my initial visit before starting treatment. These findings, in addition to how much better I have felt the last 2 weeks, are positive results. I'm not through the woods yet, closer to just entering the forest. We won't have another CT scan done until mid-February, but we were warned that the scans might not respond in the same manner as the blood work. It is a long road ahead, but I'm hoping days like this outnumber the alternative.

First Week of Treatment

Everyone has different reactions to chemotherapy treatment; this past week was my chance to gauge how my body would respond to the drugs. In many respects I want life to return to normal, so I knew that this week would be a benchmark for what I could expect over the next few months of treatments.

On Monday morning I felt very similar to the previous weekend, no fluid in the lungs and overall feeling good. However, by Monday evening I started to feel aches in my joints and muscles. It felt like a case of the flu, minus the nausea. On Tuesday the joint and muscle aches had become more painful and my feet felt like they had fallen asleep. By Tuesday evening I couldn't stand for more than a minute or two, so I spent most of the day on the couch.

Deb and I went through the literature from Karmanos and found that my aches were a fairly common side effect, which normally starts 3 to 4 days after each chemo treatment (the steroid infusion from treatment day wears off by this time). The aches and pains normally subside in 1-2 days. On Wednesday the aches in my joints were gone, but I still had the tingling feeling in my feet.

Thursday morning Deb and I went downtown to Karmanos for a 1 week check up on my blood pressure and blood work. All of the results came back normal for the chemo treatment protocol. My white blood cell count is high enough to fight infections, but I will have to be diligent in keeping my hands washed and minimizing my exposure to people who are ill.

From the standpoint of pain, most patients on the daily 2400mg of Ibuprofen I take (equivalent to 12 over-the-counter pills) is effective against the post-treatment aches and pains. My doctor prescribed a stronger pain reliever for the next chemo treatment. We also found out that the Taxol chemo drug has a drying agent in it that helped clear up the fluid in my lung.

After returning home from the appointment on Thursday afternoon I decided that I would return to work on Tuesday (Jan 22nd). This is something I have looked forward to since being released from the hospital, as it will put some normality back into my daily routine. It has been good for me to rest and recover at home, but I believe I am strong enough to return to the office.

On Saturday morning Deb came down with a 24 hour flu bug that hit her really hard. I had a moment of panic as the twins had their first dentist appointment at 8:50am and I'm not the most proficient at getting the kids ready to go. Somehow I got Morgan and Landon to their appointment on time. They couldn't have done any better at their first check-up. Morgan kept telling the hygienist that "we brush our teeth so they won't fall out" and Landon wanted to get really close to all of the dental tools. They really liked the close up pictures of their teeth displayed on the monitor.

My parents, Meg, Em, and Steve visited over the weekend, as this was the AFC Championship weekend. We all cheered the Patriots onto a 21-12 victory over the Chargers. We'll do it all over again in 2 weeks for Super Bowl XLII.

Thanks to everyone who has posted comments on the blog, I really enjoy reading them and it gives me feedback that a lot of people are thinking about and praying for us. A number of you mentioned that you enjoyed the pictures I included in the previous blog entry, so here are a couple more from a recent sledding outing.



Morgan forges up the hill while Landon prefers to ride.

A free ride back to the car.

I feel blessed that my side effects thus far have been minor and that I'll be able to return life closer to normal. Please continue to pray that I'll stay free of infection, that the chemo drugs will be effective at killing my cancer, and that my strength and endurance will continue to increase.

Starting My Climb Up the Mountain

They say that when dealing with cancer you'll go through peaks and valleys. This past week epitomized this experience.

Deb returned to work on Monday and the kids went back into daycare. Since they were off early in the morning (and I was still in bed), Morgan and Landon decided to come upstairs and give me a hug and kiss before they left. To my delight, they have made this part of every morning before leaving for school with Deb.

When I got up from bed on Monday, I felt an aching pain in my chest that was eerily similar to that before I was admitted to the hospital (although at a lower intensity and without the lower back pain). The last thing I wanted to have happen this week was to be re-admitted to the hospital to drain fluid from my chest, since this could impact my first chemo treatment scheduled for Friday.

When diagnosed with cancer, it is always in the back of your mind, but I have found that when I'm feeling well or when I have family/friends with me life is much more enjoyable. On Monday morning, I suddenly had neither of these positive influences. Then I noticed that I had a voicemail from my Dad that I missed from Sunday night, saying he wanted to come down and spend some time with me. It is amazing to me how the Lord recognizes and supplies our needs, before we even know we need them. Luke 1:49-50 (NIV)

49 for the Mighty One has done great things for me — holy is his name.
50 His mercy extends to those who fear him, from generation to generation.

Dad and I only spent about 3 hours together that afternoon, but in that short time we continued work in the kitchen (including the final fitments and hookups of the dishwasher) and had memorable conversations involving God, life, and family.

Late Monday afternoon, I had a follow up appointment with my pulmonary doctor. I had my early morning concerns about fluid build up in my left lung verified. Fortunately, the doctor didn't consider the amount of fluid necessary for immediate drainage, but he gave me the warning sign for when I should return to the hospital (shortness of breath at rest). At the time, his diagnostic tests showed my lungs at about 75% capacity of normal.

Sleep on Monday and Tuesday night was restless and alternating hot and cold sweats. My oncologist has said that this is a common occurrence with my form of cancer. On Wednesday, I experienced the chest pain again in the morning when getting out of bed, but I was feeling better once getting up and about.

I decided to install the last major piece of the kitchen remodel, the sink. Fortunately my friends and family had already assembled the plumbing, fixtures, and disposal, so all I needed to do was drop the sink into the square hole in the counter. After solving some minor fitting issues and putting down a bead of caulk, the sink was ready to go in. After all of the under-sink fasteners were secured, we finally had a functional kitchen. All that is left now is some minor trim work. Here are some pictures of the original to near finished project.

1950's original tile counter with painted cabinets

You can't find stuff like this anymore, unless you go to the Habitat Re-store in Detroit ;), where it is surely still sitting on a shelf.

Demo finished, beginning of prep (approximately 1 week before I went to the hospital)

The project near completion

My thanks goes out to all of you who helped us with this project (Derrick, Dan, Mike, John, Ben, Deb's Dad and Mom, Jim, Jorge, my Dad and Mom, Steve, Em, and anyone else I may have missed).

My Mom watched the kids Wednesday evening so Deb and I could meet with an estate planning lawyer. By the time we returned home, I was completely exhausted from the hour of driving and 2 hours of discussion. My temperature was running about 1 deg above normal. I had a difficult night, but for some reason I felt pretty good when I woke up.

Thursday was a milestone day for me. After 18 months with upper and lower braces, my dentist had them removed, giving me a mouth full of straight teeth. It was important to get this done before chemotherapy, fortunately the timing worked out perfectly. I'll be required to wear retainers most of the time the next 6 months as my teeth lock into their final position. It is funny to hear me talk with a lisp. In a few weeks I should be adjusted to the retainers in my mouth. On Thursday night Deb took the kids up to my parents for the weekend.

Friday was chemo day. We arrived at Karmanos around 7:30am, first stop being the lab for bloodwork. Unfortunately, there was a mix up with our paperwork and we waited 90 minutes before finding out that we had already missed our 8:40am appointment with Dr. Flaherty. Everything was eventually sorted out, but we were essentially running 1 hour behind schedule. My bloodwork came back OK for chemo treatment and we had a good discussion with Dr. Flaherty regarding the chemo and clinical trial drug treatment. My chemo drugs were Paclitaxel (often called Taxol) and Carboplatin (the nurses referred to it as Carbo). These chemo drugs are considered to be low on the toxicity scale, with side effects being relatively mild. The most common side effect of the clinical trial drug (BAY 43-9006) is dryness or a mild rash on the skin. Dr. Flaherty felt that the overall treatment would potentially reduce my lung fluid issue, as a very small tumor (smaller than can be detected on a CT scan) could be causing irritation resulting in fluid collection in my chest cavity.

We settled into our private chemo room at 12:30pm, and finally started the brigade of intravenous drugs at 1pm. The first 3 drugs (~60 minutes) were pre-chemo concoctions that included anti-nausea and steroid medications. Taxol was the first chemo treatment, which took 3.5 hours. Carbo was next, which took about 45 minutes. I didn't have any negative side effects to either of these drugs during the infusion. We finally exited Karmanos at 6:45pm, a long day but thankfully I was feeling well enough to drive us home.

Deb's mom arrived at our place late Friday night for a weekend visit. I slept well and felt just a slight amount of chest pain when getting up from bed (due to the fluid in the left lung). After taking my pill medications on Saturday morning, I felt like going out for breakfast. We stopped in at our local IHOP and found out that Doug Savant (one of the stars from Desperate Housewives and brother of the IHOP owner) would be at the restaurant from 1-4pm. Deb and her mom were quite excited and decided to return later to get a picture with Tom. I decided that I had enough of IHOP for one day ;).


On Sunday morning I got out of bed with no chest pain, which meant that most of the fluid in my chest was gone. My appetite has been great and I'm feeling energetic. I haven't experienced any of the negative side effects. I'm hoping that this will continue over the next few weeks as the drugs battle my cancer. Note that I'll probably lose what's left of my hair in the next 2 weeks ;).

Please continue to pray for my healing, specifically that I avoid infection due to my weakened immune system, that my lungs would stay clear of fluid, and that the chemo and clinical drugs would shrink my tumor.

Chemo Treatment Delayed...

I was scheduled to have my first chemotherapy treatment today, but I received information from Karmanos yesterday that my drugs for the clinical trial had not yet been delivered. Due to the holiday season, the drugs were delayed in getting here. I am now currently scheduled for my first chemo treatment on Friday, 11-Jan.

The clinical trial I am enrolled in is in phase 3. This clinical trial is a supplemental drug (taken daily) to the normal chemotherapy infusions every 21 days. Since this study (like all medical drug studies) is double blind, I will have a 50/50 chance of getting the clinical trial drug. The alternative is a placebo pill, which is an inactive look-alike. I won't know which pill I'm getting. My oncologist won't know which pill I'm getting.

My port has healed well over the last couple of days. We have all enjoyed being home as a family this week. Deb returns to teaching on Monday.

Merry Christmas and Happy New Year

The family went up to Port Huron on Christmas eve to spend time with my parents and siblings. When we left, we really didn't know how long we would spend there, as this was the first time I would be away from home since my diagnosis. Little things like how a bed feels different than a home can effect recovery.

Deb and I took the kids to the Christmas eve service at Grace Episcopal (where my dad is the priest). I grew up singing hymns in the church and have always found that I particularly enjoy those commonly used in the Christmas eve service. In the book "Tuesdays with Morrie" (author Mitch Albom), Morrie (who was homebound and dying from ALS) talked about how he appreciated things more in his condition. "I look out that window every day. I notice the change in the trees, how the wind is blowing. It's as if I can actually see time passing through the windowpane." (p.84) Although I wasn't in the same situation as Morrie, I identified with him. This was a Christmas eve service that I appreciated like none before.

Christmas day was wonderful, and as typical, relaxing with my family. We stretched our gift opening from mid-morning to early afternoon. Even the twins were patient as we opened our gifts, one person at a time. By the afternoon, Landon was content to spend the rest of the day playing with his Mack and McQueen Lego set, and Morgan hosted her own tea party.

We ended up staying with my parents until Friday evening, as being all together as a family aided my recovery every day. Taking deep breaths was becoming more comfortable and my stamina continued to increase. On Saturday, my parents, my brother Chuck and his wife Missy, and my brother Steve visited us at home. Being the Boston sports fans that were are, we watched the New England Patriots complete their perfect regular season in dramatic fashion. It seems so strange to be a Boston sports fan these days, as all of the failures and disappointments as recent as 10 years ago have been replaced by victory and championships. Boston teams that were once the lovable losers have now become despised.

Chuck and Missy set off for home (Charlotte) Sunday morning, while the rest of us attended the Sunday service at Genesis. A guest speaker, and former Genesis attender, spoke about God's Will for us, which I found particularly insightful. As you can imagine I have been frequently asking the Lord what His plan is for me.

Deb and I headed back to downtown Detroit on Monday. I was scheduled to have a port placement to facilitate the delivery of chemotherapy drugs. We arrived at Harper Hospital (connected to Karmanos) at 7:30am. After the usual blood samples and diagnostic tests, I was informed on the options for the port placement. I could either have the port placed on the inside of my arm next to the bicep or below my collarbone on my chest. I also had the option to either use local anesthetic or could be induced into sleep. I elected to have the port placed on my chest (right side), due to a slightly lower risk of blood clotting, and local anesthetic since I could walk out of the hospital after the procedure was complete (if induced into sleep, the hospital requires 2 hours of observation before discharge). The procedure lasted about 15 minutes, the only pain was from the administration of the local anesthetic, which felt like a needle being slowly plunged into your skin over about 30 seconds. After returning home, I spent most of the day resting on the couch. Needless to say, we didn't have an elaborate New Year's eve party at our place.

I was a bit sore when I woke up this morning, but as soon as I got up and around I felt much better. We had about 3 inches of snow fall over the evening. Our neighbor Ron kindly blew the snow off of our walk and driveway (thanks Ron). We also had a nice chat with his wife Carolyn, who is a cancer survivor. The snow, combined with the 32 deg F temperature, made for perfect snowman building conditions.