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.

We Have a Plan

I spent the week at home with my Mom, Dad, and sister Em alternating days. Every day I feel a little bit better. Deb was back at work every day except for Wednesday. On Wednesday I had my first consultation with my melanoma specialist, Dr. Flaherty at Karmanos.

Karmanos is located just north of downtown Detroit, next to Wayne State University. Deb, my Mom, and I went downtown together for the appointment. Our friend Felicity, who works at Karmanos, visited with us before we saw the doctor, which made the appointment feel more comfortable.

Dr. Flaherty clearly explained what I was up against and his recommended treatment plan. Since I am diagnosed with Stage IV melanoma (in the body, not the brain), surgery isn't a viable option. Dr. Flaherty explained why surgery wasn't utilized for my condition through the following metaphor. If you found a dandelion (i.e. cancer) in your front yard, you could use a shovel (or even a backhoe) to remove the dandelion, but in the future other dandelions would sprout in the yard. The primary problem isn't the dandelion, it's what's in the yard. Dr. Flaherty discussed the treatment options that attack the cancer that is in my body (not necessarily limited to my liver). Unfortunately, the state of the art in body imaging (CT scans) can only detect tumors greater than 1 cm in size (about 3/8 of an inch)

The 2 primary treatment options that Dr. Flaherty discussed were chemotherapy and biological therapy. Chemotherapy was selected at this time because bio-therapy can cause fluid to collect in the chest cavity. Since I already had been admitted to the hospital with excessive fluid in my lung, there is a risk (at this time at least) that biological therapy would not be fully effective, as I would have to stop the treatment if I was re-admitted to the hospital.

I had another CT scan early Friday morning at Detroit Receiving Hospital (for which I drove myself downtown). In a small world moment, I chatted with a very friendly woman (also in for a CT scan) who happened to have Dr. Flaherty previously for melanoma and breast cancer (on separate occasions). She expressed a very positive experience with Dr. Flaherty.

On Saturday and Sunday, Deb's family arrived from Chicago and Grand Rapids for an early Christmas celebration. We fit 8 adults and 9 children (all under age 7) into our little bungalow. At times it was hectic, but we had great fun spending time together.

1st week back home

Every day I am recovering more of my strength and stamina. I have my share of aches and pains, mainly due to being inactive for such a long period of time. I take these pains in stride; sometimes it is hard not to think that these are somehow related to my cancer.

The official diagnosis of my condition, for which I was admitted to the hospital, is pleural effusion due to pneumonia. The type of pneumonia was not determined (i.e. bacterial, viral, fungal, etc.). The fluid extracted from my chest tested negative for cancerous cells.

If this is truly the case, then I firmly believe that the pneumonia is a blessing, as who knows when/if the melanoma in my liver would have been discovered. I thank the Lord for having the shadow on my liver show up on the original CT scan when I was admitted to the hospital.

I will be meeting with the melanoma expert at Karmanos next week, which hopefully will help us lay out what to expect for my treatment.

Deb's mom returned home on Friday after spending a week with us taking the kids to a from daycare and running countless errands to keep our house in order. We thank you so much for all the time you have given us.

Mom and Steve arrived on Friday evening. Dad arrived on Saturday, together we spent a few hours working on the kitchen. Derrick and Mike installed the base cabinets on Tuesday, John put in a new sink on Wednesday, and our floor was installed by contractors on Friday.

Returning Home

The chest x-ray was finished early morning and the pulmonary doctor informed us that there was no indication that fluid had returned to my left lung, so I would be cleared to go home if everything came back fine on my bone scan.

My oncology doctor's assistant noted there was some "irregular activity" in my 7th and 8th ribs on my left side (location of my back pain when I was admitted to Oakwood). There weren't any specific conclusions that could be drawn, as the "irregular activity" could be due to a strained muscle. A set of rib x-rays were ordered (which turn out to be different than a chest x-ray for my lungs). Since I already had approximately 6 x-rays over the duration of my stay at Oakwood, the hospital tried to get the necessary rib images from previous shots. By 3 pm, it was finally decided to send me downstairs to get the set of x-ray images of my ribs.

At 4 pm, we were transferred to a different floor of the hospital, as the 10th floor was being cleared for renovations over the holiday. At 5 pm my primary doctor informed me that the rib x-rays showed no abnormalities in my ribs, so I was free to go home. By 6 pm I had my discharge papers, so after 195 hours in Oakwood hospital I walked out of the building with Deb.

Everyone was relieved that I was home (myself included). Although the hospital has all of the needed care available on-site, there is nothing like the comfort of home.

First Positive News

Early morning, our Oncologist let us know that the MRI scan of my brain was clean. This really felt like a turning point, as this was the first positive news we had received regarding my cancer.

I had the bone scan done in the afternoon, with results anticipated tomorrow. An x-ray of my chest was scheduled for first thing in the morning to verify that my left lung was still clear of fluid. If the x-ray came back clear, I was told that there was a good chance for me to return home tomorrow.

Ben and I played chess in the evening while Deb and her Mom spent some time at home with the kids. Ben returned home in front of the oncoming storm.

Visitors:
Ben, Deb's mom

Finally, Some Mobility

This was the first day where I felt more comfortable out of bed than in it. I spent a large chunk of the day down in the visitor's waiting room with family and friends. We passed the time playing card games and discussing everything we knew up to this point.

In the late afternoon, I went downstairs for the MRI of my brain. The procedure lasted about 1/2 hour and required me to stay absolutely still. We expect to hear results from the scan tomorrow.

We know that there are a lot of people praying for us, and I am already feeling the positive effects of the healing process. Thanks so much to everyone out there who is praying for our family, we firmly believe that this is what is going to get me through this.

Visitors:
Ben, Deb's mom
Mom and Dad, Steve
Marc, Drew and Caren
Glenn

Where Do We Go From Here?

Deb and I anxiously awaited for our anticipated 9 am consult with the Oncologist, but that time came and passed. We waited as patiently as possible, but by 11 am, our nurse noticed the emotion in our faces and paged the Oncologist. She returned with news that he would stop by between 3 and 4 pm.

It was great to have visitors during the afternoon to help keep our spirits up. Even though we didn't know exactly what I was facing, it was good to share what we knew with our friends and family.

At 4 pm, when our Oncologist arrived at our hospital room for the consult, Deb and I were in great spirits. We went over my medical history, including my previous experience with melanoma when I was an undergrad in Chicago. At that time, the surgically removed melanoma was diagnosed Stage 0, which typically means that cancer had not progressed deep enough in my skin to reach the bloodstream. The Oncologist answered all over our questions the best he could with the information he had. He was optimistic regarding my recovery, saying that my condition was "serious, but not hopeless." His next steps for me were to get additional scans of my brain and bones to determine if the cancer had metastasized elsewhere in my body. In addition, I would be seeing a melanoma specialist at the Karmanos Institute.

Although I was still exhibiting pain in my left side, the consult with the Oncologist was a real lift for Deb and I, as we finally had some sense of what the future looked like for us.

When I had become ill, our DIY kitchen remodel was at a point where half of our new cabinets had been installed, but the critical (i.e. sink and dishwasher) portion was completely gutted. John, Ben, Deb's dad (Cal), Deb's mom, and Jorge (John's contractor back home) worked all day Saturday to build cabinets, prep the sink, and mud the walls. Derrick offer to be a liaison for me with the crew at the house, which was great considering all of Derrick's experience in the field. I can't thank enough all of the help we received from our family and friends aiding the completion of this project.

Thanks to Derrick and Mike for bringing Pizza Papalis for dinner. The day was capped with a visit from Deb's family, which was special for all of us. John, Cal, and Jorge returned home after the visit.

Visitors:
John and Carol
Jeff
Mike, Derrick
Deb's mom, John, Ben, Cal (Deb's dad)