Allen Ross – Nothing messes with me!

Just about 2 weeks ago, we finally took our first real family vacation since Luc was born.  The four of us have made a couple of trips down to San Diego, but those were to visit friends or family.  This time we decided to ventura a little farther, all the way to Yosemite National Park!

Besides the four of us, my mother-in-law also came along.  With luggage for five, including toys for Luc, his pack-n-play, stroller and 3 coolers of food, my Acura TL was definitely not big enough for this trip and my mother-in-law’s mini-SUV would have been to cramped for that long drive, so we rented a Toyota Sienna min-van.  I removed the middle seat in the 2nd row and folded down 2 of the 3 seats in the 3rd row so that everyone would have room while also having room for all the stuff we had to take with us.  I drove around with Luc the day before the trip and told him where everyone was going to be sitting.  After hearing it just once, he had the “seating chart” memorized and told me over and over again “mama sit there, dada sit there, am-ma (that’s how he says grandma) sit there, Ducko (that’s what he calls Dakota) sit back there and Luc sit here”.  hahaha!!!  I loaded up the van early Monday morning and we hit the road about 8:30 am.

About 3-4 hours into the drive (and after Luc and Dakota woke up), it was time for lunch.  Christi had seen these billboards advertising a mom-and-pop restaurant called Apple Annie’s in Tulare, so we decided to stop there.  And we were all glad we did!  The food was great.  I don’t remember what everyone had, but I know Christi loved her tuna melt and my triple-decker turkey club was mmm-mmm-good!  Luc liked the place because it had a small train that went around the walls above the tables, so that kept him occupied while he ate.  He also liked the coin-operated horse and rode it twice.  After lunch and a change of a diaper (Luc’s, just in case you were wondering), it was back in the car and on the road again.

We arrived at the south entrance to the park.  A park ranger took the entrance fee.  Dakota had never seen a park ranger in person before and started asking us all these questions.  It was pretty funny.  After a short drive, we arrived at The Redwoods in Yosemite where we had reserved a cabin.  For those of you familiar with Yosemite, or even if you’re not, this is in Wawona.  When I went to check-in the lady at the desk said we had one of the nicer cabins, and she wasn’t kidding.  3 bedrooms, 2 baths, a deck with propane bbq, game table and satellite tv.  From the deck you could see the Merced River.  I unloaded the van while everyone else put things away.  Even Luc joined in by helping put his diapers in the bedroom and handing stuff to grandma.  After loading the van, driving 7 hours and unloading the van, I was surprised that I still had energy.  I was actually feeling pretty good.  The game table converted into a small pool table and Dakota and I played several games (she’s actually pretty good).  Christi barbecued cheeseburgers for dinner and then we all relaxed.  Dakota and my mother-in-law each had their own bedrooms and shared a bathroom.  Christi, Luc and I shared the master bedroom.

The next day (Tuesday) we piled back into the van to do some site-seeing.  We drove through this very long tunnel to this place called, believe it or not, Tunnel View.  What a spot!  There is a small parking lot for you to turn off and walk around and see this breath-taking view.  There was El Capitan right in front of us.  There was Bridal Falls to the right.  I had never been to Yosemite before, and I was just in awe.  After taking pictures we jumped back in the van and continued on.

Our next stop was Bridal Falls.  After parking, there was a short (maybe 3 football fields long) walk to the falls.  Once again, WOW!  Every once in a while the breeze would pick up and the water near the top of the falls would fall at an angle.  After more pictures, it was back in the van and time to start looking for a place to eat.

We continued on the main road and headed towards Yosemite Village thinking there would be a restaurant or two.  We drove around but didn’t see anything, so we drove to the Awhawnee Hotel.  Well, we couldn’t find a parking spot there!  Fortunately, we saw two park rangers walking and asked them if they knew of a place to eat.  They told us there was a deli back at Yosemite Village or there was a pizza place at Curry Village.  Pizza it was!  We drove a bit further to Curry Village.  With the sun blocked by the mountains and the time of day, it was more than a bit nippy at Curry Village.  We all got out of the van and walked towards the food area only to have our appetites disappointed again.  The pizza place was closed!  There was a dining room, but that was reserved for some seminar they had going on.  UGH!!!  At this point, we decided to head back to the cabin to eat.  It was a long day with lots of driving, but once again I was still feeling pretty energetic.

Wednesday we hit the road again for more site-seeing.  This time we headed up to Glacier Point, elevation 7,000+ feet.  What a view!  You could see the entire Yosemite Valley!  We saw Half Dome, Yosemite Falls, Vernal Falls and Nevada Falls.  Looking straight down the cliff we could see Curry Village again.  It was amazing that everything we had seen the day before we could now see all at once…from 3,000 feet above it all.  Unlike the day before, this time I brought my video camera.  I got a great clip of my mother-in-law narrating the view.  She hadn’t been to Yosemite in over 20 years, but it was cute how she described what we were seeing and some of her memories from the last time she was there.

Next we headed back to Yosemite Village.  Before heading out that morning, I checked with the rental office about where to eat and they told me exactly where the 2 restaurants were in the village.  Before eating, we did some shopping at the village store.  Upon entering the store, Luc immediately wanted to know where the cars and clocks were.  That’s my boy!  Sure enough, he found a BIG clock up on the wall.  But he stopped obsessing over the clock when we came across a life-size replica of a black bear.  This thing was easily a foot or more taller than me.  Luc walked right up to it and said “dada, bear!”  I told he could touch it and he gave it a gentle touch on the leg and then a “high five” on the hand.  He couldn’t wait to show the others what he had found.  Fortunately, we found a small stuffed bear for him or else we would have wanted to take the BIG bear home.  While paying for the souvenirs, I happened to mention that we were going to go next door to eat and the cashier told us about a food court at the Yosemite Lodge just down the road.  She said they had a better selection than the places in town.  Lucky I said something, because the food was really good at the lodge.  There was a pizza station, sandwich/burger station and a pasta station.  They also had a good variety of desserts.

When we got back to the cabin, it was time to start dinner.  My mother-in-law had brought filet mignon.  Christi, having cooked the previous two nights, declared herself retired and nominated me as the new chef.  I’ve barbecued before, but never steaks as thick as these.  I wasn’t worried I would burn them, I was more worried someone might get ill.  So with my mother-in-law applying bbq sauce to some pieces and teriyaki sauce to others, I flipped the steaks.  Needless to say, my wife now knows I can bbq filet mignon.  It was really good, if I do say so myself, and the others agreed too.

The next morning it was time to head home and back to reality.  We all packed, I loaded the van and we hit the road.  Before leaving the park, we made one last stop to the Mariposa Grove of Giant Sequoias.  I couldn’t wait to drive through the giant sequoia, but to our surprise that tree had fallen several years ago.  It was actually a 4-mile hike from the parking lot to see the giant tree, so we drove slowly through the parking lot looking at some of the trees and then headed back to the south gate to exit the park.  We were hardly out of the park and I was already thinking about the next time we would come back.

On the way home we once again stopped at Apple Annie’s for lunch.  After taking a bite of Christi’s the first time through, this time Dakota got the tuna melt, which I think is now one of her favorites.  I had to go with my old stand-by, the triple-decker turkey club.  After one last ride on the horse and a diaper change, we headed over to the outlet mall in Tulare for the women to do some shopping.  While they shopped, Luc and I walked around the Nike store.

One of the bright spots on the trip was discovering how good a traveler Luc has become.  He did not complain once during any of the driving.  He was very content looking out his big window and watching for “big trucks”.  He played with grandma, had access to snacks and drinks and napped when needed.  We agreed that if he is going to be this good, we will definitely have to do more road trips like this one.

After a 7 hour drive plus the 1 hour stop-over in Tulare, we finally got back home.  Dakota and I unloaded the van, I took my mother-in-law home, unloaded her stuff, and went home.  Christi was pretty tired, but once again I still had energy.  I gave Luc a shower, put him to bed and sat down to get a breather.  Christi commented “how come you have more energy than me?”

That actually was a very good question.  It was sometime on Sunday or Monday that I noticed I was feeling different, like I had this extra boost of energy.  At the time I figured I was just feeling good that day.  But then I felt like that the next day too, and the day after that.  In fact, here it is almost 2 weeks later and I’m still feeling energetic.  Not that I was feeling tired all the time, but usually by the end of the day I would begin to get tired and poop out.  But not anymore, or at least not for the last 2 weeks.  So maybe my stamina is finally coming back.  All I know is I feel great!  And the timing of the trip was perfect.  We had originally thought about going to Yosemite several months ago, but we just couldn’t find a date that would work.  Had we gone during the summer, I’m not sure I would have been able to do all that driving and carry all the luggage and other stuff.  But I had no problem doing any of that on the trip, which made the vacation even more enjoyable for all of us.  The sites were incredible, but the thing I enjoyed most was seeing my family happy.  We’ve gone through so much this past year, with my diagnosis, me being laid-off and the financial issues related to that, it was time for some fun.  Everyone had such a great time.  It was as about as normal as we could get, as if there was nothing wrong with me at all.

And now some pictures…

Luc couldn't stop talking about mama and baby bear

Luc thought this guy was funny

Grandma and Dakota

One of my all-time favorite pictures

My pride and joy

Luc and his new friend

Let's go exploring!

Why I consider myself the luckiest man on the face of the earth!!!

Besides celebrating Christi winning the VIP party and the results of my scans, we do have something else to celebrate.  One year ago yesterday, October 22, 2008, I was diagnosed with Stage IV lung cancer.  No, I’m not celebrating the fact that I have cancer, but that I have survived with it for 1 year.  HIP HIP HOORAY!!!

I remember sitting in Dr. Goldman’s office with Christi.  We had just met him and were filling him in on the pain in my hip and other medical history while waiting for my CT scan results.  Of the 4 cancers it might have been, we figured I had thyroid cancer.  It made perfect sense to us since I’ve always had problem gaining weight.  And thyroid cancer can sometimes be treated with a pill.  While we were sitting there, Dr. Goldman got the results and told us the news that would change our lives forever.

So much has happened since that day.  I’ve been through 2 Gamma Knife treatments.  I had 20 direct radiation treatments on my hip.  I went through 12 weeks of very aggressive chemo, 6+ months of Erbitux and now Tarceva.  I went on disability and later got laid off.  My car got damaged in a hit-and-run in a parking lot and Christi’s car died.  The hot water heater sprung a leak and died.  Sounds like its got all the makings of a bad Country song!

But, like I tell people, there is a bright side to everything, even something as horrible as cancer.  Since February I’ve watched Luc the majority of the time.  Every father should get the opportunity to spend time with their young child like I have.  I missed a lot of things during his first year of life due to the pain in my hip and my treatments.  I couldn’t play with him on the floor, couldn’t play with him outside and, worst of all, I couldn’t carry him.  To hold him, I had to sit down and have someone hand him to me.  Since February, we have definitely made up for lost time.  He is like my shadow and follows me everywhere and repeats everything I say (ok, that part isn’t so good).  Even though he can walk now, he says “carry Luc” every now and then when he wants me to carry him around or just hold him.  Dakota has been a different story.  She is old enough to understand what was going on and worried a lot while I was going through my chemo.  We told her what she was seeing was just the side-effects of the medication, but she still thought it was the cancer.  I told her that one day I would be playing softball again, riding my bike and shooting baskets with her.  I remember the day I first rode my bike.  Dakota had this BIG smile on her face.  She told me later that she thought I had been lying to her about “coming back” and being able to do all those physical activities.  Now she sees me playing softball and about a week ago we played 1-on-1 basketball for the first time in well over a year.  She still worries, but I think she knows to believe what Christi and I are telling her now.  Now if I could only beat her in Round-the-World.  hahaha!!!

There was my family, friends and even some people I hardly knew who let me know they were there for me and to not give up.  The outpouring of support was unbelievable and it still gives me chills to think how many people are thinking about me and my family.  Whether it was an email, a text message or a card in the mail, everyone let me know they were pulling for me.  And not just from people I’m in touch with on a regular basis.  I heard from, and continue to hear from, people I have not seen in years.  Former classmates, co-workers and friends that you just lose touch with all contacted me when they heard the news of my diagnosis.  A few long-time friends would even contact Christi to see how she was doing and let her know that the Allen they knew was not going to give up.  It really meant a lot to me that people were making sure Christi was ok too.

And then of course, there’s Christi.  My best friend, my wife and the love of my life.  We’ve heard stories of families where one spouse is diagnosed with cancer and for various reasons the other spouse just can’t handle it all and calls it quits.  I know things have been hard on Christi, and this is definitely not the way we imagined our life together turning out when we got married 3 years ago.  But I think this whole ordeal has actually brought us closer and made our relationship and love for each other even stronger.  Since I’ve recovered from the chemo, we try and “getaway” once a month just the two of us.  Usually it is for one night, but it is just enough time to relax, have a nice meal, and forget about all the bad or stressful things going on back in the “real world”.  When we first got married we referred to ourselves as “Team Christi and Allen”, and that is one team I would never bet against.  I love you Christi!  You’re MY hero!

It is still hard to believe I have lung cancer.  Except for the side effects from the chemo, the stiffness in my right hip from the radiation treatment, my lack of stamina and of course what shows up in the scans, I feel fine.  I don’t cough, wheeze or feel ill.  Dr. Goldman says my heart and lungs still sound great.  I’m playing softball now on Sunday and Tuesday nights.  I’ve even started playing golf again, that is if you call hitting and chasing those little balls all over the course playing golf.  I work out (not as often as I should) and my stamina and strength are slowly coming back.  And hopefully soon I’ll come off disability, find a job and get back to work.

So thank you to all of you who have helped me reach my 1-year anniversary.  I feel like the guy on the Verizon commercial who says he has the big network behind him.  Well my network of supporters is WAY bigger than his network!  I’m already looking forward to my 2-year anniversary and beyond.  Like I keep telling Christi, she is going to have to put up with me for another 39+ years.

I had my 2-month scans on Wednesday.  I was pretty optimistic about this round of scans because my CEA counts had dropped and my back had stopped hurting since starting the Tarceva 100 mg about a month ago.  It’s usually not the results that stress me out though, it’s the actual scans that bother me.

I got to the scan place in Santa Monica and a “substitute” tech was there in place of the usual PET scan tech.  He inserted my IV on the first try without any trouble.  I refer to that as “one and done”.  He then told me my blood sugar level was fine, which surprised me because I hadn’t felt him prick my finger.  He said there was still enough blood on the IV needle and he doesn’t like sticking anyone more than he has to.  Right away, I knew this was going to be good day!  He injected the radioactive dye, gave me the special drink (vanilla flavor this time, and it was actually pretty good), and then told me to lay there and relax for 45 minutes.  While I was laying there, I emailed Dr. Goldman from my phone.  As you might have read in one of Christi’s earlier blogs, she won a VIP party for 100 people at Howl at the Moon at Universal City Walk.  We figured this would be a great time to also celebrate the results of my scans, so I asked Dr. Goldman if he could possibly get us the results before the weekend.  I figured it didn’t hurt to ask.

I was just about to doze off when the tech came back in the room and told me it was time.  So I changed in to the scrubs and headed off to the PET scan room.  The procedure takes about 20 minutes.  The only uncomfortable part is you have to lay there with your arms above your head.  Afterwards, my shoulders are sometimes sore and I’ve even had my arms fall asleep.  This time wasn’t that bad.

Next it was the CT scan.  This is the one I dislike the most.  The first 2 sets of “pictures” are fine, but for the next 2 they insert a dye (contrast) via the IV.  As soon as the dye is released in to my veins, I feel a sharp burning sensation.  When I had my first CT scan in October of last year, they told me I might experience 1 of 3 things…a metallic taste in my mouth, a warm sensation in my chest or a strange sensation through my abdomen.  I have experienced ALL 3 of these during every CT scan I’ve had!  A few seconds after I feel the burning in my arm, I get a strange taste in my mouth.  A few seconds later I get a warm feeling that starts at the top of my chest and works its way down to my lower chest.  Shortly after that, I have this feeling that, well, that fire is about to fly out of my butt!  By then the burning in my arm has stopped.  They take 2 more sets of scans and I’m done.  After changing back in to my clothes, its downstairs to wait for my brain MRI.

And wait I did…for almost an hour!  Finally, they called me and showed me to another room where I waited about another 10 minutes.  The brain MRI takes about 20 minutes.  Similar to the CT scan, they take some pictures and then inject me with a dye (no discomfort from this one though) and take more pictures.  The dye makes anything that is cancerous “light up” in the scans and is therefore more visible.  Afterwards, the MRI tech removed my IV and it was off to McDonald’s to finally eat (2 cheeseburgers, large fries and a large Coke).

Shortly after I got home, Dr. Goldman’s office called.  I was expecting a call from his in-house pharmacist regarding my refill of Tarceva, but it was actually Dr. Goldman calling with my scan results.  It didn’t hit me until after we got off the phone, but usually I have to wait a few days to get good news, and here it was only a few hours.  He said the scans looked generally good but wanted to go over them with me.

The CT scan of my lungs showed that the main tumor was still stable and unchanged.  I’m not exactly sure if the main tumor is only in the left lung or not, but when I meet with Dr. Goldman on November 3rd I will get more details.  However, the smaller nodules in both lungs had either shrunk or disappeared since my last scan in August!   SHRUNK!!!  DISAPPEARED!!!  This was great news in that this is the first progress we have seen in my lungs since I finished the “aggressive” chemo back in January.  The Erbitux was meant to keep the tumors in my lungs stable, so we didn’t expect to see any improvement.  However, there was some thought that the Tarceva would not only keep the tumors stable but possibly shrink them as well.  The pill seems to be working.

The four spots on my bones…1 on each hip and 2 at the base of my spine…were now slightly larger.  However, since my back is no longer hurting and my CEA counts were down, Dr. Goldman was not too concerned about the spots being larger.  He said he was going to forward the results to my radiologist, Dr. Ahn, for him to review but Dr. Goldman’s recommendation for now is to do nothing about the spots.  On the positive side, no new spots were detected and all of my vital organs are still cancer-free!

In my brain MRI they were interested in 3 areas…the 2 original spots found last year and the newer spot found this past August.  The good news was that the newer spot was no longer there, so the Gamma Knife procedure in August was a success.  Also, the remnant of the smaller of the 2 spots from last year has disappeared.  The larger original spot is slightly larger than it was in August, however, back in August Dr. Ahn believed this was inflammation from the original Gamma Knife procedure done last October.  Once again, Dr. Goldman did not seem too concerned and said he was going to call Dr. Ahn and update him and forward him the scans for his review.

I’m not happy that the 4 spots on my bones have grown, but these scan results are good news.  I’ve said that the main thing is to keep the tumors in my lungs stable knowing if anything else popped up, like spots in my brain or on my bones, Dr. Goldman and Dr. Ahn would be able to do something about it.  Now, after 9 months of keeping the tumors in my lungs stable, progress has finally been made.  I’m very curious to see what the next set of scans will look like after being on Tarceva for another 2 months.  I’m also anxious to know what my CEA count is now.  My next blood work is November 3rd.

So we definitely have something to celebrate, other than Christi winning the party of course.  And then, there is that one other thing we’re celebrating.

No, not that pill!  And definitely not that pill either.  No, the pill I’m referring to is Tarceva.

Just after my last set of scans (August 4) revealed a new spot on my brain, Dr. Goldman and I discussed switching from Erbitux (given via IV) to Tarceva.  Earlier this year, Dr. Goldman had a test run on the cells taken from the tumor in my right hip during my biopsy last October.  The results showed that I tested positive for a mutation in the epidermal growth factor receptor (EGFR) gene produced by my cancer.  Recent studies show that people with Non-Small Cell Lung Cancer (NSCLC) Adenocarcinoma that test positive for the mutative EGFR gene respond better to Tarceva than people who do not have the gene.  When Dr. Goldman found out that I tested positive, he was very optimistic that if the Erbitux ever became ineffective that I would respond well to Tarceva.  He also had told me that if more than one of the spots on my bones (one on each hip and two towards the base of my spine) were to start bothering me, instead of doing direct radiation as we had done on my hip last November, he would recommend switching to the Tarceva.  His reasoning at the time was that I’m still trying to get my strength and stamina back from the chemo and radiation treatments I had from November ‘08 through January ‘09.  If I had to get direct radiation in multiple areas now, it might weaken me and set me back.

When I went to see Dr. Goldman on August 11 for my weekly Erbitux treatment and 3-week checkup, he suggested that now might be a good time to switch to Tarceva.  My Gamma Knife procedure was scheduled for the following week, and I would not be able to get my weekly Erbitux treatment (they do not like you having a chemo treatment the same week as Gamma Knife).  Since I had to skip chemo that week anyway, he wanted me to consider making the switch.  Tarceva should maintain the tumors in my lungs just like the Erbitux.  However, unlike the Erbitux, Tarceva should also work on the 4 spots on my bones and possibly prevent future spots.  It might also prevent future spots from forming in my brain.  Dr. G said that since Tarceva is a small-molecular drug, it might be able to penetrate my brain whereas Erbitux is a large-molecular drug and can’t penetrate the brain.  He said I had four options.  Option 1 was to “stay the course” and continue the Erbitux.  Option 2 was to continue with the Erbitux and add Tarceva.  There is not much information regarding using both drugs at the same time.  Since both drugs have the same side-effects (mainly dry skin, rash and acne), using both at the same time could magnify the severity of the side-effects.  Option 3 was to discontinue the Erbitux and switch to the Tarceva.  And Option 4 was to enter a clinical trial where some patients receive Tarceva and another drug and other patients receive Tarceva and a placebo.  He said he would consult with another oncologist and call me and I told him I would discuss it with Christi.

Before leaving his office that day, Dr. G found out that I was not eligible for the clinical trial as patients who had previously used Erbitux were excluded.  So that left me with 3 options.

My big concern was discontinuing the Erbitux.  For me the key is to maintain the tumors in my lungs.  Up until now, I have been able to live with the four spots on my bones.  I’m not happy about the spot they found in my brain in August, but I knew they would be able to “zap” it using Gamma Knife, which is what they did.  But the tumors in my lungs have to remain stable and not increase in size or density.  When I get my 3-week checkup from Dr. G, he says my lungs and heart still sound great (knock-on-wood).  The Erbitux had been doing such a great job maintaining the tumors in my lungs all these months, that I was very apprehensive to discontinue it.  Christi and I had several discussions regarding the switch to Tarceva though, and we decided to make the switch.  I think what helped me decide was that Dr. G had told me that if at some point the Tarceva was no longer effective, I could switch back to Erbitux.

I called Dr. Goldman, but before telling him what we decided, I wanted to know what the 2nd opinion had said regarding my options.  The 2nd opinion was an oncologist from Cedars-Sinai in Los Angeles who I had also consulted as a 2nd opinion when I was first diagnosed last October.  Dr. Goldman said that the other oncologist suggested, and that he concurred, that I discontinue the Erbitux and switch to Tarceva.  Not only did the other oncologist agree that the Tarceva should maintain the tumors in my lungs and possibly work on the 4 spots on my bones and possibly prevent future spots in my brain, but he thought it could possibly shrink the tumors in my lungs.  After hearing that, I told Dr. Goldman that Christi and I had decided to make the switch.

Once that was settled, Dr. Goldman told me that the numbers for my most recent CEA test had gone up, which to him indicated that the Erbitux was becoming less effective.  If I hadn’t already decided to switch to Tarceva, this information would have made me switch.  CEA stands for Carcinoembryonic Antigen.  When I would go for my weekly chemo treatment, I would have blood work done.  Once a month Dr. Goldman would order a CEA test, which measures the amount of protein in my blood.  It is not unique, but it is rare for my type of cancer to produce protein in the blood stream.  Fortunately for me, mine does and Dr. Goldman is able to track my CEA count monthly to see how my cancer is doing.  When I was first diagnosed last October, my CEA count was 107.  Normal is 3.  When I completed my very aggressive chemo in January, my CEA count was in the 50’s.  Since then it had continued dropping each month, hitting a low of 22 in July.  Did this mean that my cancer was simply producing less protein or did it mean that I had less cancer cells?  Dr. Goldman said that between the drop in the CEA level and that previous CT scans of my lungs showed the tumors were less dense, he was confident that I had less cancer cells.  However, the blood test in August showed that my CEA count had increased to 38, which is why Dr. Goldman felt the Erbitux was starting to lose its effectiveness.

So on August 25 I went to Dr. Goldman’s office and picked up my prescription of Tarceva.  Instead of going to Santa Monica once a week for my IV of Erbitux, I would now take a Tarceva 150 mg pill each morning.

Just like with the Erbitux, you’ll know the Tarceva is working if you get a side-effect fairly quickly.  And just like with the Erbitux, I got a side-effect from the Tarceva pretty quick…and pretty severe.  Within a week I had very dry skin and a rash.  The rash was worse on my face and arms.  My skin was so dry that when I used cologne or sun block, it felt like my skin was on fire.  My fingers got so dry that the skin on my finger tips cracked.  I had to wear bandages on most of my fingers and it was painful to do simple, everyday tasks (which is a major reason I have not blogged in a while).  I saw Dr. Goldman on September 8, two weeks after starting the Tarceva, for my checkup and to get my monthly dose of Zomeda (bone strengthening drug).  Dr. G said that maybe the 150 mg was too much for me and that he didn’t think I’d have any problem switching to 100 mg.  He said he would see me again in 2 weeks and if I wanted to drop the dosage he would and if not then he would give me a refill of the 150 mg.  Well, by that Friday (September 11) I couldn’t take it anymore.  I left a message for Dr. Goldman to find out what to do.  He called me Friday night and told me to stop the Tarceva, that it was possible that there was still some Erbitux in me and that adding the high dose of Tarceva had magnified the side-effects.  He said to take a break until I saw him again on September 22 and give my skin a chance to recover.  Dr. Goldman really put my mind at ease when he told me that after being on Tarceva for only 2 weeks, my CEA count had dropped from 37 to 32.  Between the side-effects and the lower CEA count, he was positive that the Tarceva was working and that taking 11 days off would not be a problem.

It was amazing what happened by taking 11 days off.  My skin healed so well that it was almost the way it was before I started my treatments in November of last year.  My skin was no longer dry, my fingers healed and my face and arms healed.  People were telling me how great my skin looked.  And this was without antibiotics.  I stopped using the Tarceva, I switched from my scented soap to Cetaphil bar soap and used Cetaphil moisturizing cream on my dry skin.  I started up again on Tarceva on September 23, this time at 100 mg.  It wasn’t until this past week that I started showing any signs of acne on my face, but my skin is still not dry and I don’t have any signs of the rash.  I was a little worried that the lower dosage of Tarceva wasn’t working since I didn’t get the side-effects as quickly or as severe.  However, when I went for my checkup and Zomeda a week ago (October 6), my CEA count was down to 26!

So it looks like the Tarceva 100 mg is working.  We’ll know for sure this coming Wednesday (October 21) when I get my next set of scans…CT scan of lungs, PET scan of body and brain MRI.  For now, my skin is fine and I’m feeling pretty good.

I’d say I’m back, but I haven’t really gone anywhere.  I am sorry for not blogging in a while, and it is definitely not for lack of things to blog about as things have been quite busy around here.  I’ve been pretty busy during the day, whether it is running errands or running around after Luc.  By the time I can get on the computer at night, I’m usually just too tired to be on the computer very long.

But enough of these excuses!

It is after 11:00 pm right now and I am tired, but wanted to do a quick blog.  For those of you that read Christi’s blog, you know I started Tarceva a few weeks ago.  Just like with the Erbitux, the quicker I get the side-effects and the more severe they are is a sign that the Tarceva is working.  If that’s the case, I can honestly say the Tarceva is working very well!  My skin is very, very dry.  It almost feels like my arms and the back of my neck are sunburnt.  I have a rash on my nose and on my cheeks (again).  The skin on my fingers is cracking again, forcing me to wear band-aids and making it a bit painful to write or even type (another reason I’m going to keep this fairly short tonight).  As usual, I’ll get through all this, but for now I am just very uncomfortable.  I will update you all on the switch to Tarceva soon.

Besides Tarceva, there are lots of other things we need to catch up on.  Wedding anniversary, walking in sunshine (not to be confused with Katrina and the Waves “Walking On Sunshine”) and a trip to the zoo to name a few.  I hope to get to these in the next few days just as long as my fingers cooperate.  For now, I’m going to go moisturize.

This past week was definitely busy.  Sunday we drove home from our mini-vacation to San Diego.  Monday, spur of the moment, my friend Jorge got the idea to go to the Dodgers/Cardinals game.  So we drove down, bought tickets just outside the gate (face value too) and saw an exciting game, unfortunately won by the Cardinals.  Tuesday night I subbed in a men’s softball league playoff game.  We only had 9 fielders instead of 10, so I played right-field in a 3-man outfield.  I went 0-1 with 2 walks and made two running catches.  After the game I commented to Christi that I “felt very old”.  Wednesday I ran errands during the day and went to my support group that evening.  And Thursday…

Thursday I had the Gamma Knife procedure to remove the new spot on my brain.  This was the second time I’ve had the Gamma Knife procedure, the first being October 30th of last year just after I was first diagnosed with cancer when they found 2 tumors in my brain.  This time, my friend Ryan volunteered to drive me and pick me up.  I got to the Gamma Knife Center at 6:20 am, 10 minutes early…hey, I don’t want to be late for brain surgery.  I signed all the release forms, put on the hospital gown (I was allowed to wear my sweat pants, socks and shoes) and settled in.  The nurse gave me an Ativan to put under my tongue.  This is to “take the edge off”.  A short time later, the nurse put my IV in and took my vitals (blood pressure, pulse, etc.).  Then the fun part began (he says sarcastically).

One of the radiologists came in with the nurse.  The doc gave me four injections of Liticane, two on each side of my forehead and two on each side of the back of my head.  YE-OUCH!!!  This is to numb the four spots so they can attach the crown to my head.  The crown has 4 screws that do not go through my skull, they just penetrate my skin.  While tightening the screws I only feel pressure, as the Liticane has already numbed the areas (or I’m still in so much pain from the 4 injections I just don’t notice the pain of the screws…I’m pretty sure I’m numb though).  For me, the hard part is over.

With the crown attached to my head, I was then taken by ambulance across the parking lot for an MRI of my brain.  This is to make sure there aren’t any other spots and that the spot in question is still the same size and in the same place.  The IV was so they could inject contrast in to me for the MRI to make tumors more visible.  After the MRI it was back in the ambulance for another ride across the parking lot back to the Center.  Not long after arriving back at the Center, Dr. Ahn came in and said the MRI showed no new spots and the existing spot was still unchanged.  With this MRI machine being more precise, he said the spot was 4-5 mm and near the surface of my brain.

I walked from my exam area to the Gamma Knife room.  The crown on my head attaches to the Gamma Knife machine which keeps my head from moving.  The procedure itself is all done with calculations.  Dr. Ahn and his staff load information in to the computer prior to the procedure.  There are holes (either 120 or 240, I can’t remember) all the way around the crown.  The laser goes through these holes at the same time, all targeted on the spot on my brain.  The procedure took 18 minutes.  Unlike an MRI machine, the Gamma Knife is silent.  The only thing I heard was the cd they played for me during the procedure (of the few choices I had, I chose Classical music).  I also do not feel a thing.  If they hadn’t told me they were done I wouldn’t have known.  When the procedure was over, they disconnect the crown from the machine, I walked back to my exam area, and they removed the crown.  I was out of there by 11:00 am.

When I got home I was very tired, mostly from having to get up at 5:15 and not sleeping well the night before.  The rest of the day I sat around resting or sleeping.  Christi and Luc went out and got Kentucky Fried Chicken for lunch.  I ate pretty good, having 2 legs, some mashed potatoes and gravy, a biscuit and 2 helpings of coleslaw.  Not bad for someone who just had brain surgery.

That night I slept great!  When I woke up Friday morning and got out of bed, Christi asked me how I felt.  I walked around a bit and said “its as if nothing happened yesterday” and I went outside to feed the dogs.  Just like when I had the Gamma Knife procedure last October, I did not suffer any side effects from the procedure (knock on wood).  I felt so good that I was able to attend my Aunt Sylvia’s funeral on Friday, run errands and break down some cardboard boxes on Saturday and go to my Cousin Amy’s wedding today.

Yep, it was definitely a busy week.

This past Wednesday night, my dad called to let me know that my Great Aunt Sylvia had passed away.  She was 95.  I attended her funeral yesterday.

Since Wednesday night, a lot of memories of Aunt Sylvia came to mind.  She was my grandpa’s sister, making her my dad’s aunt and my great aunt.  “Great Aunt” was an appropriate title for her as she was a “great” aunt and a great person.  Her husband, my Great Uncle Leon, passed away just over 2 years ago.  They were two of my favorite relatives.  With Aunt Sylvia I could always count on 2 things:  she was always smiling and you would always get a birthday card.  Ever since I can remember, I always got a birthday card from Aunt Sylvia.  As a kid she would put a $5 bill in the card.  When the mail came you always knew it was a card from her by her distinctive writing.  After I married Christi, Christi started receiving birthday cards from Aunt Sylvia.  They weren’t near Christi’s birthday, but it was the thought that counted.  I know I won’t have a birthday where I don’t think of her.

Uncle Leon proposed to Aunt Sylvia sometime within the first 3 weeks that they met.  It was truly love at first sight and their love grew stronger and stronger as the years past.  They were married 57 years when he passed away.  While I was standing at the funeral, I thought to myself that they finally got what they always wanted…to be together forever.

I’m a bit behind, but its been a busy week.

We took a mini vacation last Thursday thru Sunday down in San Diego.  After Christi got home from work on Thursday, we loaded up the van and hit the road.  3 hours later we arrived at my brother-in-law’s house.  Since they were away on their own vacation, they said we could stay at their house, which was extremely nice and very convenient (and affordable) for us and the kids.

The whole point of the trip was to get together with some friends of ours from Chicago who were vacationing in San Diego.  “Getting together” was only part of the story.  We were actually meeting Julie and Kirk for the first time.  Julie’s brother, Tom, has Stage IV Lung Cancer and Christi and Julie met over the Internet through some cancer group.  Julie and Christi email a lot and sometimes talk on the phone, supporting each other through the good times and not-so-good times.  Julie and Kirk even sent me a big thing of balloons for my birthday party back in March.  On Friday, we went to the beach house they were renting to finally meet face-to-face.  Besides Julie and Kirk, we met their two children and Julie’s mom.  We had a blast!  We hung out at the beach for several hours and then went back to the house for a BBQ.  I had a great time getting to know them.  Kirk and I both like sports (even though he likes the Reds, he’s still a nice guy) and participate in fantasy baseball leagues.  I’m sure if we lived closer, we’d be going to some ball games together and playing some golf.  I also got to learn a bit more about Julie’s brother and how they are all dealing with his cancer.  We stayed late, or at least until Luc started getting fussy, and then said our good-byes.  They vacation in San Diego every year and we are already looking forward to seeing them again next summer.

Saturday we were able to meet some other new friends.  As I mentioned in a previous blog, Christi found Ken’s and Sheila’s blogs recently and we started communicating with Ken.  Christi mentioned to Ken via email that we would be down in San Diego and if he and Sheila were up to it we would like to meet them.  I guess Christi and Ken exchanged cell phone numbers, because when we arrived in San Diego they exchanged text messages and arranged for us to meet.  So Saturday we put Luc down for a nap and Dakota stayed at the house to watch him while Christi and I drove to UCSD Hospital.  Christi, as usual always thinking of others, stopped at the market that morning to get some goodies for them…lemon cake, grapes, etc…as Ken had been spending most of his time with Sheila in her hospital room.  Christi tm’d Ken when we arrived at the hospital and we waiting in the lobby.  She recognized Ken immediately from his photo on his blog.  Sheila had been in the hospital almost 2 weeks and from reading Ken’s blogs I wasn’t sure we’d get to meet her.  But fortunately, Sheila was having a good day and Ken took us right up to meet her.  We stayed for about an hour, sharing our cancer experiences, learning about each other and joking around.  For everything she has been through recently, Sheila looked great.  She even got out of bed to give us a hug and take pictures with us.  They are such a great couple and to see the way they look at each you can tell they are so in love.  I will never forget the hour we spent with them and I hope the four of us can get together again under better circumstances.

When we got back to my brother-in-law’s house, Luc had just gotten up from his nap.  Now it was family time.  We had told Dakota we were all going to go site seeing, which she was less than pleased about (to put it mildly), but we actually had a surprise for her.  We were going site seeing, but at Sea World!  Fortunately, the way to Sea World was the same way to the beach we had visited the day before, so she didn’t know the difference when we told her we were going to walk around the stores near the beach.  It wasn’t until we were almost in the parking lot that she said “Hey, where are we going?”  Boy, was she shocked!  The grumpy pre-teen with the attitude quickly changed back in to our sweet little girl with the BIG smile.  We had a great time.  Dakota and Christi went on the roller coaster, Atlantis.  Luc loved seeing the whales.  I just enjoyed seeing my family happy.  After about 5 hours, we left the park and went to dinner.  Once again Dakota was all grumpy about having to go to a restaurant, until we arrived at Dave & Busters and she walked inside.  She had a blast.  Christi and I took turns playing games with Dakota while the other watched Luc.  After a long day, we went back to the house.  Luc was a real trooper and surprised us by hardly complaining or fussing.

Sunday we packed, loaded up the van, and drove home.  Unlike the drive down when we left at night, the drive home on a Sunday afternoon took much longer, taking us almost 5 and a half hours to get home.

I had a great time.  Sitting on the beach relaxing, watching Dakota make sand castles down by the water made me feel so good and brought a smile to my face.  There was seeing the expression on Luc’s face the first time he saw Shamu.  It was great to see Christi relaxing and having a good time with Julie and her family.  I had a great time hanging out with Julie and Kirk and their family, like we were all old friends instead of having just met.  It was a privilege to meet and spend time with Ken and Sheila.  I will never forget how they looked at each other when we were getting ready to have our picture taken.  It was a great weekend.

“Will the Ross Family please come on down.  You’re our next contestants on The Waiting Game!”

That was how I had planned on starting my blog when I got home from my scans last Tuesday.  It was going to be about “scan day” and how we have to wait for the scan results, usually 2-3 days.  However, when I got home I was very tired and my stomach was a bit upset, most likely from one or more of the chemicals injected in to me, so I didn’t write a blog that night.  Last Wednesday, before I even had a chance to write a blog, Dr. Goldman called with the scan results.  When I saw his name on my phone I knew something was up.  He confirmed my suspicion when he said ”I have some good news and some troubling news”.

Dr. Goldman said the CT scan of my lungs showed that the tumors are still stable and unchanged since the last scan 2 months ago.  The PET scan showed that the four spots…1 on left hip, 1 on right hip and 2 on lower spine…are basically unchanged.  The brain MRI was the “troubling news”.  First, one of the spots that used to be a malignant tumor had grown from 4 mm to 7.5 mm since the last MRI 4 months ago.  Second, a new spot had appeared in the MRI.  Dr. Goldman said he had already been in contact with my radiologist, Dr. Ahn.  He said Dr. Ahn wanted to see the scans himself as he thought there was a reasonable explanation why the 1st spot had grown.  As for the new spot, Dr. G said Dr. Ahn would probably use direct radiation (Gamma Knife) to eradicate it.  He said Dr. Ahn’s office would be calling me to setup an appointment, but that I should touch base with them anyway.

Well, while I was on the phone with Dr. G, Dr. Ahn’s office left me a voicemail.  I called them back and setup an appointment for the following morning (Thursday).  Dr. Ahn was going to be at the Gamma Knife Center instead of his office but told his receptionist that if I could see him on Thursday, to schedule an appointment at my convenience and he would make time for me.

Dr. Ahn was one of the two doctors that performed the Gamma Knife procedure on me last October to destroy the two brain tumors.  He also oversaw my radiation treatment to destroy the original tumor in my right hip.

So Thursday I dropped Luc off at his grandparents’ in Oak Park and then headed back to Thousand Oaks.  Dr. Ahn and I reviewed the MRI.  The 1st spot was exactly what he expected.  He said that 35%-40% of Gamma Knife patients experience swelling of the dead tumor 8-12 months after the procedure.  He said he couldn’t say he was 100% correct, but he was 99% sure that the next MRI would show the spot had shrunk again meaning it was still the remnants of the dead tumor.  As for the new spot, it is 3-4 millimeters in size and located on the right side of my brain.  They will get rid of it with another Gamma Knife procedure similar to the one I went through last October.  When he said we could do it in a week or two, my concern was what would/could happen in the meantime?  I didn’t want to be driving around with the kids and have a seizure or stroke.  Dr. Ahn asked me “how do you feel?”.  I told him I felt fine and wouldn’t even know I had a brain tumor if they hadn’t told me.  He said that won’t change in the next few weeks.  Dr. Ahn quickly put my mind at ease when he said nothing would happen in the next few weeks and that we could even wait 3 weeks.  Two weeks was fine with me.  Dr. Ahn said the new tumor is so small that the Gamma Knife would most likely obliterate the tumor and he would be very surprised if it appeared in the next MRI.  He showed my MRI to his partner and they both agreed this would be a piece of cake to get rid of.

Obviously, I’m not happy that there is a new spot on my brain.  It is just another sign that my cancer is still active.  However, knowing that they can easily destroy the tumor and that nothing will happen between now and then definitely puts my mind at ease (no pun intended).  I know that spots on my bones and brain could pop up now and then.  Unfortunately, this is something Christi and I just have to deal with whenever I get scans.  One of the things that keeps me positive though is knowing how closely Dr. Goldman and Dr. Ahn are watching me.  With my CT and PET scans every two months and brain MRI every 2-4 months, any spots that appear can be dealt with before they are too big and become a problem.  I’m never going to have a scan that shows a tumor the size of a cucumber.  And when a tumor is discovered, like the new one in my brain, Dr. Goldman and Dr. Ahn already have a game plan in place.

With the Gamma Knife scheduled for next Thursday (August 20th), I’ll be skipping chemo next Tuesday as they don’t want any other treatments to interfere with the procedure.  Its not how I imagined spending a week off from chemo, but like I told Dr. Goldman and Christi, “let’s blast it and move on”.

I can not stop thinking about this couple in San Diego.  She has Stage IV lung cancer and is in a very bad place right now.  He keeps everyone updated on the condition of the love of his life via his blog while his heart slowly breaks.  I have never met them, only know them from what I read in their blog, but I feel his pain.  And they are not alone.  As you read this, there are thousands of stories just like theirs taking place.  This is not fair and this must stop.

For those interested, here is a link to Ken’s and Sheila’s blogs.  Ken is updating daily.

http://sheilawheatley.wordpress.com/

http://kenwheatley.wordpress.com/