Rambling (01/31/2013)

Counting my blessings…

Recently I read a post from an online friend on the Cancer Survivor Network (csn.org).  The gist of the post was about how cancer is always in the subconscious of the cancer patient’s mind. This post prompted me to think about the cancer emotional roller coaster.

I agree with my friend – the cancer issue seems to always be present.  I don’t think one day has passed since Halloween 2011 (when I was first diagnosed with cancer) where I haven’t thought about this ugly disease and the possible implications to me. Sometimes I’ll wake up before I should wake up, and my mind will wander. I can see how this disease can easily overwhelm a person.

But so far I have been able to cope well enough.

My faith certainly takes credit for this disease NOT overwhelming me. I know that Jesus is with me every day and every step of the way. And his perfect plan will surely prevail. And I will serve him as best I can, one day at a time.

I am truly a very blessed man and I don’t count my  blessings nearly as often as I should.

When I was seventeen I became involved with a Christian youth group called “Search for Christian Maturity.”  During the time with this group I learned a lot about how much Jesus loves each and every one of us. God is Love and Love is God! And I felt Loved!  And I felt God’s presence!

And I have been very lucky (e.g. Blessed) to have sooooo much Love in my life. I have always had a lot of Love in my life. I love God with my entire heart and soul! And Jesus Loves me beyond my comprehension. I loved my mother and father, and my brothers and sisters. I love my wife and all my children. I love my friends. I don’t think I have any enemies, but if I did, I would try to love them as well.

And I feel much love in return.

Love truly has been a blessing in my life! Singing has also been a blessing to me.

I grew up singing in church choirs through grade school, high school, college, and post-college. And one of the wonderful blessings from this experience is that the songs that we sung week-after-week, were burned into my memory (Thank you Sister Mary Johnathon). The lyrics from these songs are loaded with Love, wisdom, and life’s lessons, taken directly from the word of God. The melody and verses of these songs are rooted in my soul. Or perhaps it is my soul that is rooted in these songs?

I sing because I’m happy. Oh happy days. Be not afraid, I go before you always!  I once was blind but now I can see. On a hill far away. Just say the word and I will be healed. Just a closer walk with Thee! And he will raise you up on Eagle Wings! He who believes in me will never die. Amazing Grace. How Great thou Art. Here I am Lord, is it I Lord! Glory to God in the highest. Mine eyes have seen the Glory. Jesus is the Light, he’s the light of the world. There will be peace in the valley. I’m on my way to heaven. Like a bridge over troubled waters. And on and on and on and on and on…

Yes, cancer is always here for me.  And I will likely think about cancer every day for the rest of my life. And I will likely have some down and weaker times. However, I’m sure that Jesus will be walking with me every step of the way.  And cancer will NEVER overwhelm us.

Medical Update

We saw the doctor today and he restated the plan. I will start the second line of chemo today (FOFIRI and Erbitux). The hope is that these medications will stop/reverse the tumor growth. The Lord willing, the drugs WILL put the tumors in check. I will receive four treatments (today, 2/14, 2/28, 3/14) and then we will take a look to assess the progress. I expect that the CT and MRI scans will be done on or around March 19, 2013.

March 19 is a special day for me and my family.  It is St. Joseph day. I grew up going to Patronage of St. Joseph church and St. Joseph’s day was a very big event in our parish.  My middle name is Joseph.  My son’s middle name is Joseph. My mother passed away on March 19.  So, I will be
celebrating March 19 regardless of any tests or test results.  And I invite each of you to celebrate with me, every day.

May Love shine upon you today.
May God’s Blessings flow to you and your beloved.

Thank you all so much for all your support.

Sincerely,

Philip

ps. I recently read that hugs are good for your health! So, next time you see me feel free to give me a hug. And get a hug in return. 🙂

pss. Thank you all who came to the kareoke night last Saturday! It was simply wonderful! I thoroughly enjoyed your great company.

psss. Thank you too everyone who came to Sunday service with us! I am grateful for having been able to share that time together!

pssss. Congratulations Tony! Your play was excellent. The cast did an awesome job! And I’m looking forard to the musical.

Tumor Board Update (01/24/2013)

Forty nine and feeling fine…

On Sunday I turn forty nine years young. And I am lucky and happy to say that I feel fine at 49!

We went to University of Michigan Health System today to hear the recommendations from the Tumor Board. The surgeon we were seeing was on time for the appointment and was quick to give us the update.

The Tumor Board reviewed my case and the recommendation is to receive chemo therapy (surgery is not an options right now). If the chemo is successful in stopping the tumor growth I may be a candidate for surgery in the future.

He explained that there were two larger tumors in the liver that are operable; however there are also three additional smaller tumors that are located in different sections of the liver. Unfortunately these other lesions are too small to cleanly remove via surgery. If they were to remove the two larger tumors the smaller lesions might be left to grow / spread and negate the benefit of surgery.

He also reported that the PET scan showed uptake in a spot near the 6/1/12 surgery done on the colon. Even though the colonoscopy showed all clear this uptake was outside the colon (e.g. it wouldn’t be visible on the colonoscopy). This would likely require another colon resection in the future assuming the tumor growth can be stopped with the new chemo.

So the hope is that the Folfiri and Erbitux chemotherapy will

1. stop/shrink the tumors in the liver and outside the colon,
2. that no additional tumors show up and
3. I become a candidate for surgery.

Frustration!

So far I have encountered a couple different discouraging/frustrating bumps in my battle with cancer. The first was that I went months reporting symptoms to a couple different doctors in the Battle Creek cancer center before a colonoscopy was ordered. Might the colon tumor have been found much earlier if the good Battle Creek doctors had ordered a colonoscopy sooner?

Okay, problem fixed – move onto University of Michigan Health System, with more advanced equipment and more experience doctors???

And now we retrospectively look back and know that the numerous CT scans done at U of M showing a normal/healthy liver were actually not accurate. All the while we were thinking the liver was clear there were actually tumors growing. Who knows, it is possible that these tumors were present before beginning chemotherapy.

Why did the U of M doctors wait for rising CEA levels to do a MRI on my liver? Given that the liver is at high risk for colorectal cancer metastasis and given that MRIs are more accurate than CT scans in detecting tumors in soft tissue it seems like an MRI should have been done sooner, maybe as part of the pre-screening / baseline testing? If they had done an MRI sooner, perhaps we would have dealt with the tumor surgically and I’d be looking at a different prognosis right now?

I don’t raise these points to complain. I don’t believe in could-of/would-of thinking. However, maybe there are some lessons to be learned that might make a difference to someone else in a similar predicament? So what are the lessons?

1. If you have symptoms of cancer make sure the proper tests are done ASAP!!! Persistence may be required!!! Please get it checked out and be persistent! Catching it earlier than later makes a huge difference in the prognosis.
2. GET A COLONOSCOPY if you are 50 or older! Or if you have any symptoms of colon cancer! A colonoscopy is an easy procedure that could prevent a long battle with cancer!
3. Learn about the tests they use to check / monitor cancer. MRI, PET Scan, CT Scan, Chest X Rays… I will be posting this one in more detail on the Cancer Survivor Network as I feel I might have insisted on an MRI of the liver, knowing what I know now! Maybe someone in a similar predicament might benefit from my story!
   Cancer is certainly a difficult and challenging disease to battle.

The physical, emotional, and mental impact is significant! Trying to understand what cancer is and the different cancer treatments can be overwhelming.

I pray that a cure for this ugly disease is discovered soon!

God bless you all and thank you for your continued prayers and support!!!

I know God has a plan, although I don’t know what it is I’m certain it is the best plan for us. But I have to admit that I am hoping a cure is part of the plan and that the cure shows up soon.

Sincerely,
Phil

Onto some lighter news — I WON A CAR

This is a fun story! I never win anything and winning a car (albeit a used car) is cool!

We all get mail from the various car dealerships advertising the sale and guaranteed prizes. Well, if it is convenient I will visit the dealership to see if my key fits the new car or to check my numbers and see which prize I win. I don’t expect to win the grand prize but I’ll take the football or basketball or hat.

Well, I received a flyer from Cole Chrysler dealership in Marshall (just down the road from my house) and I stopped in to see which prize I won. As expected I received $5 gift card to Walmart (and was happy for this).

The sales person also explained that they were raffling off a mystery used car on Monday night at 7:30pm. He also explained that you had to be present to win!

This past Monday was a very snowy day. And when 7pm rolled around I almost didn’t go to the raffle. But then again, it was close and my step daughter Alexis agreed to go with me.

And when we arrived we realized that our chances were good – there really were NOT a lot of people there for the drawing.
So the drawing time came and I they picked my name! Yah, I won a used car.

When we arrived at home and were faced with all the questions about the prize, I realized I didn’t even know the year or mileage on the car. But I did know it was a white Grand Marquis, missing a hub cap, and had a crack in the bumper.

So if you know of anyone looking for a car — http://alturl.com/e7ds2

Another bump in the road (01/17/2013)

Connie, my sister Mary, and I arrived at University of Michigan Health System (UMHS) facility at 2pm today. The blood draw was completed quickly but doctor appointment was scheduled for 3:30pm (hurry up and wait). We were seated in patient room 37 at 3pm. I thought we might get to see the doctor earlier than scheduled. We ended up waiting in the patient room for an hour. The doctor arrived a little after 4pm and gave us the update.

The MRI shows two small tumors in the liver (sizes are 3cm and 1.8cm). The MRI images are also not completely clear and another MRI may be required before deciding on next steps. The oncologist reported that tumors in the liver are surely the source of the climbing/fluctuating CEA levels. The other news was that the CEA level went down from 40 on 1/2/2013 to 20 today (20 is certainly a big drop but far from the normal range).

The next step is for the UMHS Tumor Board to review the MRI results and recommend next steps. The possible next steps are:

– Another MRI done under sedation (hopefully with clearer results)
– Surgery to remove the tumors
– Chemo (folfiri and erbitux) to shrink the tumors, followed by surgery
– Chemo alone if the tumors are not operable
– Focal Radiation therapy

The best option that we can hope for is surgery. If the tumors can be surgically removed there is still a chance for full cure. If the tumors cannot be surgically removed the chemo treatment may reduce the size of the tumors and slow the growth.

The tumor board will do their review in the morning on 1/24/2013. I will meet with a Hepatopancreatobiliary Specialist/Surgeon on 1/24/2013 at 1pm to review the Board recommendations

Sad to note: I don’t think I know how to pronounce “Hepatopancreatobiliary.”  🙂

As I said in previous blogs, our current state-of-the-art technology is still far from perfect. How can the CT scan and PET scan show a clear/healthy liver and the MRI scan show two tumors? Can an MRI image that was deemed poor quality due to breathing be relied upon for surgical decisions? How can the “rising” CEA level climb and then fall like it does if the cancer continues to grow? Is there any significance to the large drops in the CEA levels? Unfortunately the doctors don’t have all the answers…

And so the fight continues, with partial and imperfect information. Your continued Prayers are hereby formally requested (and very much appreciated)!!!

I wish I had a little break between the initial chemo and what looks like a bumpy road ahead — but it is what it is.

Thank you all for your continued support and prayers.

God and Peace be with you.

Phil

PS. The pictures are from the Family photo session we did over the holidays (Thank you Liz at YourLittleWishes). These were the first two pictures completed. We’re looking forward to seeing the other pictures soon!

Dr. Visit (01/03/2013)

Scans are Clear but CEA continues to climb…

Today we went in for a doctor visit to review the results from the chest, abdomen, and pelvis CT scan (done on Sunday December 30).  The good news is that the scan shows all clear.  The bad news is that today’s CEA level jumped up from 19 (test from 12/13) to 40 (test done this morning).

Given the rising CEA the doctor wants to do more tests to see if he can find the source of the rising CEA (tumors?).  So now I’m scheduled for a colonoscopy (1/7), PET scan (1/15), and MRI (1/15).  I’ll receive a CEA test on Thursday 1/17 as well as meet with the doctor to review the results of these additional round of tests.

The lesson I’m learning from all these tests is to live life one day at a time,   And most importantly, resist fretting or worrying and to simply Trust in God.

Holidy Update:

Connie and I were lucky to enjoy a nice break from work over the holidays.  And Sarah came home for the holidays as well. And we all did a few things over the holidays as well, living life one day at a time!

On Saturay 12/22 were all attended the Scamihorn Family Christmas (Thank You Mary and Jim for hosting us all).  My entire family was present! The first picture below are of me, my brother and four sisters.  The second picture is of our entire family (a rare time where we are all together).

On Sunday 12/23 we attended the candle light Christmas services at First Wes in Battle Creek. The music and homily were exceptional! Christmas Eve was a quiet evening at home. Christmas day was a good day with presents, a delicious breakfast, and a day of games, movies, and family fun. On the day after Christmas we all went to Kalamazoo for a family photo session (in the snow as it turned out).  After two hours of photo’s we went to Burdicks and enjoyed a delicious family dinner. I am excited to see all the different pictures (hopefully we’ll see them soon).

Sarah’s flight home was on 1/30. Good news, her flights were on time this year! Several of us gathered at the Motor City Brewery to have lunch with her before dropping her off for her return flight to Boston.

On Friday 12/29 25 of us (friends and family) went to a K-wings hockey game!  We got to see and touch the Stanley Cup as an extra treat!

Towards the end of the holidays, in time for going back to work, I ended up with the head cold that is going around.  I think the worst of it is behind me now.

Your continued prayers are welcomed and appreciated!

And know that I continue to pray for all of you as well!

Love to all of you as we begin this new year!

Sincerely,

Phil.