I just realized that my last post left an open question regarding scan results. My March 18 update reported CEA under 1.0 but did not include an update on the scans. So I’m reporting to you all now:
The scan results from 3/18 were “all clear.”
Furthermore I went in for another CEA test this past Monday, (on my way home from the airport). This week’s CEA test was “under 1.0” once again.
That means I remain “in remission” or NED (No Evidence of Disease).
It’s been nearly two months since my last infusion. And I’m starting to feel a lot better. I have more energy and stamina. I’ve also had some challenges dealing with vertigo / dizziness this spring. And I’m happy to report that this too seems to be dissipating. The rash from the infusions has cleared up quite quickly as well.
I have my Fitbit and I’m setting goals for increased activity and improved diet. It has been about one month since I last drank soda. And I’m feeling good about cutting the empty calorie sugar water out of my diet.
These past couple months have been very busy indeed. They say time passes quickly when we’re having fun. And I really have been having fun! Between work and home I’ve been engaged in a lot of fun activities. We’re working on some very challenging projects at work and home has been consumed with Sarah’s wedding in Boston (which took place this past Saturday).
This month has included four trips for Connie and me as well. I travelled to Missouri the first week of April for a business trip. We all travelled to Boston the second week of April for Sarah’s wedding. Connie is in North Carolina this week on a business trip (which means I’m running the household solo). And next week I’ll spend some time in Chicago for a business trip as well.
Whew. We’ll need to catch our breath soon.
Time really is rolling and I think this year will remain in high gear.
Alexis receives her bachelor’s degree this May. Bryce remains engaged in sports playing baseball on the JV team and playing for a travel team this summer. Our summer vacation will be here before we know it. Football season will keep Bryce busy. And Alexis’ wedding on October 1st will be yet another major event. That leaves us with the 2016 holiday season…
Yep. Time will continue to roll by quickly for us all.
As I reflected back on the years, while preparing for Sarah’s “father of the bride” speech, I realized I have a ton to be thankful about. Words cannot describe how very thankful I am for all the time I’ve had on this great earth.
Some of you may recall a previous posting I did a while ago about an angel I met on my way to Ann Arbor. This angel told me that time on this earth is truly a gift from God. He pointed out that time is one thing that’s impossible for us to gift to each other. Yes, we can spend time together and we do. But we can’t extend someone’s life even one minute. He also pointed out that the expression “borrowed time” was somewhat an oxymoron. Only God can gift us time. And we can’t borrow it because we couldn’t pay it back.
And I’m so thankful for my time. For yesterday. And for today. Especially thankful given the seriousness of the disease I’ve battled.
I really have had a “wonderful life.” It seems like Sarah was just a baby girl dreaming about her wedding day not too long ago. And now she is all grown up, married, and doing so well. All my children are doing well. My family continues to grow. The blessings have been plentiful. And I couldn’t be any happier.
Thank you Jesus for the time we have. Thank you for guiding us day by day. For lighting our path and for keeping us safe. And for helping us up when we stumble and fall. Thank you Jesus for the time we have. This time is what you have made for us. Let us be glad and rejoice in it!
As usual. Thank you all for your continued prayers for a long remission!
I think they’re tired of looking at my face. They made me wear a mask when accessing my port. CEA is < 1.0. MRI is done and I’m drinking liquid chalk in prep for CT Scans.
I will know results of scans next Thursday.
This is the day that the Lord has made. Let us be glad and rejoice in it!
Putting the words together for this blog update took more time than usual. I’ve had mixed emotions this past week and I had to sort through them in order to finish this update. Death seemed to inundate the news this week:
- Kalamazoo Shootings (Feb 20)
- Family dying of carbon monoxide poisoning (Feb 21)
- Body of missing Kalamazoo man found (Feb 23)
- Six year old dying in a car accident (Feb 25)
- Shootings in Kansas (Feb 25)
Then the sad news hit home Wednesday – Kari Searles Jolink passed away. Kari’s story was well publicized throughout Marshall and it was very easy to see how well loved she is (see game dedication). Kari was Bryce’s teacher in middle school. I meet her face-to-face during parent-teacher conferences and open school events. And even though I really only knew her as Bryce’s teacher I felt so much more a connection after hearing about her stage IV cancer diagnosis about a year ago. Kari was a fellow-patient at University of Michigan Healthcare Systems (UMHS) and reading her blog (link to Kari’s blog) gave me a window into an all-too-familiar battle with cancer.
Kari was certainly in my prayers and thoughts from the first time I heard about her diagnosis. Along with so many others praying for her; I was so hoping to follow her story until it ended with her beating this ugly disease. Thirty-three is simply too young to die. And she was a mother of two beautiful children and had so much to offer this world.
It seems natural to ask the “why” questions in the wake of so much sad news. There is a lot of suffering and dying in this world. There is very real evil in this world as well. And it is hard to imagine a world absent of disease and hatred. Our limited human perspective makes it nearly impossible to understand how these ugly realities might fit together into a beautiful master plan.
While we may not know how all the pieces fit together the bible does tell us that there is a perfect master plan. It also tells that we will face trials and tribulations before we see paradise. And it tells of death coming like a thief in the night.
None of us know exactly when our time on this great earth will be completed. The simple truth is that we could be gone tomorrow, or next week, or next year. Or we may be lucky enough to live a hundred years.
Kari’s last words echoed loudly in my mind this entire week. “I have no regrets.” What beautiful words from a beautiful soul. And what a wonderful motto to live by. I pray that I will be able to say these same words when I find myself facing the end of time on this earth.
I think the key to saying those words is to Love as fully as you can; which in turn will lead to you being loved as well. So my prayer is to learn to love a little better with each passing day. That at the end of today I will “love” a little better than I did when I stepped out of bed. And maybe I will be as beloved as Kari was to so many people.
Thank you Kari for sharing your journey and your story. You have truly touched many more people than will be counted. And the way you fought the fight was so inspirational. May you be at peace and may your family be showered with Love from heaven above; through the many souls that you have touched along your journey.
Treatment 24 of 24
The day before the last Erbitux treatment. What? It was snowing like crazy outside. Announcements of school closings were being sent out by 5 PM. Unheard of… Am I going to have to reschedule chemo?
In four years I have never missed an appointment at UMHS. And I wasn’t about to miss the LAST treatment. I didn’t want to delay it even one day! No, we would simply have to leave a little earlier and drive a little slower…
So that is exactly what we did. Connie and I woke up around 4am. We left the house a little after 5am. I won’t blog about the fun we had dragging the garbage to the curb, through the foot high snow drifts (ask Connie about it sometime but remember to have a little sympathy for me as she tells of my failures).
After successfully “taking out the trash” we stopped at the gas station. No way did we want to chance being stranded on the freeway with a half filled fuel tank. And I have to admit; I never saw gas pumps covered in snow like they were. I really wondered if I should turn around while pumping the gas. The ride to Ann Arbor was certainly slow and somewhat stressful; but we arrived safely and on time.
The technician accessed my port as usual. Then another obstacle encountered. The port decided that it was not going to work. When I told the technician that this was my last chemo treatment she assured me “this glitch will not stop my treatment.” She proceeded to find a vein and drew blood the old fashioned way. And then sent us onto the infusion area.
After getting checked in and led to the infusion chair the nurse tried to draw blood from the port. It was simply not happening. So she ordered the “drain-o” stuff to dissolve the blood clotting and started an IV the old fashioned way (in my arm). Nothing was going to stop this final 24th Erbitux treatment.
A half hour after administering the “drain-o stuff” the nurse managed to get the port working. Soon the Erbitux was connected and flowing. And a few hours later we were done!
The final treatment was concluded. In spite of the snow. In spite of the fickle port. Yes, the final treatment was done!
The ride home was sunny and clear; a stark contrast to the ride there. And the CEA test came back as <1.0 once again.
Thank you all for your continued prayers. As we now enter the surveillance phase of this cancer battle we ask you to pray for a continued remission. Surely this is the real test; can we stay in remission? That is our hope. And yes, there is some anxiety as we face this next phase of the battle. But there is also a quiet resolve that whatever lies ahead will be faced knowing the Lord is with us.
“Love the Lord your God with all your heart,
with all your soul,
with all your mind,
and with all your strength.’
The second most important commandment is this:
‘Love your neighbor as you love yourself.’
There is no other commandment more important than these two.”
Mark 12:30-31 GNBDK
“And we ourselves know and believe
the love which God has for us.
God is love, and those who live in love
live in union with God
and God lives in union with them.
Love is made perfect in us
in order that we may have courage
on Judgement Day;
and we will have it because our life in this world
is the same as Christ’s.”
1 John 4:16-17 GNBDK
Today is a beautiful day!
So here I am today. Getting the second from last infusion of ERBITUX® (cetuximab). My last treatment will be on February 25, 2016. And today my CEA is once again “< 1.0” (under one). Which, as the veteran readers know, IS VERY GOOD! Under one means no sign of cancer!
On Friday March 18, I will receive CT and MRI scans and on the following Thursday, March 24, I will receive another CEA test and meet with Dr. Krauss to review results. As long as results are clear I will then begin monthly CEA blood tests and scans every three months (aka monitoring / surveillance). If I can make it five years through monitoring / surveillance I then would be labeled “cancer-free.” And believe me that is a label I will celebrate!
No matter what the future holds I am very grateful for today and for this past year! No evidence of cancer for over a year is a very good thing. No surgeries for an entire year is awesome. I consider myself extremely blessed. This has been a huge blessing. And there is not a single ounce of doubt in my mind – this blessing is a direct result of all your prayers. The power of prayer is very real. And I am so fortunate to have an awesome army of prayer warriors raising up my case to our Lord. Our prayers have been granted thus far. And I am so grateful. Thank you Jesus. And thank you prayer warriors.
I’m so looking forward to NO MORE CHEMO and NO MORE RASH. Wow, I won’t know how to act!
The doctor surprised us today with some other news. He reported that the latest research is coming in and supporting a long-time theory that Vitamin D can help prevent colon cancer. And he has asked me to start taking vitamin D immediately. The following are a couple of the many articles and resources available on this topic. No doubt that I will start a Vitamin D supplement tonight and I will be consciously planning to weave more vitamin D foods into my diet in the coming weeks.
So tonight I ask that you all echo my thanks for this past year of cancer free living. And ask the Lord for his continued grace as we transition off of ERBITUX and into the monitoring / surveillance process.
God is good!
Thank you all.
PS. Tim, you mentioned that you wanted to see a chart. Well, check out my CEA History page on my blog. And don’t forget to click on the image. This will take you to a Tableau public version of the chart. While it may not seem like “all that much” it is a single graphic that summarizes my entire cancer battle. Shows CEA level changing over time, various periods of chemotherapy treatments, surgeries, and other notes (if you select other notes in the annotation menu). I shared this with my doctor and hope they may add something like this to the UMHS health portal. He did mention that his is looking for a single chart that summarizes treatments.
PSS. Everyone, if you have time please watch this wonderful you tube video (link). I think it is so well done and the message really needs to be heard by everyone!
“God is our refuge and strength, a help always near in times of great trouble. That’s why we won’t be afraid when the world falls apart, when the mountains crumble into the center of the sea, when its waters roar and rage, when the mountains shake because of its surging waves. Selah” Psalms 46:1-3 CEB
Year four of my fight with stage IV colon cancer is quickly coming to an end. As I look back on the numbers and reflect on the times I realize it has been quite a fight with several highs and lows. A marathon for sure.
My daughter Anna married CJ on July 4, 2015. That was definitely the high for the past year. My daughter Sarah announced her engagement to Matt this past year. They will be married on April 16, 2016. My daughter Alexis also announced her engagement to Evan. They will married on October 1, 2016.
When talking about the weddings with someone recently they mentioned the movie “Three Weddings and a Funeral.”
And I quickly responded “Yes, except the title has to be more like Three Weddings and NO Funeral.”
Today is chemo treatment number 48 since beginning this battle. I have received seven different chemo drugs in differing mixes and concoctions along the way. I have endured seven surgeries. And have had countless doctor visits and procedures; including four colonoscopies, numerous CT, MRI, and PET Scans.
It has been an emotional roller coaster. There were very gloomy days. More than one “I-have-bad-news” phone calls from my doctor. Non-operable tumor diagnoses on two different occasions. An emergency room visit running a 103˚ fever. Even this year an unexpected spike in CEA causing a spike in anxiety as well.
There have been sad days. My father-in-law lost his battle with cancer. My Aunt Sonia dying from colon cancer. My cousin Taylor dying at age 14 from cancer. Countless people I have met in the Cancer Survivor Network (online support forum) losing their battles with cancer. Far too many people die from this terrible disease!
There have been highs as well. Non-operable tumors that became operable with chemo treatment. Successful surgeries. Successful chemo. REMISSION status! Many people in the online forum reporting long-term remission after a stage IV cancer diagnosis.
I couldn’t have endured this time without your support!
My wife Connie has been unbelievable; walking every step of this journey right by my side. She has lifted me up on more than one occasion. And her confidence and positive outlook has not waivered. She has assured me on more than one occasion that she knows I will survive this cancer. God has revealed his plan to her. And she won’t ever let me forget that the plan is for me to grow old with her.
My sister Mary has been with me every step of the way as well. She is the most amazing sister in the entire world. Her positive outlook has also lifted me up and given me strength on some very low days. She doesn’t think twice about giving her time to help. On many occasion she has picked me up at 6am to take me to UMHS for chemo. That may sound like a sacrifice but you need to know that she lives over two hours away from me. Yes, she leaves her house at 4am to drive to my house, only to continue the drive to Ann Arbor (another 1-1/2 hour ride), sit with me all day during chemo, and then drive me home.
My colleagues at work have proven more than amazing throughout this ordeal. They have raised up numerous prayers for my healing. And their understanding and generosity has been overwhelming. The day they brought boxes of delicious prepared meals warmed my heart more than they could know. And their hugs and kind and encouraging words have been well received.
My medical support team at UMHS are truly amazing. Especially Dr. Krauss. He has set a plan and we are working the plan. And the plan is WORKING! God Bless UMHS medical team members. They are all dedicated and caring. I am truly grateful to have them helping me.
Many others have also supported me along this journey. And your kindness and support is truly appreciated. You have touched my heart!
Today I received another CEA of under 1.0. And looking back on the numbers we have definitely made progress in this fight:
|Number of Surgeries||3||2||2||0|
|Number of Chemo Drugs||4||5||6||1|
|Number of Chemo Treatments||11||12||6||20|
|Work Days Missed||51||64||60||34|
This past year bearing the best numbers!
- No Surgeries in 2015!
- Only one drug used!
- Average CEA of Under 1.0!
When you factor life into the equation:
- One daughter getting married this past July
- One daughter completing her bachelor’s degree
- Two daughter’s getting engaged
- Two weddings being planned for April and October
- Older son moving to Chicago
- Younger son successfully completing his freshmen year and moving into sophomore status; along with playing football, baseball, basketball…
Well, we have had a one heck of a year; filled with love, life, and countless blessings! And we look forward to 2016 with hope and thankfulness overflowing in our hearts.
From the bottom of my heart.
THANK YOU for your prayers and support throughout this past year and prior years.
And thank you in advance for your continued prayers for a long remission and for a wonderful 2016.
May the good Lord shower you all with Love throughout this magical Christmas season. And May he lift your spirits and fill your hearts with joy. And may he bless you and your families with the most wonderful 2016.
No Evidence of Disease (NED)!
Thank you all for joining us in prayers of thanksgiving and for your continued support. And thank You Jesus for this beautiful day.
God is good.
Love and Light to you all,
Yesterday was a good day. Bryce played his fourth football game of the year. And the Marshall Redhawks JV team won another one! Way to Go Reedhawks! They have a 4.0 start this season.
The day started early, not unlike most chemo days. We woke up around 4am and jumped into the morning routine. Shower, dress, coffee, etc. We left the house at 5:30am and headed towards Ann Arbor. Blood draw at the cancer center was usual. We then walked over to the Bone Marrow center in Motts Children hospital (part of the massive UMHS complex). Because there were too many infusions scheduled they were redirecting overflow to Motts — and I guess I was in the “overflow.”
The experience at Motts was exactly the same as in the cancer center. Nurse: “Can you tell me your name and birthdate?” Me: “Yes, and I can tell you my MRN and CSN numbers as well if you like [smile].” After four years I know the rituals all too well. They use your name, birthdate, and UMHS assigned IDs to verify that the treatment they are about to give me is the treatment intended for me. It is comforting to know that the probability of getting the wrong medication is systematically mitigated to nearly zero. I just hope that the doctors will know the “right” medication to give you, that will FOR SURE knock out cancer. Unfortunately we may have to wait a while for this.
One noteworthy difference about the infusion center in the Motts facility was that it was very quiet and calm. Which I did appreciate.
My Erbitux treatment #15 went as expected. The plan remains the same. Erbitux treatments for one year. So there are another ten treatments to go.
More than half way done with the plan! So far, SO GOOD!!!
And I’m managing quite well through the treatments. I have been feeling more fatigued after treatments (possibly a cumulative effect) but I’ll take fatigue over outright sick any day. And, if the chemo results in a long-term-remission than all the nasty side-effects were but a small price to pay!
The best news is that my last scans (done in June) were “all clear” and the CEA blood marker continues to come in at “under 1.0.” As you experienced readers know, the CEA is a protein in our blood. Normal is under 3.0. If this marker goes above 3.0 it is an indicator of colon cancer activity. So we relish the under 1.0 reports every time they come in.
I was still waiting for the CEA results from yesterday’s test. I usually receive the results the same day, via a text message from Pam (Dr. Krauss’ nurse practitioner). She forgot to text them yesterday but responded to my inquiry text message that she would let me know today. I fully expected the “under 1.0” text from her this morning.
When the caller ID showed that I was receiving a phone call from UMHS my heart quickly sank into my stomach. I don’t usually receive a call unless there’s bad news. I put my meeting on hold and accepted the call.
It was Kim from Dr. Krauss’ office. Dr. Krauss asked her to call and let me know that the CEA was normal (e.g. under 1.0).
I share this “long version” of the story so you can appreciate the trials of waiting for test results. I tell myself don’t worry. “God knows what the result is before the test is even taken.” I need not concern myself with worrying. However, the reality is that it is hard not to worry. And sometimes it’s scary when the phone rings…
My next scans are scheduled for Monday September 28. And I am hopeful that the scans will continue to show “all clear” as well.
Thank you all for your continued support and prayers. I am truly blessed to have so many wonderful and caring people praying on my behalf.
Thank You Jesus! For this awesome rainy morning. And for the wonderful souls you have brought into my day, my week, and my life. My time with all of them on this great earth is so amazing. I can’t thank you enough for the countless blessings. Thank you Jesus!
I hope your Friday is the best and this weekend is better than the best!