Treatment 10 (08/29/2013 Update)

I Love my wife, family, and friends!!! God is Good to me!!!

Family and Friends 2

Today is Day 3 of Treatment 10. The treatment began on Thursday at 5:30am. The typical routine is for Connie and I to wake around 4:30am. We get ready, feed our two dogs and head out the door around 5:30am. First stop is for coffee and a breakfast sandwich. We then proceed to eat breakfast and drive to the hospital (I drive there and Connie drives home).

We arrive at UMHC between 6:55 and 7:05. The first appointment is usually at 7am. This first stop involves “tapping” the port and drawing blood. After the blood draw we either go to an appointment with Dr. Krauss or we go straight to the infusion area (every other treatment includes a doctor appointment). This treatment included an 8am visit with Dr. Krauss.

Dr. Krauss reported another <1 CEA level. And he pointed out that my blood work is excellent. He then looked over the rash, listens to my lungs and heart, and checked for signs of other possible side-affects. After the check-up he declared me ready for and Erbitux treatments 10, 11, and 12. He also scheduled scans (PET, CT, and MRI) for week of October22.

He brought up the CEA level and cautioned that while <1 is excellent we still may see an increase in CEA come post chemo treatments. He wanted to assure me that even if it goes up some we need to be cautious but not overly concerned. Of course if it doubles several times he will be concerned and we will do more scans and tests. I think he wanted to help with managing emotions that could run hot if faced with this future situation.

I am resolved that this whole matter is in the hands of our Lord. And I trust that his plan will prevail. And, although I don’t exactly know what his plan is, I do have faith that his plan is a perfect plan for me and all of us. And I am sure we will all be alright throughout any future challenges!

A little different pattern has occurred over treatments 9 /10 than previous treatments. I ended up sleeping at the hospital quite a bit this time. I still felt nauseated and fatigued throughout the treatment but was much more rested on the way home. My wife pointed out that I tend to fight the treatment and am restless and agitated throughout the process. This time I tried to relax and not fight the treatment and focus more on its healing affect (e.g. killing any cancer cells that may be roaming around awaiting a future attack!).

This treatment also included some training. To tell the training story I have to go back up to treatment 9. As some of you may know I come home from Ann Arbor connected to a pump that runs through Saturday afternoon (46 hours of continuous infusion). The normal routine is for the home care nurse to call on Friday and confirm a time for the Saturday disconnect.. If they don’t call on Friday the usually call on Saturday morning ,

So after 10 treatments of FOLFOX and 9 treatments of FOFIRI I didn’t panic when I the call didn’t come in on Friday. And I didn’t panic when the call didn’t come in on Saturday. But when the treatment was completed and still no call…

Well I didn’t panic anyway. I observed enough disconnects that I decided I’ll do it myself (Connie was at school and all the kids were out and about). I called UMHC and told them I didn’t hear from the home nurse and the treatment was done and I was going to disconnect myself. The attending nurse tried to talk me into waiting but I insisted that I can do it and would probably do a better job if she explained the process to me. She did good job explaining the procedure over the phone and I was a careful student and the process was completed by yours truly.

A little while after the treatment I reflected on the fact that I pointed the needles down when ejecting the air from the syringes used during disconnect. I did some Google checking and learned a little about pulmonary embolisms (air bubble in a vein) and then wondered if I might end up regretting my decision to do my own “disconnect”. Well I managed to scare myself first, then Connie when she came home… But I’m still here.

So, this treatment included training on the disconnect process, and little lecture on how important it is to learn before doing. Connie and I are now officially trained on the process. And now we are not dependent on a home nurse to complete the treatment cycle.

I attended the Promise Keepers event in Battle Creek (Kellogg Arena) last weekend. The event was excellent! The speakers were chosen men! Their knowledge of scripture was simply amazing and their ability to apply the scriptures lessons to our modern day challenges was equally amazing. I was also in awe watching over 4000 men worship and praise together. It was inspiring and moving. If you ever have an opportunity to attend and event I highly recommend. And if you are interested I bought a CD for one of the speakers that I will gladly share with you. The CD is from Rick Rigsby. His story was amazing and compelling.

On future blogs I want to talk more about the emotional and perspective changes that occur as I go through this cancer battle. I feel like I am going through a significant transformation as I endure through this war.

I first decided to start this blog for a few reasons. The first reason was somewhat selfish. I wanted to coral all of you into this battle with me. I was (and still am) convinced that the power of prayer will make a difference! So again THANK YOU all for your prayers and support.

The second reason I wanted to blog is because I thought it might be therapeutic for me. it offers an outlet for my thoughts, frustrations, and emotions.

A third reason for blogging is that I truly hope to help others, even though I wasn’t sure about how. I thought if I can encourage someone to get a colonoscopy or to follow up on symptoms (something MEN are programmed not to do), that maybe I could save someone from going through the things I have endured for the past two years. And I truly feel that if even if this blog resulted in one or two people avoiding this long cancer battle It would be worth every minute of my time. The fact is if it helped one, it actually helps many. Cancer doesn’t just impact the victim — It impacts the victim’s wife, and children, and family, and friends.

And now I am beginning to realize that the one thing I can do is blog more about the transformational process that is occurring in me. I think that everyone could benefit from this experience and I want to share more about it in the hopes that one or two of you might truly explore a new perspective on life and living and loving.

This transformation began for me on October 31, 2011 (almost two years ago). This journey included 4 surgeries, 22 treatments of radiation, 10 treatments of FOFOX and Oxaliplatin and 10 treatments of FOFIRI and Erbitux. This journey involved losing some pleasures in life like Golf and some play time with my thirteen year old step son. I have had many hours of down time because of fatigue and other side-affects from chemo. I have had highs and lows throughout the process. Tumor is not consistent with cancer… tumor has grown and is most likely cancer… tumor in lung is metastasis of the colon cancer… The FOFOX treatment isn’t working. The cancer is most likely on attack (climbing CEA levels)… The liver appears healthy in the CT scans… The liver has inoperable tumors (too many of them)… The FOLFIRI and Erbitux are working (drastically dropping CEA levels)… The tumors in the liver have shrunk and I’m now a candidate for surgery… The liver resection is successful…

And throughout this journey what changes have occurred? How am I different? How has my thinking changed? What is going on inside of my head and my heart?

This is what I will focus on in upcoming blogs. And I hope and pray that by sharing this part of the journey that two things might happen. First I pray that I will learn more from my family and friends about Loving and Living and God. Secondly I hope that you might learn from me as well.

So expect some future blogs to reflect on thoughts, emotions, and perspective.

Lord God, thank you for another day on this wonderful planet you have given us. Thank you for the family and friends you have surrounded me with. Thank you for the challenges and storms in life as they lead us to new levels of understanding and growth. Thank you for the countless and unrecognized blessings you bestow on us. Let your will be done today and every day. All Glory and Praise to you Lord Jesus Christ. Amen

God be with you all.



6 Comments on “Treatment 10 (08/29/2013 Update)”

  1. Connie says:

    Dear Husband,

    You are the strongest and most amazing person I know. You are my rock when I should be yours. You are truly my best friend and I feel lucky to be your wife. I love you always and forever!


  2. Mary Salens says:

    You are my hero and I will always appreciate your generosity in sharing everything you have. I love you very much and thank Fr. Solanus for his blessings and help on your journey.

  3. JillinoisRN says:

    My cousin was recently diagnosed with a neuroendocrine tumor in her rectum. Even as an RN, I’m finding myself feeling so ‘dumb’ about all of the various kinds of cancer (and I’m a leukemia survivor, and my mom had bilateral breast cancer with lung and brain mets; my dad had thyroid cancer last autumn). It’s everywhere. Thanks for your posts about your experiences.

  4. Krea Gregory says:

    Phil: I’m looking forward to more from you as you share your journey. As I was reading what you wrote a few days ago, I was reminded of a line from a song I like to sing: “When you cannot see His hand, trust His heart!” God is so good — all the time!

  5. Karen says:

    Phil- Thank you for sharing your stories and thoughts with us- you’ve been, and continue to be, extremely inspirational to many- your journey has not been an easy one; however, your family, friends, and our wonderful creator have all been alongside you the entire and will continue to walk with you! Hope to see you at a football game or two!

  6. jdeihl1112 says:

    God bless, I am getting ready for surgery after first round of chemo and radiation.

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