I’m Doing Great! (03/19/2015 Update)

EasterHello friends and family,

It’s been a little while since my last update so I thought I would take a minute and blog.

I’m in Ann Arbor as I type, connected to a saline IV and waiting for the Erbitux to be delivered from the pharmacy. This is my third Erbitux treatment since my December 5th surgery.

Once again my dear wife Connie is at my side, doing her work from the Ann Arbor infusion center. She is a true road warrior! And today I felt good enough to do some work as well. Ever since switching Benadryl out for an alternative medication I tend to fair much better through this treatment. Benadryl caused me to fidget and fight and made me quite agitated. To the point where I wouldn’t even take my computer because I simply couldn’t concentrate.

Anyway, today I’m doing well!

I just received my CEA count for today. Under 1.0 again. This is a blood marker that is used to assess colon cancer activity and under 1.0 means no activity. So, latest scans were clear and the blood marker is indicating no new cancer growing.

The downside to the Erbitux drug is the rash. I have a pretty good rash right now but if this drug is killing any rogue cancer cells that may be trying to grow into a tumor, well, I guess I’ll just have to tolerate the rash.

And as we approach Easter, I will focus on a NEW BEGINNING, hopefully and prayerfully WITHOUT CANCER!

Once again, I thank you all for your continued prayers and support. I’m truly thankful for so many prayer warriors in my corner.

May God Bless and Keep you and may this upcoming Easter be a beautiful and joyous celebration for you.

Sincerely,

Philip


Phil Post Surgery Update (01/22/2015)

It’s been a while since my last update. And since so much has transpired I will try to do a high level update to cover the ground quickly. As a matter of fact I’m guessing that most of you already know some of the details as they have been communicated via word-of-mouth and other means.

The chemo I took before the surgery truly was tough. I suffered through more severe side-affects than any previous treatments. Nevertheless, we toughed it out through all six planned treatments before doing the surgery. That brings me up to 29 total chemo treatments (to date).

The surgery took place on Friday, December 5 as planned. However this surgery was a bit more involved than previous procedures. They ended up taking out 40% of my liver and gallbladder. In addition to that I lost blood during this surgery and required a transfusion. All that said, the surgery was a success:

  1. Three tumors were removed from my liver, all with clear margins.
  2. My post-operative CEA level dropped to less than 1.0 (very good sign that cancer activity has ceased)
  3. I made it out of the hospital in record time. I expected to be in the hospital for seven days following surgery. I was only in the hospital for 4 ½ days. Wow!

Being discharged early left me with expectations that maybe I was on the FASTEST road to full recovery yet? Unfortunately, there have been several challenges on this trip.

The first challenge was a bout with the flu. Just before Christmas I fell victim to the flu, not unlike many of you. The complication turned out to be related to the coughing brought on by the flu. The coughing caused trauma to the surgery site resulting in increased fluids draining from a surgical drain. I was down to a level where the drain would have been removed had this trauma not occurred. But instead of getting it removed the drain stayed in and the fluid levels stayed high for a lot longer than expected.

After the flu ended I seemed to continue to battle flu-like symptoms. Low-grade fevers, chills, increased fatigue. This was challenging in that we didn’t know if this was another flu virus or an infection. I started an antibiotic and a week later I seemed to be over these symptoms, however the drain activity continued remain elevated.

The surgeon suspected that the antibiotic and use of ibuprofen may have been affecting other symptoms so he had me stop these medications. So last week, not taking any medication, I seemed to improve. Including the flow of fluid through the drain – it started to diminish. However the low-grade fever, chills, and fatigue has returned (this week).

Yesterday we drove into Ann Arbor for an appointment with my oncologist (Dr. Krauss) and another appointment with my surgeon (Dr. Knol). The snow made it a much longer and more treacherous drive than normal but we made it there and back safely. This visit was to get scan results, talk about next steps, and follow-up on the surgical drain.

Dr. Krauss (my oncologist) quickly gave us the update that the scans were all clear, and the CEA continued to be under 1.0. He then discussed that he wants to begin a conservative chemo treatment in four weeks, assuming I continue to heal and don’t have any major setbacks. He is going to have me begin taking Erbitux once again. This is a drug I used in the past that seemed to have maximum impact on cancer activity. Unfortunately, the side-effects of this drug is a nasty rash. Reference the 2/16/2013 update where I blogged about the Erbitux rash.

If my healing progresses as we all hope he will add additional drugs to the treatment to make it a more potent concoction. Although he assures me it will not be as rough as the six rounds I did pre-surgery. The hope is that this follow-up chemo (over the next year) will kill any remaining cancer cells and prevent a reoccurrence.

After discussing the return of the chills and fever with Dr. Knoll (my surgeon), he decided to put me back on a different antibiotic and to begin the “process” of removing the surgical drain. In the past the surgical drains were simply pulled out while I was in the hospital. There was some discomfort but it was done quickly and really wasn’t a big deal. I guess I should have expected that there may be a different process for removing this drain given that it was in me for over six weeks.

The “process” is to remove the drain one inch every two days. And he warned me and my wife, the first inch is painful. And he wasn’t kidding. I about hit the roof when he pulled out the first inch yesterday morning. The issue with the first inch is that tissue begins to grow around the surgical drain and that is pulled lose when pulling the first inch out. Additionally, the tube has a larger coupler that has to be pulled through a small (and very irritated and sore) hole in the skin. OUCH!

In addition to the doctor visits we also learned that the insurance has denied a claim for a PET scan. They are claiming that the PET scan was not medically necessary. The odd thing is that the insurance has paid for PET scans in the past without issue. And so we stopped in to visit with a UMHS administrator to find out what to do about this financial issue. We need to file another appeal with the insurance company. I pray the insurance company will ultimately pay for the test as this is a significant bill that we do not have in the budget. As if the cancer battle is not enough?

Anyway, I had a rough afternoon yesterday and a tough night trying to sleep last night. Nonetheless with the help of a little Tylenol the pain seems to be dissipating.

So, here it is, week six since surgery. I’m beginning to work, still struggling with some fatigue, chills, fever, and pain. When I started this cancer battle I was told this is a marathon. And here I am (maybe near the end of this race?) and I feel like I’m hitting the wall. I feel the pain and fatigue every morning and evening. I struggle with the cold and chills and frustration. But we simply keep on keeping on! With faith that our situation will improve. And in between the drops of gloom we manage to do a lot of living and loving. Some of the highlights from over the holiday season…

  • Our family Christmas was wonderful. The house was filled with kids and dogs and activity. And the activity continued for a couple weekends after Christmas as well.
  • Matt and Sarah announced their wedding engagement. So in addition to planning CJ and Anna’s wedding for July 2015 we are now also planning Matt and Sarah’s wedding for April of 2016.
  • We scheduled a spring vacation for April 2015. We are going to visit Sarah and Matt in Boston. And we are all looking forward to our time with them.
  • We finally accomplished a few of our home improvement projects as well. Note that these projects were planned over a year ago so getting them done was a good feeling. Bust through the wall

So, maybe I’m hitting the wall? But my plan is to bust through the wall! And Lord willing, I’ll be cancer free on the other side! Whatever lies ahead, we will continue to press on, for we know that the Lord has a plan.

Your continued prayers are truly appreciated!

Love and light to you today!

Sincerely,

Phil

 

 


From Treatment Six to Surgery Seven!

Happy Thanksgiving

Surgery #7 is scheduled for 12/5/2014.  Your prayers are once again requested.

If you followed my blog you will know that back in August scans revealed a recurrence of three tumors in my liver. At that time the surgeon was reluctant to do surgery. He wanted evidence that the chemo would work against this cancer. So we agreed with chemotherapy treatment before surgery.

The plan was six treatments of a pretty rough regimen of chemo. These treatments definitely proved to be tougher than previous. They came along with some pretty harsh side effects.

CEA dropped from 18 to 11 after the first treatment. This was very encouraging. “Bring on this chemo!”

CEA is an indicator of cancer activity. Increasing CEA levels usually means cancer is on the attack. So the drop was very welcomed news as it was evidence that the chemo was working against the cancer.

But then comes some anxiety. CEA went up from 11 to 12 between treatments two and three. This was NOT what we were hoping for. But we endured and prayed and hoped and kept faith. CEA remained at 12 between treatments three and four. Again, not the news we wanted to hear. So we continued to pray and hope.

And then it was time for scans after completing treatment four. And the anxiety of waiting for results. Scans revealed no new tumors. The three known tumors seemed to remain the same. The chemo seemed to have put them “in check” and that was better than seeing them grow and flourish.

Finally another drop in CEA! Between treatment four and five CEA dropped from 12 to 9. And then another drop to 8 between treatment five and six. And another drop to 7 after the final treatment.

This was what we wanted to see!

Meanwhile Dr. Knol (surgeon) was now on board with surgery. Surgery is scheduled for Friday December 5. He also ordered a colonoscopy to be completed before surgery. So today I’m doing prep for the colonoscopy. This will be the third colonoscopy in three years.

And so once again we are asking for your prayers…

  • That the colonoscopy will come back clear.
  • That surgery on December 5 will be successful.
  • That recovery from surgery will be quick.
  • That post-surgery chemo treatment will kill off any remaining cancer cells.
  • And that I will live a cancer-free life for many years to come.

My prayer of Thanksgiving

Father in Heaven, I pray to you today. You are most merciful. You are most loving. You are most wonderful. And I praise your holy name! Thank You Father. Thank you for walking with me through this trial. And for giving me time to reflect and repent and grow. And for continuing to show me the way. Thank you for this day. And for this time on this wonderful planet. Thank you for the many blessing you have given to me. Especially thank you for my family and friends. The people I have come to know and love are certainly the most precious and cherished blessings that I have. For they teach me about Love and you are Love.

My prayer for healing:

O merciful God. Let your will be done on earth as it is in heaven. Use me as your servant. Show me the way so I may do your will. Father, grant mercy on me and send healing upon me. Be with Dr. Knol and the medical team at UMHS. Give them healing power as they plan and perform surgery. And be with Dr. Kraus and his team as he plans for future treatments. Give them all wisdom so they may direct maximum healing powers on me and others suffering from cancer. 

Two verses to ponder…

Oh, it’s hard to learn the lesson,
As we pass beneath the rod,
That the sunshine and the shadow
Serve alike the will of God.
—Anon.

I don’t worry o’er the future,
For I know what Jesus said;
And today I’ll walk beside Him,
For He knows what is ahead.
—Stanphill

Thank YOU all for your prayers, support, and understanding as we endure through this trial.

May God bless you and your families, and God be with you through this Thanksgiving holiday and throughout the Christmas season, and forever more after that…

Sincerely,

Philip


Five of Six (10/30/2014 Update)

Knockout Cancer

Well, I think a short update is overdue as I have not posted over the past few treatments. As you know, I’m still battling this recurrence. The plan we created this past August was to receive six treatments of FOLFOXIRI/Bev and then reassess surgery. Today, nearly three years after hearing the “you have cancer” shocker, I started treatment five of six of this plan. Treatment six of six is scheduled for November 13.

This treatment started with a long day at UMHC in the infusion area. There I received avastin first, followed by irinotecan, then followed by leucovorin and oxaliplatin. After this I am hooked up to the 5-FU which I receive through continuous infusion over 48 hours. In between these drugs I receive steroids, nausea and anxiety medicine, and other medicines to help manage the side effects.

This day was rough. Feeling nauseated, eye twitching, weakness, cold sensitivity, headaches, teethe/gums hurting, sore skin sensitive to touch. But the symptoms dissipate and change over time. Right now I feel decent (you can only sleep so long). And eventually I will feel good again.

In addition to the treatment we also had a doctor visit today as well. Last Friday I went in for an MRI scan and a CT scan. And yesterday I had to make another trip back to UMHS for a re-take on the MRI scan. Anxiety is also a problem when it comes to scan time. Although I try to remain at peace, knowing that Jesus is walking this path with me, I have to admit to some worry. I think about the possibility of seeing more tumors or growth in the existing tumors. And what the options would be if this is the case…

Today we received the results from the scans. Dr. Krause said “a tie is better than a loss.” So after four completed treatments the cancer in my liver was unchanged. The good news in this report is that the cancer did not grow. And the best news is that there were no new tumors in any other organs.

The next steps were also discussed with Dr. Krauss today. I will meet with Dr. Knoll (surgeon) on Wednesday November 12. We will hear his opinion about surgery. If surgery is determined as the next step I will receive chemo treatment six of six and then begin recovery / preparation for surgery. That means I will get to feel good as I prep up for surgery. If surgery is not an option we will regroup and reassess.

Another option that we discussed with Dr. Krauss was pursuing a second opinion from MD Anderson in Austin Texas. This facility is known for aggressive and leading-edge liver surgery. They are also the number 2 overall cancer center in the USA. So especially if surgery is not something that we can go forward with at UMHS we will likely pursue this option.

Another bit of good news received today — the CEA dropped from 12 to 9 over the last two weeks. Given that the CEA has proven to be highly corellated with the cancer activity, this news gives us hope that the progressive treatment with this chemo is having a positive affect at killing the cancer cells. When I first started the treatment CEA dropped from 18 to 11. However the last three CEA levels were 12. So seeing it drop from 12 to 9 is a small victory for which we will give thanks to Jesus.

In addition to battling chemo we have had a lot going on these days…

Three weeks ago, my brother George came to visit. We did a few projects around the house and enjoyed our time together. Thank you George for visiting. You know I always Love when you come.

Two weeks ago my best friend Kathy came over and cooked up a storm. She is an excellent cook and she made meals for the entire week, including cooking a turkey. And it was delicious. Thank you Kathy for all the light and love you send our way every day!

Then, this past Sunday, we had Connie’s sister Cathy and her husband Scott come over. They too are excellent cooks and they treated us with cheerful company and delicious food. And again left overs for this past week were a delight. Thank you Cathy and Scott. We love when you visit and we loved the delicious meals you made.

In addition to that we successfully painted two bedrooms this past weekend. I’ve been working with Bryce trying to get his room setup “just perfect.” And the paint is done. Thank you C.J. for helping with this work.

Then we have the story about Bryce breaking another bone (third break since June). This time he had a compound fracture of his left middle finger. We were in the emergency room for four hours. Luckily it was reset without surgery and it is healing fast and well. Thank you Jesus for fixing these breaks.

Most of all — Thank You — for your continued prayers. Please know that your support is truly important to us. Knowing that you are lifting us up in prayer gives me hope that the Creator of all Creation, King of Kings, Lord of Lords will take mercy on us and allow me the time and opportunity to continue to support my wife and family and see them grow in God’s Love.

Whatever God’s plan I know it is the best plan and ultimately I pray that I can be a good servant as I live out my days on this great earth.

I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth. (Psalm 121:1-2 NIV)

When the disciples heard this, they were greatly astonished and asked, “Who then can be saved?” Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” (Matthew 19:25-26 NIV)

NOTE: If you are reading this via Facebook, please feel free to like as a way of praying with us for healing.


RIP Earl Duane Devault

 

Duane and Phil 2013-10-08

I’m now 4 days since FOLFOXIRI/bev treatment two of six (treatment #25 overall). This round was a lot better managed. I am now eating more and fatigue is waning. Diarrhea was not as bad and although nausea was an issue I seem to be beyond this as well. And as I previously reported, CEA dropped from 18 to 11, giving us encouragement that the poison is killing the cancer.

So, while things were looking up, well… On Monday we received word that my father-in-law passed away. Luckily we managed to squeeze several visits into the last couple months so at least we had a chance to spend some time with him before he passed. He was on hospice care for pancreatic cancer and we knew time with him was precious. Good-byes on each visit proved to be progressively harder to do. Although my father-in-law was 81 he was a very active person, up until his final days. And it was very sad to lose him at this time. He did live a wonderful life and his legacy will most certainly live on — through his children, grandchildren, great grandchildren… He will be dearly missed by many!

My first reaction to the news of his passing was to plan our trip for the funeral (which is on Friday). We discussed when to go with each child and we planned for how to best deal with my condition along the way. I was even considering “depends” as a precautionary measure given the symptoms I’ve been dealing with…

However my wife was concerned about me making the trip. Given low immunity, a ten hour road trip from Michigan to Tennessee, stopping at unknown gas stations along the way, with four kids, my wife, and me packed like sardines inside my truck…  Then sleeping in an unfamiliar location, being so far away from home, trying to eat smart in restaurants… Adding to that the emotional stress of the funeral, and being around many family and friends… All that while trying to recover from the chemo fatigue, diarrhea, and other symptoms.

The last words I heard from my father-in-law seemed to give perspective to the decision. As labor-day weekend came to a close it was time for us to return home. My wife, fourteen year old step son, and I said our final good-byes in the garage and then proceeded to walk to my truck. We paused in the street to wave good-bye one more time while choking back tears… Then we just stood there in the street with tears in our eyes while we watched Duane come down the driveway. He was rapidly pushing his walker over the cement cracks, over the curb, coming right up to us. He hugged us one more time. And as he hugs me, he told me in no uncertain terms “You get better!

He made his point. And my wife made her point. And now my family is there and I’m here.

I’m so sad that I’m not with them during this celebration of life and love. Even though I know it was the right decision I am still sad that I’m missing this time with my family.

Cancer has once again succeeded in steeling from me. Cancer seems to do that every chance it gets. Taking time away from watching my children in plays or sporting events, hanging out with friends at football or baseball games, productivity at work, home chores, playing golf, etc…. The collateral damage from battling cancer truly sucks!

So here I am feeling sad…  For my wife who lost her father. For my mother-in-law who lost her husband of 50+ years. For my step children who lost their Grandpa (he loved them so much). For me who can’t be with my family during this occasion…

I guess I will simply wipe away my tears and focus on resting, walking, recovering, working…  So I can be as ready as possible for round three next Thursday.

I will do a lot of praying and a little crying and suck-it-up as I focus on “getting better!”

Thank you all in advance for your support. Please send up prayers for my wife, children, and all of us as we grieve the loss of Duane.

Duane, I know you are now in a glorious place! Celebrating with the King of kings and all the angels in heaven! Praise be to God!

Love, light, hugs to you all!

Philip


Treatment 2 (09/19/2014 Update)

Buckle my shoe

One two buckle my shoe!

Well I started treatment two of six yesterday. And it was a long day. We left the house at 6am and didn’t return to the house until 5:40pm. And I think I laid down and fell fast asleep and didn’t wake up until a short time ago.

We are hoping to do better at managing symptoms this round. The doctor modified the anti-nausea medication I received during the infusion. I also received a shot of another anti-nausea medication shortly before leaving the infusion chair. That medication was more effective; however it causes drowsiness which partly explains the long sleep.

Because of that medication we chose (for the first time) to use a wheel chair to leave the hospital. However, the chair was only used to wheel out our computer bags (which each weigh over 30 lbs). I still managed to walk myself out of that place.  :-)

Treatment two will continue through Saturday (I will disconnect myself from the portable pump on Saturday). And this Monday I will inject myself for the first time at home with a post treatment shot. Last Monday we had to drive back into Ann Arbor to receive this injection. The excellent nurse practitioner at UMHS was able to work with the insurance company and get the prescription approved for a home injection (Thank you Kim). Saving us this trip is very appreciated.

So far, so good. I had to force myself to eat some breakfast today. Usually eating is not a problem for me but this chemo has robbed me of all appetite. And I have to force myself to drink liquids as well. I’m just hoping the anti-nausea medication helps me keep it down.

And the best news of all for me was the CEA level. Two weeks ago my CEA level had climbed to 18. We suspected it would continue to rise given the recurrent disease. However, the important news was that the CEA had dropped from 18 to 11 after treatment one. While this is not definitive it is an indicator that this regimen is working.

Also, the doctor reported that we will do four treatments (two more after this one) and then do a round of scans. We are hoping that the scans will give us more evidence that the treatment is succeeding. If things continue according to Dr. Krauss’ plan, I will likely have surgery sometime after treatment six.

And today I pray…

Thank you Lord for giving me this time on this great Earth. Thank you for giving me so many beautiful people to share my life with. Thank you for my wife and five beautiful children. Thank you my father and mother, and six siblings. Thank you for my wonderful extended family. Thank you for my career and so many supportive colleagues. Especially thank you for the Love you continue to bring into my amazing life.

Thank you for the giving us this wonderful sunny day today. Guide my decisions and actions today so that they may be pleasing to you. Teach me how to share the Love you have put into my heart so that others will experience what I have been lucky to know for so long.

This I ask through Jesus Christ, our Living Lord, King of kings.

 

Hugs to you all today! And thank you again for your warm wishes, positive thoughts, and countless prayers for my family and myself.

 

Sincerely,

Philip


Chemo III

Knockout CancerWe met with the surgeon at UMHS on 8/28. After a lengthy discussion with the surgeon we agreed with the recommendation to start chemotherapy and reassess surgery after treatment. The chemo will be used to kill/stop the cancer. After verifying that the treatments have been successful we will then do another liver resection. However, at this point the liver resection will be completed with a higher degree of confidence that the cancer is truly in remission!

So here we go again. Like a bad sequel I am here at UMHS once again receiving chemotherapy. We are hoping and praying that this will be THE episode where the antagonist is defeated! Where the opponent is knocked out for good!

I once read that insanity is doing the same thing and expecting different results. Well, luckily this chemo will be a little different than the first two cocktails. The first eleven chemotherapy treatments were labeled as FOLFOX. That regimen included 5-FU, leucovorin, and oxaliplatin. The next twelve treatments were FOLIRI + Erbitux. That regimen included 5-FU, leucovorin, irinotecan, and Erbitux.  This cocktail will include 5-FU, leucovorin, irinotecan, oxaliplatin, and avastin. This is nearly all the drugs previously received plus avastin. The latest studies have shown that adding avastin (aka bevacizumab) can increase the effectiveness of the other drugs. And we are hoping and praying that is precisely what will play out in my case.

Side effects. Of course there are side effects. You know the part of the commercial where they talk very fast? Or the very fine fine fine fine print? That is the downside of chemo. It comes along with baggage. And there lies the “battle.”

So, yes, I’m ready for the battle. I’ll surely endure these side effects. I say bring them on! I’ll fight with every ounce of energy I have.

To see the smile on a future grand-child’s face.

To walk my daughters down the aisle and give them to their future husbands.

To see my talented older son in his first Broadway performance.

To watch my younger son play sports, graduate, and grow.

To rock in a rocking chair with my wife.

 I will fight!

 

Father in Heaven, King of Kings,

Thank you for today. For a chance to fight. For the energy to fight. Thank you for the love you have surrounded me with. Thank you for all my beautiful family and friends. Thank you for the countless blessings you have bestowed on me. Thank you for giving me peace and strength and endurance. Amen.

And thank YOU for your continued support. And for your countless prayers for my family and me. Please know that I truly appreciate each of you.

Sincerely,

Philip

 


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