cancer humor.

While cancer is certainly no laughing matter, we find that the ability to laugh is part of the success. We would like to share some humor from our first week of Health Camp:

On Monday at noon, Mike was getting ready to leave work for UNMC for his first treatment. While he clocked out he was applying some chapstick. Scotty said "That's not going to help." Nephew Cole added "Yeah, you need like SPF 1000."

Mike's favorite thing to say on Tuesday (to anyone who would listen) was "Today is #2... and it feels like #2." Smile. He added that Wednesday would be the 'turd' treatment

Then we have sister Melinda who wrote a poem in honor of today. It is entitled "27 Treatments to Go - 9/21/11"

There once was a guy named Mike... who loved to ride his bike.

He pedaled all the way to the city... for a little radiation-ditty.

Twenty-seven treatments to go... but we can have fun, you know.

So as you guessed, this rhyme is not done. I'll be adding to it until the battle is won!

xxoo, Melinda

day 1

We are well into our first week of Health Camp - and the campers are surviving. We are even doing well. We thank you for your prayers because WE HAVE FELT THEM. Day One was difficult. The stress of the unknown looms large. Making it through the first day was a big accomplishment.

I heard Mike say to his sister on the drive home: "It's freaky. It kind of freaked me out. I had to have them unsnap the mask a couple times to cut a hole to make it bearable." The photo above shows how tight the mask over his face and head is - the marks show for a good 10 minutes after he comes out. I got a little freaked out when I went into the room before he started to bring him a CD and could see a figure on the table covered with a blanket wearing Mike's shoes with his head attached to the table via a white mask. It is unsettling, especially when they make me leave the room and I could not see that he is comfortable.

Within minutes after his treatment started I did feel a blanket of peace that I can only attribute to the prayers of the saints. As I prayed, God gave me words to ask for Warrior Angels to stand beside Mike and filter any harmful thing away from him. When I heard that the mechanisms on the machine that direct the dosage of radiation are called "feathers", I got even more encouraged to pray that the feathered wings of the Mighty Spiritual Warriors would filter and protect Mike from any harmful radiation.For the first week Mike has a CT scan in addition to the radiation (to confirm that everything is lined up correctly) so he is masked for about 30 minutes. It will be slightly less time in the mask starting the second week without the scan. On the first day (and every Monday) we meet with Dr. Zhen. This Monday he reviewed images of Mike's treatment plan with us. The top photo shows that every time a radiation dose is given, it is in five different gradations from heavy (darkest) to light (lightest.) The middle photo shows the location of the radiation dosage from one angle. Believe me, your understanding of all this is about the same as ours. We are comforted that they attempt to be very precise.

Thanks for journeying with us. The encouragement and prayer support are palatable.

health camp.

On our drive to Minneapolis this weekend we pondered the pending start of radiation treatments on September 19th. As we discussed the importance to the next few weeks we decided to view this upcoming leg of the journey as our 6 week HEALTH CAMP.

We established some simple guidelines:

-Radiation five days a week

-Physical Therapy M-W-F (en route home from Omaha)

-Anytime Fitness Workout 3 times / week

-Massage once a week

-Earlier bedtime

-An even stronger emphasis on healthy diet with concentration of protein shakes, protein snacks (string cheese & Greek yogurt) - and reducing / eliminating coffee intake

We like the focus on health (instead of cell death). It is a good focus to keep Mike's muscle strength up, and diet is critical because losing weight is a concern with mouth radiation. We are writing this on the blog because it strengthens our resolve. And because basically we covet prayers for all of this.

Let's start HEALTH CAMP!

good medicine.

This weekend Mike and I went to Minneapolis, Minnesota for the season opener of a Prairie Home Companion. The first live performance and radio broadcast of the season are always followed by the Annual Meatloaf Supper & Street Dance. It was the third time we had the privilege of attending these opening festivities and it was wonderful as usual. The music was amazing, the humor & stories were wonderful, the weather was perfect.

At the beginning of each Prairie Home Companion show, guests are encouraged to write comments / greetings to the host and they select some for Garrison Keillor to read aloud on the air during the broadcast. This is the second time they have read Mike's on the air! The first was last October when Mike asked for "God's Speed and protection for Marine son Baker Blanc as he left for Afghanistan" - and if you listened to the broadcast this weekend you heard Garrison read "And Mike & Karen happily welcome our Marine son home after a tour in Afghanistan - thanks for keeping your head down."

I thought I would tell you what I wrote:

"Husband Mike starts radiation treatments on Monday, but I think the best way to cure cancer is a big dose of Prairie Home Companion - so here we are. Mike & Karen Blanc Oakland, Nebraska". Even though GK didn't read it on the air, I thought you could read it on the blog. smile.

keep praying.

We just got a call from UNMC and Dr. Zhen is still working on Mike's treatment plan and asked if we could postpone starting until Monday, September 19th at 2:15pm.

I cannot help believing that Dr. Zhen is feeling your prayers and guidance for the perfect plan for Mike. I am glad to think much time, energy and thought is being put into Mike's plan. Please keep praying... we are humbled and blessed to know there are prayers being lifted up for us - and guiding the doctors.

embrace what scares you.

If you don't think this is one of the scariest things you have ever seen - we have different buttons. It is scary, but God is there.

On Friday Mike had a CT scan and had his radiation mask made. The CT scan will be used along with the pre-surgery CT scan to map Mike's treatment area. The mask is used to hold his head tightly and securely in place during the radiation treatments (so he doesn't move his head and have radiation shot some random place we wouldn't want it to go.) The bottom photo was taken by the nurse right after the mask was formed around Mike's face and they are cooling it with towels to harden it faster. Mike's comment was comforting to me: "I like the mask for the reason that it will keep my head perfectly still. If they told me to 'hold still' on my own I am not sure I could do it." He did say it was even hard to swallow in it because it is so tight. (I get light headed just writing that.)

We start our treatments this Thursday, September 15th at 2:15pm. And we will have them five days a week for six weeks. The 2:15 time slot was picked because 1.) Mike wants to go to work every morning whenever possible and 2.) there is a certain machine that they want to use that is available at that time. We got to visit the room where Mike's treatments will be administered. The walls and ceiling are painted like it is a tranquil outdoor setting. There is an iPod port so Mike said he is starting with Alan Jackson's Hymns CD to be playing in the background. They said we should plan on about 20 minutes treatment time every day. That allows for getting on the table, and the machine starting, stopping, and changing positions, etc..

Please Pray:

-For the Dosimetrist & Dr. Zhen this week as they design the actual treatment plan. THIS IS SUPER IMPORTANT. This is what determines exactly what gets radiated and from what angles and for how long. The Dosimetrist is the person who actually designs the plan - the one who avoids the critical structure and targets only the potentially cancer-laden areas. Dr. Zhen works with him and sets up the fractions per day and the total dose. Please join us to pray for these critical decisions.

-And for inner and outer strength for Mike. For effective radiation with as few side effects as possible. For "not a scratch to be found on him" at the end. (Daniel 6:23)

the answer: in omaha.

The answer to the radiation question is: UNMC. We have officially decided to have Mike's radiation treatment to his left neck at the University of Nebraska Medical Center in Omaha.

After having UNMC agree to the lower dosage of 60 grey, and after having Dr. Thorstad confirm that he would have to target the entire surgical bed as well, we had a peace about staying in Nebraska for our treatment.

This was a harder decision for me because I did not want to make "convenience" a factor over "most excellent medical care". I think we can do both here.

What stands out most in my mind is a conversation that Mike and I had about ten days ago where he took time to tell me that radiation might be hard on him and he would like to have the support of family and a caring community around him while he did it. He said he would like to sleep in his own bed, and eat my food around our table if he didn't feel good. He said that he wants to be able to go into work as he can. He wants to be around to watch progress on the house. He said that the traveling back and forth made him tired to think about... I think that all of the above will help him to heal and cope.

We have an appointment with Dr. Zhen on Friday, September 9th at 10am to have Mike's radiation mask made which will hold his head still during treatments. Please pray for us - because this is a scary thing.

daniel and michael.

A big factor that comforted me in this decision was a verse that leaped off the page at me when I was doing my Daily Walk.

"Not a scratch was found on him because he had trusted in his God." Daniel 6:23

It is hard to explain how it works, but sometimes God takes His word and spears it straight into your heart. When it happens, you know that you know that you know. smile. Anyway, God comforted me with these words from the book of Daniel and I am praying that the radiation will eradicate the cancer, but without leaving a scratch on Mike.

the tumor board.

It is time I get around to updating the blog. The decision to decide where to have our radiation treatments weighed heavy on me...

There were three issues for the UNMC Tumor Board:

1. Radiation + Chemotherapy: Everyone agrees that the 3-5% edge (probably smaller) is a dealer's choice with a p16 consideration. They agreed to let us opt out of their recommendation for chemotherapy AFTER radiation.

2. One Side or Both Sides: The board agreed that it is reasonable to NOT radiate the right side of Mike's neck with the left side.

3. Using a Lower Dosage: This is where Dr. Zhen and the board did not feel comfortable. 66 is the standard lower dose at UNMC and we asked for 60. We heard Dr. Zhen and the board say that they were not comfortable with 50-55 which were numbers that Dr. Haughey uses in his research because they fear it might fail to kill the cancer.

After hearing the tumor board's recommendations I had to call Dr. Ken Zhen and find out what number he was comfortable with. He wasn't comfortable with 50-55 and we weren't comfortable with 66. After some discussion Dr. Zhen agreed to 60 grey maximum, but said that he would want to treat Mike's entire neck area / surgical bed and not just target the affected lymph nodes and areas immediately surrounding.

So I made another call to St. Louis where I talked with radiation oncologist Dr. Wade Thorstad. You have no idea how much I appreciate his kind, wise and caring counsel. The bottom line is that Dr. Haughey and Dr. Thorstad are pioneers in their field and their numbers will probably be the standard for p16 positive cases in about 10 years. For now the bulk of the cancer community feels comfortable using old clinical trials even though they don't reflect the unique behavior of the p16 cancer. Dr. Thorstad said that without a CT scan taken before Mike's second surgery, he would create a treatment plan similar to Dr. Zhen's (targeting of larger neck area) because he would not have the "map" to localize the treatment area.

This was the last piece of this puzzle.

meeting dr. zhen.

As you know it was back to University of Nebraska Medical Center this week to explore our options for having our radiation done here. We met with Dr. Bill Lydiatt on Tuesday and met Dr. Ken Zhen on Friday. Sorry for the delay in posting but to be honest it was just too overwhelming. We needed a few days to step back from it all. In fact, Mike and I made a conscious decision not to talk about it on the drive home from Omaha... or for two days. We will have a heart to heart pow-wow later tonight. The Nebraska Medical Center is an impressive place with very friendly staff wherever you turn. Dr. Zhen's nurse was no exception, and I liked her because she was a straight-shooter. We conversed about our desire to avoid radiation but how we know we need to step into the radiation camp now to clean up the traces of cancer that linger in Mike's left neck. We talked about how devastating it is to lose salivary glands, taste buds, dental health and swallowing function. Nurse Cindy said "Nothing in life is tougher than radiation and chemotherapy for head & neck cancer. If there is anything harder, I'd like to see it." She is also the one that reminded us that radiation treatments are accumulative, and we learned that there is cell death for two weeks after the treatments end before the re-constructing starts. (Cindy's comment is referring to radiation used as the primary treatment and followed by chemotherapy - but it is sobering none-the-less.)

There was a very cool God-thing that happened when we met Dr. Zhen because the first words out of his mouth after greeting us were that "he was waiting for a call back from his friend Dr. Thorstad about our case." Believe it or not, our St. Louis Radiation Oncologist and our Omaha Radiation Oncologist were medical residents together for 4 or 5 years in Chicago. Amazing. Then Dr. Zhen left the room for about 10 minutes to talk with Dr. Thorstad.

When he returned to talk with us he made it a point to clarify that what we were suggesting (treatment plan using 60 grey) was non-conventional. He followed with saying they can sometimes respect the patient's request as long as it is not too unreasonable and that there is an understanding between patient and doctor. He reminded us that radiation is a one-time shot* and that the worst complication of any treatment would be recurrence of the cancer. (*Radiation is not as effective on areas that have scarring or have already been radiated.) He took us to a chart of guidelines of the National Comprehensive Cancer Network , of which Washington University and University of Nebraska were both founding members. He showed us all the data for both radiation as a primary treatment - and surgery as a primary treatment. I realize now that he probably did this to show that there is no data yet for a less aggressive approach. He talked about how maybe in ten years there would be data supporting what we want to do. Believe me, we do understand this as we understand that Dr. Haughey's work is very progressive and cutting edge. The "older data" does not accurately reflect the new strain of Mike's P16+ cancer which has unique behaviors which are actually more favorable.

He made many comments indicating that he believes that radiation is the most desirable treatment for cancer of the oropharynx. He wished that Dr. Haughey would have taken another CT scan prior to the second surgery. He talked about how in our decision we have to balance "curing the cancer" with "quality of life". He spent a considerable amount of time expressing that he believes we would benefit from chemotherapy following the radiation. Said another way "no chemotherapy is not what they would recommend". He said that it is ideal to have all of your treatment done in one place, and that for our peace of mind maybe we should go back to St. Louis for our treatment. But we also heard him say that they would work with us.

Because it was emotionally overwhelming, and partly because it was hard to discern every single word with Dr. Zhen's accent - I think that Mike and I might have heard different things. I still am not sure if Dr. Zhen said that he would be comfortable with 60 grey, or if he said 66 grey was the lowest he would go at the lymph node site. (I plan to talk with Dr. Lydiatt on Monday after the tumor board meets.) The other thing that swept me off in an emotional flood was when Dr. Zhen talked about the radiation going in at multiple angles that would hit the primary site, the back of Mike's teeth, go through his spinal cord etc. I had a misinformed ignorance that the "rays" would be hyper-focused on the lymph nodes in the left neck. (Remember my analogy back in February about the waves knocking you down? It took me a little while to get back up on my feet after Friday.)

I was blessed beyond words to get a phone call back from Dr. Thorstad himself late Friday afternoon about 2 minutes after I left a message with his nurse at his office. He spent 18 minutes talking to me, calming me and answering my questions. He made sure I knew that he and Dr. Zhen knew each other from medical school. He told me that he shared with Dr. Zhen that he has dropped to 60 grey even when the tumor has broken through the capsule when related to the p16 virus. We talked about how we are both comfortable with the decision to skip chemotherapy because the trials sited do not account for p16. I shared my concern about the radiation "spread" to other areas of Mike's mouth. He said it was important to remember that they wouldn't be "targeting" the tongue, primary site or teeth so the dosages they received would be less. He said that this newer multiple-angle-radiation is a superior treatment, but it does spread to a wider area at lower dosages.

Dr. Thorstad words were so clarifying and comforting... like he was helping me stand back up on my feet after being wiped out. He said that every radiation oncologist sets up his treatments very individually - with a plan to kill the cancer, but minimize the amount of tissue hit. He thought that Dr. Zhen would be comfortable just treating the neck as he & Dr. Haughey recommended. He shared comforting words how some radiation following the surgery Mike already had can clear this up. He reminded me that Dr. Haughey has been doing this for 10 years with great results... but said there is only one Dr. Haughey... and in about 10 more years the course of treatment we are seeking with be the standard for p16+ because of what Dr. H is pioneering.

So for at least a couple days, please do not ask the following questions:

1. When are you moving into the new house?

2. Where are you getting Mike's radiation treatments?

Because the answer to both right now is "we don't know".

back to UNMC.

Today at 2pm Mike and I got to meet with Dr. Bill Lydiatt again at the University of Nebraska Medical Center. We established a relationship with him and his kind nurses back in February when we first received our cancer diagnosis. That is such a scary time and they helped us through those initial hours and days - and it felt good to see them again. They were pleased with how well our treatment plan has gone - and how good Mike looks.

As a reminder, Dr. Lydiatt and his brother started the Head & Neck Cancer Center at UNMC. He also knows Dr. Haughey and has cited him in his research. He could also win a prize in bedside manner, which is handy for a cancer doctor. Our meeting with Dr. Lydiatt was STEP ONE in the process. On Friday morning at 9am we will meet with the Radiation Oncologist at UNMC, Dr. Zhen.

Today Dr. Lydiatt said that "he would agree with the decision for radiation" at this point. He reviewed Mike's medical records, his surgical history and the radiation treatment plan recommendation of Dr. Haughey and Dr. Thorstad. He said that he could not tell us yet whether UNMC would honor the treatment plan because the decision will be up to Dr. Zhen. He said he will personally talk with Dr. Zhen and also bring Mike's case before the Tumor Board on Monday. (Is that not the worst name for a board that you would ever want to serve on??)

Dr. Lydiatt explained that the issues would be:

1. With extracapsular spread, they will say that chemotherapy following radiation will give you an incremental advantage. (Skilled researchers fall on both sides of this one.) He also said that patients can deny the treatment and will not be kicked out over it.

2. The other issue is whether Dr. Zhen will be comfortable doing limited radiation.

After talking with Dr. Lydiatt and his staff I would guess that there is a chance that they would treat us here. I am just guessing at this point though. The great part is that we already have a great medical facility (in St. Louis) that will deliver a treatment plan we are comfortable with and confident in - and we might have another one that is even more convenient (in Omaha). Dr. Lydiatt said that they would request the pathology slides and review them before they made their decision. He also said that sometimes decisions can be reached if it has equipoise (one of my favorite words). In the medical ethics it means that there is a state of uncertainty regarding the pros and cons of either therapeutic arm in a clinical trial.

We will find out soon enough. Please pray for a clear path, and for complete eradication of the cancer from Mike's body with no long term side affects (or short ones for that matter.)

scary as hell.

This is a quote from Mike as we were leaving the Siteman Cancer Center today. Sorry for the language, but today was rough. Like I said we started with a visit to Dr. Haughey where he shared the surgery specifics and pathology: 2 of 6 nodes were affected and lymphovascular invasion was identified. The invasion of the cancer outside of the contained walls of the lymph nodes gives us the marching orders for some radiation.

The operative word there in my opinion is some. Because we have had the surgical procedure to remove the bulk of the cancer mass, it limits (or should limit) the amount of radiation that Mike will need to mop up this remaining bit of cancer. Dr. Haughey said he wants us to pursue radiation at this point but believes it is only necessary on the left neck at an adjuvant dosage with no radiation to the primary site or right neck.

So it was on to the Radiation Department. Here is where scary and overwhelming came into play, starting with the people sitting in the waiting room. We will spare you details. (Our apologies to Tom Vespa who got more details than he was hoping for when we tumbled in from the hospital today.) We are too tired to say too much but basically we got an introduction course in Radiation 101 and we understand in spades why this is what we have tried to avoid. It confirmed why we pursued a surgical treatment path. It confirmed why we are thankful that Dr. Haughey's research thinks outside of the cancer-community-box. It confirmed why we will continue to approach radiation treatment with caution. It confirmed why we need to continue in prayer for healing and guidance.

It started (like it always does) with an intern coming in to talk with us first. He explained what a "standard procedure" would look like: Six and a half weeks of radiation treatment 5 days a week at the back of the mouth and on both sides of the neck, followed by chemotherapy. Then he showed us a power point presentation on what to expect from a radiation treatment, how they make the "masks" to hold you still during the treatment (very scary), and many slides & photos on side effects. (I will save specifics for another time.)

Then Dr. Thorstad came in. He works closely with Dr. Haughey and we were interested to hear that they converse several times per week. Dr. Thorstad said "I think you would benefit from radiation treatment" and explained what specific treatment plan he would recommend which lined up with what Dr. H said. In a nutshell: 60 GREY TO LEFT SIDE NECK. NONE TO PRIMARY SITE. NONE TO OTHER SIDE OF NECK. He would treat the exact regions where the affected lymph nodes were located and then use a lower dosage about 1-1 1/2 centimeters above and below.

FYI: A "full" dose is 70 GREY. An adjuvant or "helper" dose is 60 GREY. The "lower" dose for the surrounding area is 52 GREY. It was interesting to hear that Dr. Thorstad used to use 66 GREY for adjuvant, but his research of the past 1 1/2 years shows that 60 GREY is just as effective.

Both Dr. Haughey and Dr. Thorstad explained that chemotherapy in the case of Mike's kind of P16 positive cancer does not increase the effectiveness of the radiation for the toxicity risk to the body. We learned that the horrible slides we saw were side effects of radiation on both sides of the neck so we were a bit relieved about that. We also learned that some people are more tolerant of radiation than others on a molecular level, and they really do know not why.

Our next step is to see if we can have our radiation treatments in Omaha at UNMC. More specifically, we need to see if UNMC would agree to respect and carry out this particular treatment plan. We are going to give Dr. Thorstad and his staff a few days to write up Mike's case and treatment, and will call Dr. Lydiatt at UNMC on Monday.

For the next few days we are taking a vacation from cancer. Mike is going to enjoy going to work and continuing his insulation job at the new house. I am headed to Minneapolis for Creative Memories national convention aka SHOWCASE. We both need a cancer break. Sorry this is long. If nobody ever read a word of this blog, I do believe I would have to do it for ourselves for our sanity. Even though we are exhausted after today it was meaningful to try to make sense of a hard day and four pages of messy notes. Somehow it clears my head to blog about it. And it is tremendously comforting to know that loving friends are caring... and prayers are going up.