Sunday, August 28, 2011

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".

Tuesday, August 23, 2011

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.)

Tuesday, August 16, 2011

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.

just saw dr. haughey.

We started today with an appointment with Dr. Bruce Haughey. He told us that two of the six lymph nodes that he removed contained cancer cells, which we were expecting to hear. He also said that the pathology report showed lymphovascular invasion which means that the cells were found in the lymph node channels, as well as in the lymph nodes themselves. This is why Dr. Haughey is recommending low-dosage radiation to this area (left neck). He said that this area works well with radiation.

We are currently waiting to see Dr. Thorstad, the radiation oncologist who works with Dr. Haughey. Note: It is sobering and scary in the radiation department of the hospital.

just what the doctor ordered.

We are just finishing a relaxing week in St. Louis after last Wednesday's surgery which included Cardinals baseball, lots of reading, sleeping in and delightful meals shared with great friends. What a gift... If we would have been in close proximity to work or the new house, Mike would be working. It has been the perfect medicine to be 500 miles away for Mike to have the opportunity to lay low and heal.

Friday, August 12, 2011

good medicine.

Providential. Daughter Emily sent Mike the book "Unbroken" for his birthday last month. I have never seen Mike more captivated by a book and it is the perfect medicine for him right now. He spent hours yesterday sitting on the third floor sofa reading his book. He went to bed reading it last night. He woke up this morning and finished it. I could not have been happier. One of my most difficult jobs as Cancer Coordinator is keeping Mike from lifting and working and breaking the 10 pound rule. It is hard to keep him down. This book was a God-send.

He just came down and reported that he finished the book - and to his delight a Marine buddy was listed in the credits at the end. Author Laura Hillenbrand said "I also thank my dear friend Colonel Michael C. Howard, USMC (Ret.), who worked with... (others)... to find information on Everett Almond, the navigator who was killed by the shark while trying to save himself and his pilot." Mike loved this book.

Side note about great books: We saw the movie "The Help" yesterday afternoon with friends Sharon & Randy Mayfield. (CC has determined that movies are a great recovery & healing of stitches activity.) The book is great AND the movie is great. That is rare. Hope you will both read the book AND see the movie if you haven't.

God things.

Ever wonder how we fly back and forth to St. Louis like this? Answer: Southwest. 45 minutes in the air. Non-stop. No baggage fees. Usually we make our next flight arrangements before we even leave St. Louis which enables us to use the WANNA GET AWAY fares. These are the best deals but have to be scheduled 14-21 days out.

Yet another God thing was securing flights for this surgery trip without losing our shirts with less than a week's notice. I called Southwest and asked if I had enough Rapid Rewards points for this flight. To my amazement she said "You actually have a ticket and a half from the old system and it expires on September 12, 2011." (Mouth dropped open.) Without this surgery I would never have known or suspected that I had a free plane ticket ready to expire. It would have vanished into thin air without me knowing it. So we flew on the rewards from the old system + 9000 points from the new Rapid Rewards system. Total cost of tickets: $5 each.

'The Lord's mercies indeed never cease and His compassions never fail." Lamentations 3

count 'em.

These are actually Mike's first stitches. After his first surgery he had these knarly-cool quarter inch staples holding his neck together. I thought "wow, what a wicked cool scar..." and then by the time we landed back in Nebraska you could barely see it even 10 days out of surgery.

I have decided to post the stitches photo (I tried to make it small) because by the time you see him his scar will be invisible again. The drain comes out today and the stitches on Tuesday (Lord willing.)

When Dr. Haughey said that this would be a simpler procedure, after the last surgery we could not conceptualize how non-painful it could be. On every level we were pleasantly surprised - no hospital stay, no swallowing issues, no sleeping issues. He has not taken any pain pills. (He only took two Alleve after the surgery for what I believe could have been a caffeine headache.)

We have an appointment with the radiologist who works with Dr. Haughey on Tuesday and Mike's stitches are scheduled to come out on Wednesday. We just changed our flights to stay through the weekend because basically it would cost $700 to come home today and fly back early next week. (More on that later.)

Just know that the patient is doing great! By the way, there are 20 stitches.

Wednesday, August 10, 2011

fast progress.

We took this pic this morning while we were waiting for our spot on the surgery schedule. Mike was wheeled into the surgery room just before 11am.
Dr. Haughey came out to report that everything went great about 12:30pm. Like the previous post reported, the node(s) were successfully removed and Dr. H was able to take a good look at the primary site while Mike was on anesthesia and find that it looks "perfectly clear". By 2pm I was able to go back and sit with Mike as he came off the anesthesia. By 2:30pm he was dressed and eating the cookies I had packed for him - Oatmeal Scotchies. By 3pm Tom Vespa was shuttling us home from the hospital!
By 4pm Mike was on the porch with Tom drinking coffee and snacking on Janice's peach scones. We are elated with this quick recovery. He does not like how the anesthesia feels, but it is wearing off a bit more by the hour. This truly was a MUCH simpler surgery.

Dr. Haughey said that the nodes were entangled in some sensory nerves that he had to work around (so Mike might have a numb spot for a while) but the motor nerve was not in the area (so Mike possibly might not have any severe setbacks with his physical therapy.)

Such a remarkable day - with so much to be thankful for!

out of surgery - everything good.

Dr. Haughey just came out to tell me that everything went great. He removed the enlarged lymph node and a few surrounding ones. He said it went very well. He said he put in a drain that he will remove on Friday. We do not have to spend the night at the hospital - yeah! He will let us know when we get the results of the pathology report which will dictate what we do next.

He was very pleased to tell me how absolutely clean the primary site (at tonsil area) was and even showed me four photos of the area. All showed different angles of the site and all looked like healthy & perfect baby skin. That was pretty thrilling! While surgery is a bummer it did provide a great opportunity to get a picture (literally) of the primary site at close range.

My heart is doing a happy-dance rejoicing thing. Mike is coming off of his anesthesia and I will get to see him soon.

mike just went into surgery.

It is almost 11am on Wednesday, August 10th and they just wheeled Mike into his surgery. We both felt a bit nervous this morning as we waited at the surgery center, but after Dr. Haughey came on the scene it is like you can breath again. He explained again that this is a fairly simple procedure today. He will get the bad nodes out and then just take a look at the main site with the Steiner Scope while Mike is on anesthesia. He said he is confident that the area is perfectly clean, but it is an ideal opportunity to take a look.

We told Dr. Haughey that many were praying for him.

I will update when I know something.

Monday, August 8, 2011

a bit more surgery.

Dear friends & family riding with us... thanks for your love and support. We are feeling it!

We head to St. Louis on Tuesday afternoon for our surgery on Wednesday, August 10th at 10am. I can tell that Mike is a little blue about it, but he is still the strongest, cheeriest cancer fighter I know.

This is not a recurrence of the disease but likely a microscopic bit of disease left from the neck dissection. We know that the cancer was removed completely from the throat area with the last surgery, but the lymph nodes are trickier. The previous surgery was two part: removal of cancer mass in tonsil area and neck dissection for cancer cells that had migrated to the lymph nodes. Mike had cancer cells in 4 of the 33 lymph nodes removed. We will know more when Dr. Haughey gets back in there but he will for sure be removing the enlarged node and possibly some surrounding ones.

We will also meet with the radiologist that works with Dr. Haughey after the surgery on Thursday. After the pathology reports are back they will make a recommendation for a radiation treatment to Mike's left neck only to mop up any disease that might be left. We will post more when we know more.

We continue to be thankful that we can limit the dosage and placement of the radiation because of the surgical options we have had. When you have spent time at Head & Neck Cancer clinics you know first hand how disfiguring and debilitating head & neck radiation can be... We heard of a man this week who had throat cancer and hasn't eaten for 12 years. (The radiation destroyed his ability to do so.) ...And on our first visit to UNMC we met a wonderful fellow and after talking a bit Mike asked about his "accident". We guessed that he had taken a grenade to the face serving in Afghanistan. Actually what we saw were the effects of radiation from sinus cancer. It is uncomfortable to tell the morbid stories but it is the realities that come with head & neck cancer & radiation. We are thankful for the minimal amount of radiation we will need because of our surgical path.

Mike has been on the prayer list at our church this whole time and two weeks ago a good friend said in good nature "Why are we still praying for you - you look great." Steve was one of the first people we called when we got out of Dr. H's office last week. Thanks to all of you for hanging in there with your love and your prayers!

Wednesday, August 3, 2011

the ride continues.

We just heard back from Dr. Haughey's nurse and we have surgery scheduled for next Wednesday, August 10th. We are to arrive at the Center for Advanced Medicine at 8am for the 10am procedure. This is the building that Dr. Haughey's office is in and we snapped this photo yesterday. While we were ready to rally if a surgery space opened up this week, it also feels kind of good to be heading back home tonight to get our bearings for "the ride" next week.

This is all a bit numbing. Mike said that in reference to MikesLongRide, he felt like he was nearing the end of his ride on the east coast and they turned him around and said you have to go back a bit. (For those who have been blogging along the journey with us, MikesLongRide is his analogy of the cancer journey being like the challenge of his bucket list goal of riding his bike across the US.) Friend Janice Vespa suggested this morning that maybe we should view this as just stopping for a tune up! We like that.

When you start a long journey like this with cancer, you really do not know where the ride will take you... but we do like knowing the One who is sovereign over the Ride and rest in the fact that He is holding on to us.

Words that comfort today:

1 O LORD, You have searched me and known me. 2 You know when I sit down and when I rise up; You understand my thought from afar. 3 You scrutinize my path and my lying down, And are intimately acquainted with all my ways. 4 Even before there is a word on my tongue, Behold, O LORD, You know it all. 5 You have enclosed me behind and before, And laid Your hand upon me. 6 Such knowledge is too wonderful for me; It is too high, I cannot attain to it. 7 Where can I go from Your Spirit? Or where can I flee from Your presence? 8 If I ascend to heaven, You are there; If I make my bed in Sheol, behold, You are there. 9 If I take the wings of the dawn, If I dwell in the remotest part of the sea, 10 Even there Your hand will lead me, And Your right hand will lay hold of me. 11 If I say, “Surely the darkness will overwhelm me, And the light around me will be night,” 12 Even the darkness is not dark to You, And the night is as bright as the day. Darkness and light are alike to You. 13 For You formed my inward parts; You wove me in my mother’s womb. 14 I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. 15 My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; 16 Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them. Psalm 139: 1-16

Tuesday, August 2, 2011

today .

Mike and I flew to St. Louis today for our second post-surgery check-up. We were eager. Several days ago Mike noticed a bump on his neck close to his incision. He told me on Sunday. When Dr. Haughey entered the room, after greeting us we were eager for him to examine the bump with his knowledgeable fingers. He reported the size and position of the "ovoid mass" and "BB module" to his nurse Nicole. After doing a scope down his throat (routine at these check-ups) he said that "yes we need to get that out". He started explaining the surgery that we need to do to take care of this. This might be hard to understand but we trust Dr. Haughey so deeply that these very hard words were at the same time comforting because he was helping us take care of this. We talked about how this surgery would not be as invasive... how it would be a much more simple maybe 3 hour procedure... maybe 1 night in the hospital... that we knew there was some lymphs affected further out... that he would open just the upper end of the incision to reach and remove the affected node(s)... that his recovery would be much faster... and that he would recommend following up with a helper-dose (mild dose) of radiation on the left neck only after the surgery. At the end of the day I am so tired that I am not sure I am making sense but I wanted to say something so that we could ask for your prayers. Dr. Haughey's nurse Nicole will call us in the morning to let us know when Bruce has a window in his schedule to do the procedure - maybe even this week while we are here. We won't know until tomorrow, but after we have processed the news we decided "let's get this done as soon as we can."

On the plane today I had brought my calendar and had finally taken the time to fill in the events that we have on our calendar over the next two months and we reviewed them together. Feeling proud and satisfied I think I even said "It sure feels good to get this stuff written down to see what we are doing.." After hearing that another surgery was in front of us and we were pondering the reality of it, one of my favorite verses from James swirled through my head: 13Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.” James 4:13-15

Good lesson. We are going to bed tonight thankful that we have the care of a great doctor... thankful for the goodness of a sovereign God we trust our lives with...and thankful for great friends to pray for us as we continue the journey.

Monday, August 1, 2011

heading to st. louis.

We have our second post-surgery appointment with Dr. Bruce Haughey on Tuesday, August 2nd. We very much look forward to these appointments as Dr. H is only one who can tell us how Mike is really doing. At our last appointment on May 17th we were given instructions to "watch for throat pain, ear pain, lump in the neck or anything that seemed different".

A couple days ago Mike did find a lump close to the incision on his neck. When he told me yesterday, I almost passed out at hearing the words, and then got my bearings and decided that I would wait to hear what Dr. Haughey had to say before I got sad or scared. We are hoping it is scar tissue that has nothing whatsoever to do with cancer.

Please pray for traveling mercies and for wisdom & guidance for Dr. Haughey. Thank you...