Thursday, March 31, 2011

hope & blessing in dark places.

We thought that these photos of Tom's March garden in St. Louis were a good picture of how our lives are scattered with beautiful blessings in a dark place. It was so encouraging to see bulbs blooming and blossoms bursting all over St. Louis! While the garden is still mostly cold and dormant, it shows fragrant signs of beauty and hope... Blessings bursting out of dark & cold soil.
...Much like having so many of you reading our blog with tender interest and praying for us... like the wonderful cards that Mike reads more than once... like Sharon picking us up from the airport in St. Louis and staying with us during the long meet-with-the-doctor day... for having friends that live blocks from the hospital that we love so dearly that we feel at home away from home with them... for excellent insurance... for caring phone calls & emails (and for the times people just pray instead of calling or emailing)... for the myriad of offers for help with the kids... for Mike's boss who told him to "do whatever he needed to do"... for all the times that we know without a doubt that we are able to do something because people are praying...

surgery specifics.

For those of you who have requested nuts & bolts, here you go: Mike's transoral laser surgery will be on Tuesday, April 5th at 7:30am at Barnes Jewish Hospital in St. Louis. Meeting Dr. Bruce Haughey was a blessing and relief. We can both say "we would entrust our lives to him" ... and Mike gets to. Bruce has been doing this kind of surgery since 1996 and in his own words "it is what I do all day - and night". He does research on why & how the surgery route to remove Mike's kind of cancer offers the best results, and the largest edge for functional recovery. Dr. Haughey believes that a non-surgical route is the "non-thinking approach". We couldn't have said it better! Mike's surgery will last about 5 hours and will start with the removal of the primary cancer mass at the base of tongue / tonsil area. After creating a guard for Mike's teeth, Dr. Haughey will use a Steiner Scope which will be inserted down Mike's throat. Bruce actually trained under Dr. Wolfgang Steiner in Germany. It probably goes without saying but the beauty of using the scope for the laser surgery is that they do not have to cut through the outside neck skin & tissues to enter the throat area. An initial cut will be made with the laser to get by the normal layer to the cancer tissue which looks very different. Then Dr. Haughey will work to remove all the cancerous tissue until all the margins are gone. Tissue will be sent to pathology in layers until only "clean" tissue remains. Bruce will "ink" or mark the areas where tissues are removed during this process. Using and waiting for pathology results is one of the reasons why the surgery lasts so long. After the primary mass is removed, they will switch equipment and work to remove the affected lymph nodes. Our understanding is that Head & Neck cancers all have their own drainage patterns. Mike's cancer drains to the same-side lymph nodes which are the body's natural filtration system. The neck has 6 levels and Dr. Haughey will be removing nodes from levels 2,3, 4 and 5. The affected lymph node in level 5 is the one that Bruce biopsied on Tuesday. It is a bit "further south" than the others which is another reason for the 5 hour surgery. We memorized Dr. Haughey's comforting words that he is confident he can get all the cancer, it just takes longer when the affected lymph nodes are more spread out. He will be working around facial nerves and arteries which makes it very delicate work. Dr. Haughey's brilliant nurse, Nicole, said that in similar cases Dr. Haughey will normally remove about 20-30 lymph nodes. (In case you are wondering, there are over a hundred on each side of the neck.) He will be looking for any invasion of the cancer and how clean the margins are. If there is extra spread outside the capsules, they will grade this. Some good news is that with Mike's specific type of cancer, if he gets a negative margin (the tissues are free from spread), they are not seeing these tumors recur. Some not-as-good news is that Mike will be in the hospital an estimated 5 days and he will be "uncomfortable"... an understatement. He might have to have a breathing tube the first night, in which case they will keep him sedated. He should not need a trach tube or feeding tube, but if swelling is excessive both are options. He will have neck drains which Dr. Haughey will remove on our post-op appointment on April 12th. He will be learning to swallow on the days in the hospital. The side effects of numbness of his tongue and neck area should subside in 4-6 weeks. We should probably add that we are actually 'excited' about all of this because it all sounds much more hopeful than what we have learned about radiation. These are recoverable symptoms and like we said before, we trust Dr. Haughey explicitly and still stand amazed that in God's good providence we were guided to him. In the midst of all the scary and dark things, God has been so present and there have been myriads of blessings. We are humbled and amazed... even that we have so many loved ones reading this blog and thanking us for making posts. Amazing grace.

Wednesday, March 30, 2011

mike comments on the ride.

My pre-op appointment with Dr Haughey was yesterday afternoon and Karen asked me to comment on "The Ride." I guess I was expecting to shake hands with Dr Haughey and listen to him say, "Surgery is on the 5th, show up at 05:30. Any questions?" The only thing similar to my expectations was shaking hands with Dr Haughey. Karen, Sharon Mayfield (long-time St Louis friend, now mine too) and I spent the next 5 hours with Dr Haughey and his staff as they gathered more detailed information in preparation for surgery. The afternoon included a laryngoscope to view the cancer mass, ultrasound of the lymphnodes and FNA (Fine Needle Aspiration) of a lower neck lymph node. Following this we checked in with Barnes-Jewish Hospital's Center for Perioperative Assessment and Planning. Questions, blood work, more questions, nurses assessment and finally...more questions. At one point in the afternoon Karen asked me how I was feeling. The thought that first popped into my mind was "Marines, check your magazines, lock-n-load." Then I thought of the scene from Saving Private Ryan as the landing craft are ready to land and you hear the LCVP pilot say: Clear the ramp! Thirty seconds. God be with ya! There's no longer a question of what we're going to do, it's time for action. There's kind of a lump in my throat...not the cancer kind...the nervous kind. we go. Sharon dropped us off at the home of Tom and Janice Vespa where we would be staying the night. Sitting around the fireplace, we were reflecting on the day and Janice asked, "So Mike, where are you on the ride now?" In order to understand my response I have to back track and fill you in on where we got the blog title "Mike's Long Ride." Long before Morgan Freeman and Jack Nicholson had their Bucket List. I was working on mine. 1. Own a Harley 2. Drive a BMW 3. Skydive and 4. Ride my bicycle arcross the United States. I have yet to make the ride across the U.S. but I figured this cancer journey might be a comparible trip. Responding to Janice's question I said, "I left Portland and I'm at the Washington state line." Janice replied, "And next week you'll be at the Grand Canyon." a great picture of where I'm at on the ride.

Monday, March 28, 2011

the banana mystery.

When we were first having Mike's swollen lymph node checked out, we were often asked if he had any symptoms to which we would always say - None. And then almost as a joke Mike would add "except when I eat bananas, the side of my throat feels funny". As you know by now, it turns out that this is where his cancer mass is located. Our first visit to the Nebraska Medical Center was to try to locate the cancer mass that had sent the random squamous cells to his lymph node. Before Dr. Lydiatt scoped Mike's nasal passage and throat that day, Mike stated that he was betting it was on the left side of his throat / neck because of the banana thing, our only symptom. And he was right. We are kind of waiting for someone in the medical arena to shed some light on the banana symptom. So far, no one has had a clue.
But we are exceedingly grateful that there is no mystery about what treatment plan we should pursue. It is a knee-bender for us to be heading to St. Louis tomorrow for our pre-surgery appointment with Dr. Bruce Haughey at 1pm Tuesday, March 29th at Barnes Jewish Hospital. We will get to hear from Dr. Haughey's own lips why he recommends robotic laser surgery as Mike's primary treatment and what exactly his plans are for Mike. May I say it again - we are ecstatic to be working with a surgeon as capable as Dr. Haughey and actually anticipate the journey that will lead Mike down this road to healing.
Please pray for traveling mercies, for wisdom and blessing for Dr. Haughey, for a connection with Dr. Haughey and his staff, and that Mike's body would somehow be really ready for the surgery next week. We will fly back to St. Louis April 4-12th for his surgery on April 5th. More details to follow about the surgery later this week after our appointment...

Sunday, March 20, 2011

it feels like a miracle.

We are thrilled to share that Mike's surgery date is set and our plane tickets to St. Louis are purchased. We are humbled with gratitude beyond expression that Dr. Bruce Haughey will be performing the surgery to remove Mike's primary cancer mass and the affected lymph nodes using Robotic Laser surgery at Barnes Hospital on Tuesday, April 5th. Dr. Haughey is a world-renowned surgeon and research doctor on staff at the Washington University Medical Center in St. Louis, Missouri. His credentials are worthy of the most noted medical journals and I feel unworthy to even try to capture his skills & accomplishments in the space of this tiny blog. Having him work on Mike gives us more hope than we can express... As I mentioned before, his research shows that transoral microsurgery is an excellent primary treatment for oropharyngeal cancer. Dr. Haughey will remove the primary mass and lymph nodes affected and if all the margins are negative (meaning all the lymph nodes have stayed within their capsules and did not break out), it could turn out that Mike will not need radiation at all. THAT is our prayer, by the way. We will have more details after we meet with him. HERE IS OUR SCHEDULE: We will fly to St. Louis on Tuesday, March 29th for our pre-surgery consultation. This is where we will learn all the details of the surgery, what Mike's hospital stay and recovery will look like, and what will equip us to share more educated details. We will fly home the next day. We will fly back on Monday, April 4th for Mike's April 5th surgery. He will be in Barnes Hospital for about 3 days. We will "recover" with friends (who happen to live just blocks from both Washington University and Barnes Hospital) over the weekend. Then on Tuesday, April 12th we have a follow-up appointment with Dr. Haughey to have Mike's drains removed and hopefully will get the nod to head back home. Believe it or not, we are incredibly joyful about this journey because we believe that this is the best route to Mike's healing, and we believe that Dr. Haughey is the best surgeon of his kind in the entire world. Really. Please rejoice with us. And please pray for Dr. Haughey and for Mike as their lives prepare to cross.

a cheerful heart is good medicine.

There are energy-giving activities and then there are energy-zapping activities. Working on our new house is exhilarating to Mike. As his "cancer coordinator" I am watchful about his diet, his work schedule, and how much sleep he is getting. But even after a long day I am supportive of Mike putting in a couple extra hours of work at our new house because it is his "happy place". He is super jazzed when he has an entire Saturday to devote to Mike's List (which carpenter Dave leaves for him.)
We have considered this house a gift from God's Hand and we consider it a blessing because of the good medicine the distraction provides in the middle of his cancer fight.
This is sort of a private thing to share but when Mike's cancer news first hit us and we had no idea about its type, grade or severity, Mike said to me in tears that one of his fears was that the house would not get finished and we would never be able to live in it together. Renovating a house that is big enough for our whole family (and extended family) is a huge dream for us. The joy that Mike finds in working on our dream house is truly good medicine.
"A cheerful heart is good medicine while a crushed spirit dries the bones." Proverbs 17:22
(If you would like to know more about the Dream House, check out our blog at - or follow the link under My Blog List.)

Saturday, March 12, 2011

meet me in st. louis.

Yesterday we were able to talk with Dr. Bruce Haughey's nurses at Barnes Hospital in St. Louis. Even though we are still waiting for the final word from Dr. Haughey as to the exact surgery he will select for Mike, the nurses were able to tell us the dates that he is penciled in for. (Even knowing the approximate dates was a huge relief!) If Mike has Robotic Laser surgery, his surgery date will be April 5th with our initial appointment on April 1st. If Dr. Haughey uses regular Transoral Laser surgery, we are penciled in for an April 11th surgery with our initial appointment on April 8th. Please pray for Dr. Haughey's safe passage back from New Zealand, for his strength and wisdom in treating Mike, and for Mike's healing to start even now as we wait.

Wednesday, March 9, 2011

more waves.

While in Cancun, God was gracious to give me a picture of what battling cancer (or any overwhelming thing) might look like... Mike and I went out to play in the waves, and this was not like any wave-playing I had done before. These waves were serious and had to be respected. In fact the red flags were up on the beach (indicating unsafe conditions for swimming) and lifeguards were standing on the beach's edge. Since Mike was right in front of me and a lifeguard was right behind me I felt safe for the adventure. Basically the game was to stay standing. The trick was to watch the waves come in and leap up and into the wave with force and energy. You could see them coming and you had to pay attention. If you goofed off or turned around or got sloppy, you could be wiped off your feet and pummelled into the sand without warning. It was all about keeping your feet firmly planted and keeping your eyes on the right things. It was all about not getting overconfident in your ability to face the waves. As soon as I thought I was cool and strong and good at it, an undertow or mystery wave would surprise me from out of nowhere and wipe me out. In the middle of this "wave game" I heard God tell me, not is an audible voice but in a gracious voice in my heart, that this was a picture of what our cancer fight will look like. Sometimes we will feel confident and up for the adventure. Sometimes we will feel terrified and scared for our lives. The trauma of it will come in waves, but we need to keep standing firmly. We need to stay alert and watching. Keeping our feet firmly planted on what we know to be true helps us keep our bearings. Keeping our eyes on the Lord, who is bigger than the waves (and Who actually designed the gravitational pulls that created the waves) is essential to prevent drowning. I cannot tell you how many times this has helped me. Just this morning in the shower I prayed "Lord, help me stay standing." Yesterday we heard some good and promising things, mixed in with very sobering side effects that are a part of our journey. We'll blog more about those waves another day, but now we want to thank you are your caring prayers. They are what is keeping us standing.

not a snake handler.

After hearing about our various options for treatment, Mike expressed himself very eloquently and said something like "While I am not a snake handler, I am up for a minimalistic approach. I am not game for the 1-2 knockout punch then you pummel the life out of me while I'm on the ground." Translated: While we are willing to work within the parameters of the medical community, we are not in favor of the Radiation & Chemotherapy option as our first choice. Longtime friend, Gary Oliver, who is currently fighting his 7th bout with mouth cancer said to us: "You and Mike are wise to walk slowly with the radiation option, to get several options, and to ask lots of questions. Some docs are burn (radiation) docs and some are cut (surgery) docs and some are poison (chemo) docs and that's about all they can see... and then there are those who can stand back and help each patient access the best approach or combination of approaches and Bruce Haughey is one of those. He's not a one trick pony. God has sovereignly put you in great hands."


Dr. Lydiatt said "The good news is we have lots of options... And the bad news is we have lots of options." (It is good that between Mike and Dr. Lydiatt we share moments of laughter because this is weighty stuff. My chest feels tight today writing about it.) Some of our options include: RADIATION & CHEMOTHERAPY Most data in the Head & Neck field is in the radiation arena which is why you hear so much about it. This is in fact the recommendation of the Tumor Board at UNMC for Mike. It is their "gold standard" treatment because it kills the cancer and has high cure rates. But even Dr. Lydiatt admitted that he is worried (as are we!) about the long-term toxicity of this gold standard treatment. Traditionally this was a cancer of a demographic of much older smokers, chewers and folks with poor dental health. Mike represents a new demographic of young, healthy non-smokers who would be affected by the effects of radiation & chemo 10-15 years down the road when he will still be relatively young RADIATION & CETUXIMINAB Dr. Lydiatt said that he actually favors a treatment of radiation with an antibody called Cetuximinab. This particular antibody adheres to the EGFRs (epidermal growth factor receptors) and improves the effects of the radiation. SURGERY AS PRIMARY TREATMENT Mike and I have liked this option from the git-go. Even Dr. Lydiatt said that "surgery has a role to play that we are not using enough." Surgical removal reduces the cancer load and would lower the radiation dose needed. (Our desire would be to have little or no radiation but we have to balance the known effectiveness of radiation's ability to kill cancer, especially since it has already strayed to Mike's lymph nodes.) One of our favorite things to read is one of Dr. Bruce Haughey's papers entitled "Transoral Laser Microsurgery as Primary Treatment for Advanced-Stage Oropharyngeal Cancer". He basically says that this kind of surgery for Mike's kind of cancer have had successful results - but you can read it for yourself! This is the route we hope to take. Please pray for Dr. Haughey as he speaks in New Zealand on Mike's kind of cancer, for his safe trip back to the States, and for wisdom as he sets up his schedule with Mike. Transoral Laser Microsurgery as Primary Treatment for Advanced Stage Oropharyngeal Cancer: A United States Multicenter Study Haughey BH, Hinni ML, Salassa JR, Hayden RE, Grant DG, Rich JT, Milov S, Lewis JS Jr, Krishna M. Department of Otolaryngology-head and Neck Surgery Washington University School of Medicine, St. Louis, Missouri Abstract BACKGROUND: Nonsurgical modalities are sometimes advocated as the standard of care for advanced oropharyngeal tumors. Oncologic and functional results have been modest. The aim of our study was to evaluate outcomes of a minimally invasive approach, using transoral laser microsurgery (TLM) as the primary treatment for advanced oropharyngeal carcinoma. METHODS: A prospectively assembled database of 204 patients with American Joint Committee on Cancer (AJCC) stages III and IV tonsil or tongue base cancer, treated primarily with TLM during 1996-2006 at 3 centers with minimum 2-year follow-up were analyzed. Survival, locoregional control, and swallowing status were recorded. RESULTS: Mean follow-up was 49 months and 79.4% of patients were alive. Three-year overall survival, disease-specific survival, and disease-free survival were 86%, 88% and 82% respectively. Local control was 97%, and 87% of patients had normal swallowing or episodic dysphagia. CONCLUSIONS: TLM as a primary treatment for advanced oropharyngeal malignancy confers excellent survival and swallowing proficiency.

p16 positive.

The biopsy confirmed that Mike is p16 positive which we were hoping for. Like Dr. Lydiatt said "It is our trump card." Patients who test p16 positive (which is a cell cycle regulatory protein) respond better to therapy and have improved outcomes.

Monday, March 7, 2011

the salivary glands.

I think it is safe to say that sometimes you don't appreciate what you have until you lose it. I think it is safe to say that Mike and I have been taking our salivary glands for granted for some time now. In our treatment plan research we have been learning some of the side effects of radiation therapy, including loss of salivary glands. If you asked me last week about the role of salivary glands, I might have mustered an answer relating to my ability to spit which I have never considered significant... until now. Did you know that your salivary glands help you eat and ingest the food you love and actually start the digestive process? That without them you have to drink lots of fluids to get your food down? Did you know they aid in your ability to talk? And make kissing more fun? Did you know that the salivary glands are responsible for your dental health and help prevent decay? The salivary glands are what keep your mouth a healthy, happy place that you don't have to think about very much. We covet your prayers for a progressive treatment plan that kills the cancer, but limits to side effects to Mike's head, neck and mouth. We would like to keep as many salivary glands as possisble for one thing. We think we are on the right track, and we are excited to meet with our oncologist, Dr. Bill Lydiatt on Tuesday, March 8th at 2pm. (We are planning to take the 4-wheel drive pickup just in case we get all the snow they are anticipating.) We are also in the process of scheduling appointments with Dr. Bruce Haughey in St. Louis. In the meantime, be thankful for your salivary glands.

Friday, March 4, 2011

answered prayer. big answered prayer.

We are thrilled, elated and humbled to have heard back from Dr. Bruce Haughey in St. Louis already today. We feel blessed that he is willing to see us, review Mike's case and possibly perform the robotic surgery to remove the cancer. We meet with Dr. Lydiatt again on Tuesday, March 8th and will be coordinating with Dr. Haughey's staff as well. This is the email that brought tears to our eyes... and a happy dance to our feet: Hello Karen Sorry to hear about this, but I would be very happy to see Mike. However it will have to wait until I'm back in St. Louis. Ironically I'm in the southern hemisphere giving talks on just what he has.Yes we have established and published a protocol for his problem/stage of disease, which I can explain if you come. We've recently published another, broader multi center study which validated the results in the paper that Bill was probably referring to. I shall be able to see Mike after 3/14 when I return, and Ill cc my nurses with this so they can get in touch and arrange an appointment. With folks from out of town we often have an appointment, followed a couple of days later with an OR session for the surgery. If you would please send your husband's scan discs ahead to my office in st Louis as well...they will take it from here. Best, Bruce We are overwhelmed with hope and the grace of so many pieces fitting together. We are sharing this because this is the stuff that your prayers are effecting. We are overcome by the goodness of the Lord through the prayers of loved ones. Wow... Thank you for journeying with us.

Thursday, March 3, 2011

everything confirmed. nothing more.

These were the good words that Dr. Lydiatt shared after Mike's biopsy this morning. The mass was confirmed as squamous cell carcinoma, and the lab will have more detailed information for us in about three days. For those of you who like real medical terms, here you are: T-1 / N-2B / M-0 / Stage 4A Dr. Lydiatt did not remove the affected lymph nodes at this time, so Mike's procedure was short and he was sobered up from his anesthesia in time to be out of the hospital before noon. His throat is very sore from the procedure making drinking, eating and talking uncomfortable. He said "this is probably a taste of things to come". Pun intended. I learned that an accurate way to describe Mike's kind of cancer is Oropharyngeal Squamous Cell Carcinoma. (It is the same kind as Michael Douglas, by the way.) It is actually more a "tonsil cancer" than "tongue cancer" because it is so far back down Mike's neck that the tissues are lymphoid or tonsil tissues even though it is technically still on the tongue. The best part of the day was getting to spend 45 unrushed minutes with Dr. Lydiatt talking about potential treatment options. We have our next appointment with him next Tuesday, March 8th to talk in more detail and define our treatment plan. Note: Prayers for wisdom and God's will are very important here. Period. We can't thank you enough for helping guide our journey in this way with your prayers. We are interested in seeking a second opinion both to confirm whatever treatment we move into, and because we think it is the wise thing to do. When asked if there is a cancer center that specializes in OSCC (Oropharyngeal Squamous Cell Carcinoma) we learned that the University of Nebraska Medical Center sees more patients than the Mayo Clinic, probably because of the Head & Neck Cancer Division that Dr. Bill Lydiatt started with his brother Dr. Dan Lydiatt. But the premiere centers for OSCC are probably Sloan-Kettering in NYC and MD Anderson in Houston. We are interested in the option of robotic surgery as a first step to hopefully limit the extent of radiation needed. (We still have much research to do so I don't mean to sound like we understand all the ins-and-outs of all the treatment options.) But while we know that radiation kills cancer cells, we don't want to be ignorant about the long-term side effects of radiation since Mike is still a very young man in our opinion. We don't want to say too much or put the cart before the horse but it was encouraging to be reminded on my trip to St. Louis last week that a doctor friend from our church home in St. Louis is one of the leading robotic head & neck surgeons in the country. All of these "puzzle pieces" are tremendously comforting at a confusing time such as this. Dr. Lydiatt about fell out of his chair when I mentioned Dr. Bruce Haughey's name because he is so renowned in the field. Dr. Lydiatt said that he had just written a research paper where he sited Bruce's work. It is comforting when the world seems small & friendly at times like this. God works in mysterious ways.

Wednesday, March 2, 2011

the PET scan.

Our first appointment with our oncologist, Dr. Bill Lydiatt, was on Tuesday, February 22, 2011. Dr. Lydiatt then scheduled a PET scan for Mike at the Med Center on Thursday, February 24. The purpose of the PET scan is to locate / confirm the primary source and to see if the cancer has spread to other parts of the body. We were delighted to get a call on the following day to report that the cancer had not invaded Mike's bones or other organs. The scan did confirm the primary site as base of tongue, and did indicate that cancer cells were in more than the original lymph node. We were fascinated to learn how a PET scan works. Mike was instructed to limit his sugar intake and strenuous physical activity for 12 hours before the scan. On the day of the scan they inject a concentrated sugar serum into Mike's system with some radioactive stuff. The book Dr. Lydiatt wrote says "In PET scans, the agent shows cellular activity, especially areas of increased metabolism. Cancer cells, which thrive on sugar, show up as bright areas on the scan." In our own words, the cancer gets so happy when the sugar shows up that the increased metabolism shows up and reveals the spots where cancer lives! Oh my. If we had thoughts about reducing our sugar intake before, this was an eye-opening reminder that it is a good idea. Our next step in the journey: Mike goes under anesthesia on Friday, March 3rd for a biopsy of the mass with the possible removal of the affected lymph nodes. The medical description of the surgery is "direct laryngoscopy with biopsy / left neck lymph node biopsy with possible neck dissection". We covet your prayers. Specifically for wisdom and skill for Dr. Lydiatt, for complete healing without long term side effects, and for wisdom for the most progressive treatment plan. Also that we could keep the joy in our journey, and not get overwhelmed by the "giants in the land". God is bigger than any giant. Thank you for praying!

the joyful shirt.

This is a photo of Mike in his happy shirt. It is the shirt that he purposefully wore on our first visit to the Head & Neck Cancer Center at the Med Center. He told Dr. Lydiatt and the clinical team that he wore his "joyful shirt" because the bible says in James chapter 1 to "consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance"... and he is seeking to consider this a joy.

meeting the oncologist.

We liked and trusted our oncologist, Dr. Bill Lydiatt, within minutes of meeting him. He and his brother started the Head & Neck Cancer Center at the University of Nebraska Medical Center. It was easy to have confidence in him because you could tell that he deals with this very kind of cancer day in and day out, and his bedside manner is happy and straight-forward.
We got to read the pathology report from the lymph node biopsy:
Dr. Lydiatt felt around Mike's neck (lymph nodes) and did a careful inspection of his mouth and tongue before doing a scope. Within minutes of inserting the tiny video camera into Mike's nose and throat, he located what he believed was the primary source at the base of Mike's tongue (which was confirmed by a PET scan two days later.)
I got to be in the room for the scope and was amazed that such a small and insignificant-looking bean-sized mass was the culprit we were looking for. I was flooded with thankfulness that we had located it before it got any worse. The room did spin around when Dr. Lydiatt explained that it was sized at T1 (relatively small) but would be Stage 4 since it was already in one and probably in 2-3 lymph nodes. He tried to explain that staging is different in Head & Neck Cancers, but it was hard to hear anything else when you were emotionally flooded. At this stage of knowing what we know, he gave Mike an 85% chance of being cancer-free in 5 years.
I added the little arrows to the scope photo so that you could locate what the doctor believes is the cancer mass that filtered the squamous cells into Mike's lymph nodes.
May I take a moment to thank everyone for the prayers they have prayed for Mike & I on this journey. We need them. We feel them. The reason we started this blog was so that we could take you on this journey with us... one step at a time... one day at a time...

Tuesday, March 1, 2011

pit stop in dallas.

Since we were flying with FF points, we had the flexibility to change our flight time to enable us to make an appointment with Karen's dermatologist in Dallas on our layover en route home. Since we had learned that squamous cell is a skin & tissue cancer we thought it would be another piece of the puzzle to have Mike checked out by a trusted, big-city dermatologist. Dr. Hino checked Mike's exterior surfaces with a fine-toothed comb (actually a magnifying glass and bright light) and gave him a clean bill of health. Now we knew it must be inside somewhere. But I still hoped it was all a big mistake and there really were no cancer cells running loose in Mike's body.


It did not take us long to consider the timing of the already planned Cancun trip as a Divine gift from God's Hand to us. During the first 48 hours of receiving the news that you have cancer, you assume that you are dying very soon and can only think of your friends with cancer who have died.
Cancun was a time to step back, take deep breaths, remember that God is bigger than any giants in the land, and remember that many, many, many people we know and love are cancer survivors. The trip was Leadership Training for Karen's Creative Memories business so we got be with CM friends we love & respect, while having lots of time to ourselves as well. Sun therapy is real. At one point I thought to myself "I am intoxicated" but I had not had a single poolside drink. The sheer delight of the sun's warming rays were both relaxing and rejuvenating. Mostly, we sat in the sun and read. Mike read Hydroponic Radiant Heating (for designing the heating system in the new house!) and George W. Bush's Decision Points. Karen read Ree Drummond's Pioneer Woman - Black Heels to Tractor Wheels: A Love Story.
We arrived home refreshed and ready to fight the cancer.

get an excellent dentist.

The reason Mike had his lymph node biopsied was because our dentist, Dr. Emily McCarthy and Shelly, our hygienist at Fremont Dental Group said to Mike more than once "you should get this checked out." In late January after asking "did you get that checked out?" they went so far as to refer Mike to the Ear Nose & Throat doctor across the street. Mike went in for a CT scan and scope on January 28th and had the lymph node biopsied on February 1st. In fact, on February 1st there was a raging white-out blizzard in eastern Nebraska. I was shocked that Mike was planning to keep his appointment and commented that he could die in a blizzard on the way to the doctor's office. But there was no stopping him. Somehow, in his soul, he knew he needed to get this done. The bottom line: Go to the dentist regularly and make sure you have a good one.

the news.

It was Friday afternoon on February 4th and we were heading south on Highway 77 in Mike's pickup when the call came in. Dr. Kuo had the results of Mike's lymph node biopsy. "It is not good news. They found squamous cell cancer..." The only word we really heard was cancer and then the world slowed down and became surreal. We looked at each other. The moment is sealed in my mind... even the way the afternoon sun was coming into the pickup. Your mind felt so jumbled it was hard to understand anything he was saying. You just kept hearing "It's not good... and CANCER..." and then things got fuzzy again.
To keep things light hearted Mike told the doctor we were leaving for a vacation to Cancun in 48 hours and "should he get his last will and testament together?" The doc replied with the steady "I think I'll have to refer you to my colleague (oncologist) for that." It seemed sobering that he could not just say "Oh, don't worry... you'll survive this... it doesn't look too bad..." You wanted to hear "there are some kind of CANCERS that are not bad to have, and that is what you have." But what he said was that there were squamous cancer cells in Mike's lymph node and that this kind of cancer would not have originated there. There was a mass somewhere in Mike's body that had already filtered cancer cells into the lymph node, and we did not know where it was.
That is all we knew. We had never heard the word squamous before. We didn't know if the primary source was on the outside or the inside. We didn't know what to look for. We didn't know if people survived. We just knew that the report "wasn't good" and there was "CANCER". We also knew that Mike had no symptoms whatsoever that were alarming. In fact the only thing he could think of was that his throat felt funny when he ate bananas. It seemed like such a tiny thing that we almost said it in jest. (But later found out that he was on to something.)
We spent the next few hours calling our mothers, and all ten children. It was a bittersweet but precious time. It was terrifying and traumatizing... and it was also comforting to remember that the God we love and serve is beautifully Sovereign over ever molecule in the Universe. If we can see Him working in our daily lives in the sweet and good things, we can see Him in the dark blessings too.
After consulting with family, friends and doctors we decided to keep our trip plans and head off to Cancun as planned. We couldn't even talk to or schedule an appointment with the oncologist because it was too late on a Friday afternoon. We packed our bags in a fog.