A Boy and His Hero

As I was helping Klaus get ready one morning I asked him if he knew his full name.  He responded enthusiastically, "My name is Mini-Matt!"

Klaus is a lot like his Dad.  He must have remembered me calling him that some time ago.  He loves his Daddy.  He always has.  Klaus is a sensitive boy.  He loves me too.  In fact, he wants to marry me.  But there is a really special bond between Klaus and his Dad.  The way Matt's parents described Matt as a child, it reminds me a lot of the way Klaus behaves.  He is super cuddly and snuggly.  He still climbs into bed with us at night!  It gets awful crowded sometimes!

Klaus is also a special challenge.  He does things his own way.  He is not interested in playing with toys the way the other kids are.  He requires a lot of attention and affection.  I have been exasperated by him at some point every day for the last few years!!

And over the last two months since the big C diagnosis, Klaus has become more and more difficult to deal with.  He whines constantly and acts younger than his age.  He wakes up grumpy, acts lazy, and spends a significant portion of his day unhappy about something or another.  He gets sent to his bed a lot for making grumping sounds (which I can't stand) and yelling at us instead of talking politely.

Earlier this month during a rare moment of quiet and peace in the living room (the older kids were playing in their own rooms), Klaus curled up and snuggled in his Daddy's lap.  As I nursed Maggie in the rocking chair, I was able to listen to their heartfelt conversation.  I can't remember the exact words but it was something like this:

Klaus, quietly: "I'm worried."

Daddy, "What are you worried about, Klausie?"

Klaus, even quieter, and practically in the fetal position: "I'm scared."

At this point, my full attention was on this conversation.  I was so thankful for the unusual quietness of the house and for the opportunity I had to hear Klaus finally put into words some of his feelings.

Daddy, "What are you scared about?"

Klaus, "I'm scared that you will die."

Did he really just say that?!  Matt and I looked at each other.  Could this 4-year-old who previously had never mentioned anything whatsoever about cancer or sickness or treatment or anything related to Matt's diagnosis just voice with clarity his concerns about his Daddy's life?!

Matt then reassuringly explained how his treatment would help the disease.  How the radiation would kill the cancer cells.  How the surgery would then remove the cancer from his body completely.  How his doctors are caring for him in the best way possible to keep him alive and healthy.  As I listened, I felt Matt broke it down perfectly for Klaus' understanding and reassured him tenderly.

Klaus, "They will remove the cancer from your bum cheek."

Daddy, "Yes, so that all the cancer is gone and I will stay alive and be healthy."

There was more to the conversation.  There were more sensitive and sweet words exchanged affectionately between father and son as they embraced each other in the silence of the living room.  I got to witness this reverent exchange and I can't stop thinking of it and weeping over the beauty of it. I consider it a miracle.

This 4-year-old who has been getting into trouble for acting out, bellyaching incessantly, and very difficult to live with has been worried.  And scared.  Scared that his hero might die.

With this miraculous exchange on my heart, it's been easier for me to be more understanding and patient toward this delicate boy.  When I see him, I see such a small and concerned child.  What a tender mercy.

What a Roller Coaster

This whole cancer thing has been quite a roller coaster.  And treatment hasn't even begun yet!  I've decided that cancer is stupid.  Sometimes I just want to shout it out loud, "Stupid cancer!!!"  That's my way of swearing.

A lot has happened but I'm usually too tired at night to update the blog.  Matt asked for and received approval for a PET scan.  He got the results on a CD.  He spent a few hours analyzing the results and the two of us together spent over an hour looking at all of the glowing things inside his body.  The more you glow, the more cancer there is.  Boy, looking at it ourselves was a mistake.  I worried too much waiting for the results of that scan, far too much.  I was sure he had it in his spine and various other body parts.  But the results came back and THANKFULLY there was no spread.

Then we went to the radiation oncology department at St. Joseph to consult with Dr. Goins who will be in charge of Matt's radiation.  We thought he would start treatment that day.  Ha!  Not for another two weeks.  She appears to be a competent doctor.  One thing she said which I didn't like to hear after examining Matt was, "Oh, that is a very bad location."  I think she was referring to the possible side effects he might endure, namely skin burn and diarrhea.  I am so worried about him suffering through this.  Some people don't have any trouble with radiation and some people suffer fatigue and burn and other side effects.

His radiation treatment starts tomorrow, Wednesday, Nov. 18 and goes through Dec 23.  It is low dose IMRT radiation for 25 treatments.  There are so many details I should be including but I am too tired to write them all down, sorry.

Four to eight weeks after radiation is finished, his next (and last?!?!) surgery will be scheduled.  That means it will probably be February.

Another point I really didn't like and that has been weighing on my mind was in Dr. Myron's report which we accessed at home.  He didn't say this to us directly but reported that this cancer has only a 35% long-term survival rate.  Didn't I say cancer is stupid?!!!

Radiation, here we come!

This week we met with two more members of Matt's team of oncologists at K.U. We liked both of them and felt they were providing us with excellent care. 

Dr. Myron is a medical oncologist.  He reviewed Matt's case and all of his scans.  He agreed with the diagnosis of proximal epitheliod sarcoma.  He explained the disease (all of this familiar) and then he reviewed treatment options (new information).  Chemotherapy has not proven effective for this cancer, partly because this cancer is so rare and there is simply not enough information on it.  If chemo is used, it is if the sarcoma has spread to other parts of the body but even then it does not kill the cancer and cure the patient but sometimes it stabilizes it for a while.  Grim news but hopefully we won't get to that point.  Dr. Myron spoke with Dr. Massey who we met with next.


Dr. Massey's expertise is in radiation.  She and Dr. Myron recommended radiation in this case to stabilize and sterilize the area that still shows cancer.  The question was whether to do it before or after the surgery.  She discussed with Dr. Rosenthal (the sarcoma specialist who will be performing Matt's surgery) and they agreed that radiation before surgery was the best option.  This is because the cavity from which they removed the tumor and the area surrounding it which will need to be removed is so close to important muscles in his body.  Matt's impression is that the preoperative radiation will make the surgery easier.  I can't explain it more clearly because my brain is tired.  Sorry!

Dr. Myron also ordered a PET scan because Matt brought it up.  It will show if there is any inguinal lymph node involvement as well as any cancerous activity in his right leg because for the past several days he has been experiencing very mild pain in his leg muscle.  This could be wholly unrelated to cancer and simply due to fatigue, however, it could also be a concern as tumors can grow anywhere in the body and often present themselves as aches and pains.  We might become hypochondriacs!

The consensus then among his oncology team is to have a PET scan (scheduled for October 29) and then begin IMRT radiation therapy.  It will be 5 days per week for 5 weeks.  He will be able to get it done in St. Joseph as Dr. Massey has complete confidence in the radiation doctor in St. Joe.  Matt will be able to work as normal unless the radiation burn gets too uncomfortable.  The possible and most likely side effects include skin irritation and tenderness especially as the weeks continue, fatigue (beginning the 3rd week) and diarrhea.  Finally, he will have his second surgery by Dr. Rosenthal to get rid of every evidence of remaining cancer in his bum.

Matt felt like he didn't belong at the cancer center.  Neither of us feel like this is real.  It is all so strange and new.  Thank you for your prayers.  We feel their sustaining power!

A New Normal

Our lives have changed with Matt's diagnosis.  Our routines have been interrupted.  Our health habits are changing.  What is normal anymore?  The big, bad "C" word has descended upon our lives.  Sarcoma is a diagnosis for a lifetime.  Even if treatment, whether it's surgery, chemo or radiation therapy, gets rid of all detectable cancer cells in Matt's body, sarcoma can return any time and any where.  Can a sarcoma warrior ever feel completely whole?  Or will there always linger a concern that this cruel cancer will strike again?

Matt has doctor appointments with a myriad of specialists.  He has tests currently scheduled and more tests in the future that remain to be scheduled.  He has another surgery.  He has other treatment options to discuss and decide upon.  During the days he is not being seen at some kind of medical facility, he goes to work as "normal."  But because of the two weeks he missed from the first surgery in September, he is playing catch up with grading and planning.  He goes into work very early and stays late at work to keep afloat, but he still has so much to do that he feels like he's drowning.  The good thing about being busy at work is that it keeps him from dwelling on the cancer diagnosis.  But his new normal is a lot of medical intervention and missed school and playing catch up at work.  And cancer.

I haven't even mentioned the new diet he agreed to follow (to make me happy) which I researched, planned and carefully prepare for him (to keep him alive longer).  We are both eating a super-duper healthy diet which includes only anticancer foods:

* Leafy greens galore
* Cruciferous vegetables
* Tomatoes
* Garlic, onions, etc
* Yellow and orange vegetables
* Berries, citrus fruits and juices and stone fruits
* All veggies except corn and potatoes
* Limited starchy vegetables such as pumpkin, sweet potatoes and winter squash
* Nuts and seeds
* Legumes
* Grass-fed meat and cage-free eggs (very limited)
* Certain fish such as salmon but we don't like these anyway
* Soy products including tofu and soy dairy
* 1 1/2 oz of greater than 70% dark chocolate per day
* Very limited multigrains

My priorities have shifted post-diagnosis from 1) homeschooling, 2) cleaning house, and 3) as much cooking as I could fit in to 1) cooking healthy, 2) cleaning, and 3) as much homeschooling as I can fit in.  At this point we don't do much formal school though I do a reading lesson and preschool with Klaus most days and the kids play, play, play and read, read, read constantly.  They do go to co-op once a week where they study subjects including physics, crochet, small business, geography, literature and multiplication facts.

I have had no ability to focus on home school.  The word cancer seems to invade every thought throughout the day and night.  There's no room to think of anything else.  I am processing it, I realize.  Some days I weep a lot.  Most days I feel good and strong.  But even on good days I can't focus on school work.  I focus on projects and cleaning and cooking and keeping the household running.  When will I feel normal again?   Will it ever be normal again?  What will the new normal be anyway?  We are all discovering our new routine.  Thank goodness we can discover it together.

University of Kansas Sarcoma Center

Today was the day of Matt's second opinion visit at a cancer center which deals specifically with sarcomas.  The doctor explained that less than 1% of all cancers are sarcomas which makes them rare enough that many oncologists do not have adequate experience with them for proper treatment.  In fact, at Matt's first oncology appointment, the doctor freely admitted that he was NOT an expert in sarcomas and that he had never encountered Matt's type before.

There are about 40 types of sarcomas, and Matt's diagnosis of epitheliod sarcoma is #39 or 40 on the list!  That is how rare it is!  The doctor said that there are about 12 cases per year in the entire country.  In addition to this, Matt's ES is proximal type, which is even more uncommon as this cancer generally appears on a person's extremity.  (I've always known he was special!)

Because of this cancer's very aggressive nature, the best treatment is surgery.  Matt's first surgeon was not able to do a second surgery.  We felt uncomfortable with this because there were still cancer cells left behind.  This sarcoma specialist, however, immediately acknowledged the fact that further and deeper surgery was required.  He ordered an MRI which he would use as a kind of map to delineate the areas in his backside that would need to be removed.  We are hoping that no particularly sensitive areas will need to be removed!  Seriously, it is a possibility!  Butt this cancer is so big, bad and ugly, that it is better for him to lose and reconstruct body parts than to let the cancer linger.  The doctor expected a 2-3 week period of time for healing.

We both came away from the appointment with assurance and confidence in this doctor's knowledge, experience and expertise with regards to advanced surgery and epitheliod sarcoma.  We feel he is in good hands.

After the pathology report comes back from the second surgery, we will know if the area is clean and free of cancer.  Then we will decide on chemotherapy and radiation options.  He has appointments with a radiation oncologist and medical oncologist at K.U.  The sarcoma specialist mentioned that this kind of cancer does not normally respond to chemo.  There is a small increase in survival rates with chemotherapy (10-12%) but with the dangers and difficulties associated with chemotherapy, that will be a decision we will have to carefully consider.

So... first the MRI (scheduled for Monday 10/12).  Then appointments with the other oncology specialists.  Then possible radiation before surgery, though this is less likely.  Then the second surgery.  Then possible chemotherapy and/or radiation.  He will be closely followed for at least 10 years.

I'd like to mention here how supportive and helpful our close friends and family have been.  Inspiring e-mails, simple phone calls, reassuring text messages, face-to-face sharing of experiences, babysitting services, and even just a simple hug.  They have all been so appreciated.  Thank you all!

Recommended Treatment

Matt heard today from the Mayo Clinic regarding his case.  The Mayo Clinic is ranked 3rd in the entire nation for cancer care.  Their recommendation for treatment is not chemotherapy, but radiation directed at the tumor site.  Dr. A.J. in St. Joseph said that this would take about 5 minutes of his day, every day, for a matter of weeks.  He might get a sunburn kind of reaction but other than that he would be able to continue his normal activities including work.

He was also able to be in contact with University of Kansas today and scheduled a second opinion at the sarcoma center for this Friday.  We're both really glad that this appointment is so soon.  At first when I called last week, the receptionist mentioned the soonest appointment would be a few weeks out.  Maybe his case is so urgent, they were able to get him an earlier appointment.  I don't know, maybe not.  Whatever the reason, we're both thankful.  We know a couple of people who have received care at the cancer center at K.U. and they've said that it's excellent care.

I also wanted to mention that Matt spoke in church this last Sunday.  I was in the foyer dealing with a very ornery Klaus.  I was surprised to hear him get up to the microphone to speak because the week prior he had broken down with emotion.  I worried for a moment that he would cry but as I listened I was thoroughly impressed with his composure and his strength.  He bore his testimony of the blessings he enjoys as a member of the restored gospel of Jesus Christ including an eternal family, sealed together for eternity in a holy temple.  It was moving to people listening who didn't know anything of his condition.  To those of us who knew that he had cancer, it was particularly stirring and strengthening.  We are learning about submission through this experience, that is for certain.

Proximal-type Epitheliod Sarcoma

So much has happened in the past week.  I wish I could write every day because there are so many emotions and conversations and phone calls but it's a miracle that I have 20 minutes to write once a week, it is so busy around here.

After I posted last Sunday, Matt and I had time in the evening to spend together and do a little research online.  At that point we did not have a definitive diagnosis.  We only knew that the pathologist's best guess was epitheliod sarcoma.  Let me tell you, doing research online on "epitheliod sarcoma" is not a pleasurable experience.  The disease is rare, less than 1% of all cancers.  It is also aggressive.  65% mortality rates after 10 years.  In males, it is worse.  (Check: Matt is a male).  Evidence of necrosis indicates worse disease (check).  Size of tumor greater than 2 cm (check).  Area of tumor, proximally meaning at the trunk of the body and not at the extremities, indicates worse prognosis (check).  It appeared as though all of the indicators that would give Matt a worse prognosis were going against him.

We cried and we talked and we wondered how and why!  But then we remembered that God is in control.  Each of our lives are in God's hands.  We will experience what is necessary for us to be comfortable in His presence again.  We prayed together and Matt's answer to prayer was the scripture coming into his mind, "Be still.  And know that I am God."  That brought me comfort because what I was feeling after the prayer was heartache.  I could physically feel my heart breaking.  I could feel the pain in my heart that I felt when my parents were divorcing.  But through talk and through tears, I too felt comforted that Matt's life was in God's caring hands.

On Monday he had his CT scans.  The two giant bottles of barium he had to drink weren't too bad.  We had the day together to take care of home and family.  He and I also stopped at the benefits office of his school district where he works.  The administrator explained how his 64 accumulated sick days need to be used up before applying for his short-term disability coverage if his cancer treatment required him to miss work.  We just signed up for that a couple of years ago because I had read Dave Ramsey recommended it.  I'm glad we did.

On Monday night we visited with a family in our ward who have become our close friends.  Her dad had cancer when she was a teenager.  She spoke about his experience with the disease and her experience as a child dealing with it.  We were glad to be armed with more information but overall it kind of made us feel sad.  We realized that death really could be a result of this disease.

On Tuesday, he actually had three doctor appointments.  The first was with his surgeon who said that his wound was healing well and that the CT scans showed no evidence of metastasis!  That was good news!  We raced to his primary care physician's office next to check in with her.  She just wanted to establish her relationship with him and offer her services in any way he needed.  All of his records will be in her office.  Then we drove back just in time to oncology.

We met with Dr. A.J. who unfortunately explained that the radiology report that had been sent to Mayo Clinic had not come back yet with a definitive diagnosis.  He couldn't offer us much information specific to Matt's case except that it was a kind of epitheliod sarcoma but there are many kinds of this sarcoma.  They react differently to cancer treatment.  Chemotherapy is usually not effective.  Sometimes radiation doesn't work either.  He answered our questions and explained things to us clearly but Matt came out feeling like he was downplaying the problem.  I felt really uncomfortable with the office itself.  It was rundown and dirty.  He did tell us that the surgeon was not willing to go back in to try to get all of the cancer out of the primary tumor site.  He took out all that the could see and would not know what else to surgically remove.  The greatest success with epitheliod sarcomas is to be sure and get rid of the cancer with wide, clear margins during surgery.  His margins were not clean.  There are still cancer cells at the primary site.

More waiting.  But at least Matt could go back to work on Wednesday.  I woke up on Wednesday wondering how in the world I was supposed to go back to normalcy.  I'm just supposed to do my normal routine now?!  I couldn't even remember what we were doing for homeschool a few weeks earlier.  It's like I went through my day like this:  "We have books to return to the library today.  Matt has cancer.  The baby needs her diaper changed.  I'll change it while thinking about the fact that Matt has been diagnosed with cancer!  The kids will be hungry for a snack soon.  I'll let them find a snack.  Matt has cancer."  It couldn't sink in for some reason.  I was just trying to process it but it just didn't make any sense.  Why does he have cancer?!  That day we filled in our homeschool records for the month of September and it kind of got my mind back into our routine.

Thursday morning we were actually doing school when I got a phone call from an emotional Matt.  I let the kids draw/color their maps on their own while he related that Dr. A.J. had gotten the pathology report from the Mayo Clinic back.  He was confirmed with a diagnosis of "proximal-type epitheliod sarcoma."  We were glad to have a definitive diagnosis (a friend of ours is stuck dealing with a kind of cancer that they don't even know about and can't diagnose!).  The bad news is that this proximal type of ES is even worse than just ES.  It is a more aggressive and more recurring than ES.  Proximal refers to the fact that the tumor was located on the trunk of the body.

Any kind of sarcoma is a diagnosis that a patient will have to live with for the rest of his/her life.  Matt will probably be monitored very closely to watch for recurrence which is very common.  This cancer is not a death sentence.  But it has opened our eyes up to the fact that fatality is possible.  We are spending time this weekend discussing what needs to be done in case of the worst.  We are checking on policies and writing a will.  We are crying and talking a lot with friends about their experiences.  I think it is finally sinking in.

But my plan is to get all of the death talk/plans over with now and then set them aside.  Matt and I are hopeful.  We are prayerful.  We are close.  We are studying lifestyle changes which may help prevent further cancer growth.  We are getting a second opinion from a sarcoma specialist at the University of Kansas.  We are fasting today along with family members and friends in a united effort to pray for a miracle and also to learn to submit to His will and sense His hand in this trial.