Accupuncture observed

MD Anderson offers myriad options for cancer patients, including many free classes to help both the mind and the body as well as additional services for a "nominal fee." Josh took advantage of one of those Tuesday afternoon: accupuncture. "Keep an open mind," Josh told himself, but he still gave me crazy looks as the points to enter the needles were identified based on Josh's areas of pain.

"Stick out your tongue....hmmmmm."
"Let me check your pulse." "Now your other hand." "Hmmmmm."
"You are so young. Only 38 years old. And with two kids 13 and 11 - you started very young!"

Diagnosis: too much dampness and flem in his body.
Treatment: Remove this dampness and flem through key points to help him not feel so weighted down and tired.

Josh lies on the table with a pillow under his head and under his knees. The accupuncturist presses a blunt stick into a pressure point in his leg and asks him to tell her when he feels a sharp pain. Pain point found, mark it with a red Sharpie (interestingly the same kind Josh always uses to label each piece of wood to keep track of it during the build process). Repeat for the other leg, both arms and the ears. End result: 5 needles in the right ear, 4 in the left, 2 in each arm and 2 in each leg.



Now rest for 20 minutes with the lights down low and a heat lamp on his feet (which always get cold without socks on). Then out come the needles and we're done. Josh expresses no immediate effects. Before we go, I get a primer on how to give an ear massage which is apparently the equivalent of a full body massage.

Next we wait to see if there is any impact.

Blessings

A benediction we heard often and oft repeated comes to my mind today:

You go nowhere by accident. Wherever you go, God is sending you, wherever you are, God has put you there; He has a purpose in your being there. Christ who dwells within you has something He wants to do through you wherever you are. Believe this and go in His grace and love and power.

Reflecting on our experience with Josh's noma thus far, a few of these "nowhere by accident" moments now have a huge impact:

1. Starting in summer of 2009, Josh's brother, Isaac, struggles long and hard with the idea of going to medical school after many years in drug development. He comes very close to not moving forward with it, but perseveres and is in the middle of his first year now. He has been a tremendous source of information and translation...I wouldn't be surprised if he decides to go into an oncology specialty with all he's learning.

2. In June 2009, we considered moving to either Chicago or Seattle where I had very good job offers, one of which I actually accepted until it was clear that it was devastating to Josh to actual go through with it. Being here in Murphy for Josh's noma has meant a huge support network of friends, Josh's family a 4-hour drive away, and a world-class cancer hospital only a 5-hour drive away.

3. In mid and late 2009, my parents, after 35+ years at Hastings College in Hastings, Nebraska, retire (OK, my dad is still doing some contract work for them occasionally, but close enough). My dad has already spent more than a week with us and will stay through the end of the week to be with the kids while Josh and I have been in transit back and forth to Houston. They're flexible to be here when we need them.

We are blessed...wherever we are. We have a purpose for being just where we are.

Time to start cutting

The doc from MD Anderson said he would call us on Friday to go over the test results and talk about treatment. Noon comes and goes and no call. Anna tries calling his nurse. Twice. No return call. Five o'clock rolls around and still no call. I figure there is no way that any doc is going to call after five on a Friday afternoon. My brother, who has plans to go out with friends, can't drink because, as the scientist in my entourage, he is supposed to be on the conference call with us asking all the smart sciency questions. I instant message Anna at work, "$5 says he doesn't call." Her reply is a simple "grrr." I call my brother and tell him he might as well go ahead and start drinking. Guess I will have the weekend to sit and wait for Monday to come around. Doctors.

Then to my surprise Anna comes in the door after driving home from work and she has the doc on the phone. Guess I'm out $5. We conference my brother in and start the call that I have been waiting for since the discovery of my own personal noma. It's time to take the offensive - it's time to start cutting. My doc goes over the test results: head MRI - clear, chest x-ray - clear, blood work - clear, chest CT scan - nothing new. He then goes over what he wants to do.

I won't even attempt to put that in here, because quite frankly, I can't. All I heard were a bunch of big funny words thrown around. It's like Woody Harrelson's character in the movie Doc Hollywood: "I could have gone to med school. It was just the science part that would have given me trouble." That is why I have my brother on the call. The doc seems to have a clear battle plan drawn up with a couple of backups in case the first doesn't work. I say I am ready to go, how soon can we start. Wednesday is the day. Anna and I are looking to go down a little earlier to see if we can take advantage of some of the other therapies that MD Anderson offers, such as acupuncture. All in all, I should be getting about seven hours of chemo for the first round.

If you have some extra time to pray that day, please send a few extra my way.

It's time to start cutting.

Measure twice, cut once

I am going to use an old saying in the woodworking world to describe my experience these past couple of days down at MD Anderson in Houston. As you probably know from previous blogs, Anna and I traveled down to MD Anderson on Tuesday morning to meet with a doctor on Tuesday afternoon. My mom, dad, brother, and wife were all with me in the exam room as we met with the doc. For a really neat take on that experience please see my brother's blog titled "Pride."

The doc seems good - no complaints. He actually suggested some other possible scenarios that didn't come up with my Dallas doc, providing mounting evidence that I should probably stick with MD Anderson for treatment. After me trying really hard to get some concrete solutions out of the doc and a course of action, the best he would give me is that he wants to run a few more tests. That is where the phrase "measure twice, cut once" comes into play.

He is trying to make sure he has all the information that he could possibly need before starting the attack. I understand, but frustrating. I wanted to start treatment three weeks ago. However, the nature of the tests does make me question a few things, though. Seems to me that he should be able to get this info he is searching for in one of the many plethora of tests that I have already had done. I push him on this issue and he comes back with a politically correct answer along the lines of "every lab has different standards," or "I couldn't quite see all the slides because of software compatibility issues." My brother thinks this is a polite way of him saying he doesn't trust the stuff coming from Dallas. Doctors apparently have a code that prevents them from openly criticizing another doc in front of a patient. Possibly more evidence to stick with MD Anderson.

So the next two days are spent sitting in various waiting areas of MD Anderson to get some more blood work, a chest x-ray, a chest CT scan, and a head MRI. The doc should have the results today and is supposed to call me at some point during the day to go over them with me and lay out a course of treatment. Back at home now I really hope I am at the end of the "measuring" part. Let's start cutting.

What you got?

Movies are a mainstay in our house, particularly during this fight with Josh's noma. Each time Josh has received news that was hard to take, he escaped to a movie that would make him laugh. It's a rare family dinner around the table that someone doesn't blurt out a quote from a movie and others jump in with the next line. We've even played a game at dinner where we go in a circle, each person having to come up with a movie quote and the rest have to try to guess which movie (I'm certainly the worst at this game).

One quote from Open Season sprang to mind yesterday as I was at MD Anderson waiting for Josh's appointment...

Beaver #1: Hey, what you got?
Beaver #2: Wood. What you got?
Beaver #1: Wood. You wanna trade?

Ethan has used this many a time for after-dinner chores when he's assigned clearing and would rather do dishes.

Ethan: Hey, what you got?
Katelyn: Dishes. What you got?
Ethan: Clearing. You wanna trade?

And it usually works (I'm not sure why Ethan would rather do dishes).

But this movie quote has a different meaning for me after yesterday. One of the diversions that the many waiting areas provide are jigsaw puzzles and Isaac encouraged/cajoled me into finishing a nearly-finished puzzle with "they saved the hardest part for you." Done (in a mere 6 minutes).

As I was sitting there working on the puzzle (without my glasses, by the way, which is quite a feat with my diminishing reading capabilities), I overheard the conversation between two small groups of people sitting in close proximity, who were also waiting for their appointments.

Woman: What you got? (OK, it wasn't actually those exact words)
Man: Thyroid cancer. What you got?
Woman: Brain tumor. Wanna trade? (No, they didn't really say this, but instead shared symptoms and sympathies.)

It's a different world we're now a part of. What you got? Wanna trade?

First visit to MD Anderson

We met with the doctor at MD Anderson in Houston yesterday. Josh's noma now officially has a name: squamous cell carcinoma of the lung. But he needs to go through a few more tests to understand exactly what the treatment plan should be.

There were four of us there supporting Josh through this next step: Josh's dad Abe, Josh's mom Lynne, Josh's brother Isaac, and me.


Now we wait to see when we can get our appointments for the blood work and additional MRI that he needs. Looks like we'll get in today and maybe tomorrow for all of it and then we'll head back home. The doctor will hopefully be able to call on Friday with the plan for treatment. The best case scenario is that Josh can go through chemotherapy near home and then trek to MD Anderson every 6 weeks for scans to see how his noma is responding to the treatment, but that all depends on what clinical trials are available near home versus in Houston. Either way, we'll make sure Josh gets the best treatment possible to help him fight his noma.

Where is the mute button?

Well, we are finally getting close. After about two weeks of just sitting around waiting, I am finally about to get to see the doc down at MD Anderson. Anna and I leave this evening for my parents' house down in Houston and then we will wake up early tomorrow morning to get to the appointment. Because of the time span between my last doctor appointment and this one, my whole noma thing has kind of been put on the back burner. I even managed (with much help from my lovely wife Anna and Julia) to install a kitchen during this spell. Now, with this long-awaited appointment staring me in the face, all the thoughts, worries, and questions start to rear their ugly little heads again. The little voices in the back of my mind that bring up things that I don't even want to think, much less say. I am trying to remain strong, but these voices manage to get a shot in here and there. Where is the mute button?

The Battle

[Katelyn, aka Wordpainter13 (Josh's 11-year-old daughter)]

For me, the word "cancer" has always been irrelevant, something that could never, in a million years, happen to anyone in my close-knit family. So, when I was told that my dad had cancer, I was basically in shock. It seemed like a nightmare, something fake and impossible because, looking at him from the outside, you couldn't tell, he looked just like he had yesterday and the day before that. When I was first informed, I remember crying onto his shoulder and lying there in a family hug for a long time. He told me that I would see him fight like he had never fought before and, right then, I knew we could get through this. I still worry, however, every night I pray for him to win this battle. And I know in my heart that he can. We will fight together. We will help each other. We will have victory.

love is more thicker than forget

A poem my mom shared with me... Love you, Josh.

love is more thicker than forget

by e. e. cummings

love is more thicker than forget
more thinner than recall
more seldom than a wave is wet
more frequent than to fail

it is more mad and moonly
and less it shall unbe
than all the sea which only
is deeper than the sea

love is less always than to win
less never than alive
less bigger than the least begin
less littler than forgive

it is most sane and sunly
and more it cannot die
than all the sky which only
is higher than the sky

Aches

Work beckons. Josh is driven to complete a kitchen project for a customer despite his aches and pains, despite the constant barrage of pills (OK, three twice a day) he downs to control the pain throughout the day and night.

So yesterday, all the beautiful chocolate-stained rift-sawn oak (did I get that right, Josh?) cabinets needed to be delivered to the customer's house. Josh says, "I can do it all myself." I say, "No way." But he would have. And smiled while doing it. Then regretted it later.

But instead both Julia and I help Josh load up the cabinets in a U-Haul truck, drive to the house, unload them, carry them up a flight of stairs, and line them up in the kitchen area in preparation for installation. Despite us girls' presence, Josh is doing the majority of the heavy-lifting. The drive home was quiet, but Julia's comment on the way back to the house with just me (as Josh took the U-Haul back) was "That felt really good to help Josh today. I got to see what my American Dad does for work."

So he didn't do it himself, smiled through it all, but he still regretted it later. Returning home around 3:30pm left Josh feeling aches and pains throughout his body, so much so that it's all he could do to get to the couch and veg the rest of the day. And this morning is no better. So instead of pushing it and getting back out to the customer's house to start the installation, Josh is spending a much deserved day of rest on the couch. Good choice.

Can I crash on your couch?

I remember having a conversation with Anna several years ago about different kinds of friends. A point in that discussion that stuck with me was about how certain people tend to be, for lack of a better word, connectors. By that I mean that they work (or possibly it just comes naturally and so don't really work) at staying connected with the friends that they make throughout life. Friends for these people don't just drop off the radar as life circumstances take us this way and that. They somehow manage to not only stay in contact, but maintain some resemblance of a friendship even if time and distance are working against them. I have a friend out in California that I would call a connector. Because of many moves, he has lived several states and consequently left behind a trail of friends. It would be interesting to sit down with him at some point and find out which states he could not find a couch to crash on. I know his list would be a lot smaller than mine.

I seem to lack that elusive quality. A prime example of this presents itself front and center with the whole situation with my noma. Having news like this can cause you to rethink several aspects of your life. One of those for me was a strong urge to reach out to friends that I haven't had contact with for a long time. Thanks to the miracle of Facebook, email, and the internet, I was able to track down some old buddies from the past. But because of my inability to maintain those friendships to some degree over the past decade or so, my feeble attempt to reestablish those bonds goes a little like this pathetic exchange via email...

Me: "Hey Billy Bob Joe! Is this a working email for you?"
Billy Bob Joe: "Hey Josh! Yes, this email works. How are things going?"
Me: "Not so good. Turns out I have cancer. How are you doing?"

Why does it take getting cancer for me to dust off those friendship bonds? My best friend from high school will periodically call me on his way home from work. Connector. Have I ever called him just to chat? Not that I recall. Why not? Was my life before cancer so filled to the brim that I couldn't fit anything else in? My dad has tried to impart on us kids the importance of relationships- both family and friends. It is a lesson that I am still working on.

A Weekend to Forget

We just had a weekend to forget. Not one of those weekends that you want to forget everything that happened. But instead one of those weekends that you forget any troubles, lose yourself in the moment, and know that life is grand.

Saturday morning (the beginning of Spring Break) starts early with a gorgeous sunny day and a 9:00am soccer game for the 6th grade Hot Tamales. Katelyn, aka Mustang, sprints down the field with the ball between her feet, juking player after player. She crosses the ball to her right for an assist! Coach Anna, aka Mom, cheers. With nary a win in the previous three seasons, the Hot Tamales go up 3-2 with this 7-0 rout. Nice that we're playing primarily 5th graders this year...we'll take any advantage we can get.

Ethan, aka Assistant Referee, is all business on the sidelines, pretending that he doesn't know us so that he can earn his $16/game fee even though the rules say that he's not supposed to ref for a game his family members are playing in. Complete objectivity and impartiality. Nice job, buddy.

With leftovers from the gigantic dinner from Olive Garden that the kind, kind folks of my employer (Telligent) provided Friday night (which prompts Katelyn to say "I am going to work at Telligent when I graduate."), we all drive down halfway to Houston to meet Josh's mom and the kids' cousin Llew, leaving the kids to hang out at Grammy and Papa's farm for several days. They love nothing more.

Julia spends the day/night with a good friend, so that leaves Josh and me to ourselves. Movies, good food, a nice hotel room, time alone, sleeping in as late as we want. He's feeling good this weekend, despite not sleeping terribly well without his special couch-cushion bed in the closet at home. A walk around the neighborhood, critiquing landscaping, creates a feeling of satisfaction as we look at the beautiful scene Josh has created in our own front yard. Another movie to lose ourselves in.

A weekend to forget.

The Monster Within

To look at Josh, most would think that nothing is wrong. He looks healthy. I sometimes even forget that anything is wrong as he does what he's always done - plays some hoops with Ethan, cajoles Kate to bed, chats with Julia at the kitchen table, works on the latest kitchen at the shop, exercises, and does housework. But outward appearances belie the monster within.

And at times that monster rears its head, sometimes in the form of a sadness and fear so deep it's scary. And other times it shows in Josh's lack of strength in his right arm or his slowness getting in and out of the car because of his back and hip. Or the worry about new pains that weren't there yesterday and the delay in getting started with chemotherapy until the last week of March.

We continue to pray, think positive thoughts, watch lots of comedic movies, and love the cards, dinners and support we're receiving from all of you. Today we take Ethan and Katelyn to Houston to spend time with Josh's folks and their cousin at their farm. Julia, our about-to-be-17-years-old exchange student, is spending the night at a friend's house while Josh and I get to spend some time together alone.

Monster, go away. We've had enough of you.

Caretaking

I am not a good caretaker. Just ask my husband and my kids. When anyone is sick, I tell them to get up and get their own food or anything else they need. "Just buck up, stop feeling sorry for yourself." I don't have sympathy or empathy. And when I'm sick, I don't expect or want to be pampered.

But I find that in this situation, I've never felt more driven to care-take ever before in my life (except maybe when my kids were itty-bitty babies and that lasted pretty much only until they were able to move around on their own).

I'm doing anything I can to help support Josh in his fight against his noma. Want some pie? No problem, I'll get it for you. Need help up at the shop? Bring it on. Need a nap? I'm cooking dinner. Want to watch another comedy so you can laugh? I'm in. Need a massage? Every night.

Every waking moment is put into extreme focus. Caretaking FTW (for the win).

What Now?

Today I find myself in a weird position. I don't have any doctor appointments. I don't have any CT or PET or MRI tests scheduled. I have most of my hospital paperwork done. What do I do now? Dealing with my noma has been such a whirlwind of activity as of late, it has seemed almost like a full time job. Everything was centered around it. But now because I can't get in to see the doc down at MD Anderson until the 24th, and my doc up here doesn't need to see me until after I see that doc, I find myself staring at an Outlook calendar that doesn't have anything on it. Anna has gone back to the office. There is not much else to do now but wait. I guess I could get back to my regular job. I have a full set of kitchen cabinets sitting in my shop that need to be delivered to a woman that has been very patient and understanding. Feels weird to return to a "normal" schedule.

The other day Anna and I went to Panda Express after a doctor visit. I wanted to share the saying that I got in my fortune cookie: "You will have many friends when you need them." Just want to say a big thanks to all of you that have shown me such love and support over these past few weeks. I am a very blessed man.

One last thing. Want to share a bible verse my mom read to me this past weekend.

Joshua 1:9
"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

History 101

One of the things that I have done to help me with the battle I find myself in is to create an "Inspirational" playlist on my iPhone that contains songs that can't help but lift my spirits. I play a couple of songs before I go to bed every night and I really crank them up when I am on the stairmaster or the elliptical at 24 Hour Fitness every morning.

One of the songs is Tubthumping by Chumbawamba. Strange name and I am not sure the overall meaning of the song, but I can tell you that I love the chorus. It has become my mantra. It is a loud, heart pumping repetition of:

I get knocked down, but I get up again
You're never gonna keep me down

This is a good summary of my experience up to this point. About fifteen years ago I was diagnosed with a degenerative disk in my lower back. Over the years it would flare up from either stress or physical exertion, but I would take a couple of Ibuprofen and relax a bit and I would be back to normal. This last time that didn't happen. Back in September or October, I actually don't really remember exactly when, I started having an episode that wasn't going away. I went to Texas Back Institute in search of some answers. The x-ray again confirmed the degenerative disk, physical therapy was prescribed along with some over-the-counter pain med and I was sent on my way. Did the exercising thing, bought (and later returned) a Tempur-Pedic bed, went to a chiropractor, used an inversion table - all done in the attempts to stop the back pain. You name it, I tried it. With the exercises and the Naproxin I seemed to be managing the pain. I would have my good days and some would be bad. However, I was never able to kick the Naproxin. Fed up, I headed back to Texas Back Institute in February to get a MRI done of my back in hopes of identifying something else that may be going on back there. Well, they found something. After two MRI's on the same day my back doctor has me in his office telling they found Lymphoma back there.

I get knocked down, but I get up again
You're never gonna keep me down

They refer me over to the North Texas Oncology and to Dr. Stokoe. He orders some tests: a body CT scan and a biopsy of the mass in my back. They throw out the name lymphoma and insert the name carcinoma. "Melanoma, carcinoma, some kind of noma." For some reason that I am still not sure why, the biopsy comes back inconclusive. However, the CT scan shows a couple more masses in my chest.

I get knocked down, but I get up again
You're never gonna keep me down

Dr. Stokoe orders a full body PET scan along with a head and neck CT scan and another biopsy on the mass in my chest. I drink the radioactive milkshake and have my PET scan. The technician, "off the record," tells me that several more spots light up, technical speak for "not good."

I get knocked down, but I get up again
You're never gonna keep me down

I have the other biopsy done on March 5th. By this time I have decided to apply for treatment at MD Anderson hospital down in Houston because it is supposed to be one of the highest rated cancer hospitals in the country. My wonderful little brother, who has been helping with the whole MD Anderson thing, uses his contacts from UT Houston med school to get the name of the doc his advisers think I should see. The good doc agrees to see me, but he is on vacation until March 24th.

I get knocked down, but I get up again
You're never gonna keep me down

I go to Plano Medical where I had my biopsy done and make the request that they send some samples down to MD Anderson so that they can also run the necessary tests. Plano Medical, however, stops their testing and sends the whole kit-and-kaboodle down to MD. I was wanting two separate places to test it so that we could have two independent reports. Not happening.

I get knocked down, but I get up again
You're never gonna keep me down

Today, my head and neck CT scan were clear. Finally a victory! Dr. Stokoe calms me down on the whole biopsy shipping debacle and the delay in seeing the doc down at MD Anderson. Today is a good day.

Vacations

I love vacations, especially those which involve travel, be it a road trip from Texas to California or a plane ride to anywhere new and exciting. The mountains would be good, but a beach is fine, too. And I love to hear the details of and look at pictures from other people's vacations, partly so I can plan more of my own.

But now a vacation stands between my husband and the chemotherapy he needs to start as soon as possible.

On Monday, we had Josh's biopsy slides sent down to MD Anderson and through a miscommunication with the pathology lab, they sent EVERYTHING down and didn't keep anything to continue to run their own tests. And the doctor we've been referred to down at MD Anderson is on vacation until March 24.

Josh keeps saying, "It is what it is."

So we wait until after the doctor returns from vacation. Time to take one of our own?

Some Kind of Noma

The title of this blog comes from a favorite movie of mine called Fletch. Made back in the 80's, it stars Chevy Chase as an investigative reporter for a Los Angeles newspaper. In his adventures, a man attempts to hire Fletch to murder him because he says he is dying of cancer. Fletch isn't buying any of it and so he starts to investigate. The trail leads him to a hospital where, posing as a doctor (Dr. Rosenrosen), he manages to make his way to the records room. After conning the nurse to let him see the medical records of this man it is then that Fletch delivers the comedic line to the nurse, "one of my associates was doing a biopsy on this man very recently, and they said he had melanoma, carcinoma, or some kind of noma." That hilarious line that I have laughed at many a time has changed for me.

Turns out I have some kind of noma.

It still feels surreal saying that. I am in the middle of a bad dream and I keep waiting to wake up.

I have been told that among the many other things, such as diet and exercise, that journaling can be therapeutic and useful in coping with this bomb that has been dropped on me. I have chosen to blog instead. It has been so long since I have written anything of any length by hand that I believe I would have to up the dosage of my pain meds to cope with the hand cramps that would come about if I were to hand write a journal. Plus I plan to utilize this blog as another tool- a source of information for the many wonderful friends and family that have reached out to me. I quickly realized that if I wanted to personally respond to every inquiry I receive as to my status, that it would take a great deal of time and I would have to severely have to cut back on everything else I am trying to do.

So what you are going to get by reading this blog is some of my thoughts and feelings as I take this journey with my noma, as well as updates on my care and physical condition.