Sunday, August 29, 2010


I remember studying in my college psychology class something called Kubler-Ross' 5 stages of Death and Dying. Rather than type up a summary I think I will let Homer Simpson explain.

I don't know if this pattern is true for everybody facing a life threatening situation because I don't feel like I have experienced all the stages. I seem to be stuck on anger. However, this anger only seems to peek its ugly head up every once and a while. The perfect example occurred on our recent family vacation. We were driving through western New York and it was time for lunch. We have adopted a family vacation dining policy that states we will attempt to avoid dining at the common national chains of restaurants and eat at predominately local establishments. Sticking to this policy we stumbled across a quaint little restaurant called the Black Bear. Now my post-noma diet is pretty narrow and it can be a challenge to stick to, especially when eating out. I was fine when I walked into the Black Bear, but remember getting angrier and angrier the longer we sat there. It started with the menu. From the literature that I have been reading, the western diet may have a large part to play in the rise of cancer in the U.S. Let's face it, nobody really thinks that McDonald's is good for you, do they? So I am looking at this menu in the Black Bear and there is absolutely nothing on it that I should eat. However, we are on vacation and I'm going to cut myself some slack. So I order a burger and some fries, but avoid ordering a Coke.
The anger starts to swell as I look around the room. I see various families enjoying their dining experience. They haven't done anything to me, but still I start to get angry at them. The majority of them are not the image of health, yet here they are ordering whatever they want from the menu, foods that I have been told to avoid. Granted I am no triathelete, but I consider myself to be in pretty good shape. I'm not a smoker. I'm not a diabetic. I'm not overweight. Why do I have cancer and these people don't? It doesn't seem fair. Why do these people get to eat whatever they want?
I'm really angry by the time our food comes. I feel that with every bite of that burger I have shaved a month off my life. Yet these people will dine on their genetically-modified everything and leave the restaurant not having to worry about questions like "will I live to see my kids graduate high school?"
It isn't fair and that makes me very angry. Why did I have to get cancer?

The Pain is Back

I am finding it more and more difficult to find a comfortable sleeping position. The big 3 - my lower back, shoulders, and hips - are making me feel old before my time once again. Of course my throat hurts from just having a tonsillectomy, but that does not worry me as I am confident that that pain will go away as my throat heals. It is these other three that are cause for great concern. Early on in my chemo sessions I was able to stop using my pain meds because the chemo was reducing the size of the tumors that were responsible for causing the pain. Therefore, if I am to reverse the logic of my earlier experiment, the increase in pain and need for pain medication leads me to believe that the tumors are growing once more and once again causing pain. Upon notifying my doc of the return of the pain he wants me in to get a MRI done to verify what I fear is happening.

Saturday, August 28, 2010

Unconditional love tested

Why couldn’t it have been drugs? An addiction to cocaine isn’t that bad, right? Or how about crime? Or better yet, crime to support his drug habit. Then there is teenage pregnancy, an attractive alternative. At the very least, how about a complete and utter disrespect for his elders, bad grades, and the mouth of a sailor? There are so many ways for a child to rebel with varying degrees of “badness.” Why did my son have to pick such an extreme form of rebellion? I have to admit it caught me completely off guard. I should have seen the signs. Nonetheless the deed has been done. The crime has been committed. What is this heinous form of rebellion, you ask. What could be so horrible that it would test the very limits of my love for one of my offspring?
He bought an Ohio State Buckeyes t-shirt. Et tu, Brute? Could I get a little help with this knife in my back?

I am a huge University of Michigan Wolverine fan. And to somebody like me Ohio State is the enemy. They are, in fact, more than the enemy. They are the Voldermort to Harry Potter. Lex Luther to Superman. They are the Darth Vader to Luke Skywalker (before he learned he was his dad). There is enough bad blood between these two to make the oceans turn red. The rivalry is so intense that when they play in their annual football game it is simply referred to as “The Game.” So for my son to actually willingly and enthusiastically don a shirt from this atrocious institution represents the ultimate form of rebellion.

Maybe in hindsight I can now pinpoint various events or trends that led up to this tragic moment: the love of all sports, the memorizing of all the Division One athletic mascots, the absolute devotion to the acronym ESPN. I should also mention that along with the school-which-shall-not-be-named he bought shirts from the following schools; University of Florida, Notre Dame (there goes another knife, not quite so big, maybe a pocket knife, but a knife all the same) University of North Carolina, Texas Christian University, and Louisiana State University. He seems to love all things sports related and collecting shirts is the newest expression of that passion. But why Ohio State? Is nothing sacred? He is testing the bounds of my “unconditional love.”

I guess I can still take a little solace that while he may now own one Ohio State t-shirt, thanks to me and his Grammy, he has in the neighborhood of six University of Michigan t-shirts. He would have more but he has either outgrown them or worn them out. His last two jackets that he wears almost everywhere (even in the Texas summer heat) are, you guessed it, Michigan. So maybe there is hope yet. Maybe this is just a phase.

Friday, August 27, 2010

Two new floors at MD Anderson

With all our visits to MD Anderson, we've explored quite a bit of the main building and know our way around pretty well. But yesterday and today, we expanded our horizons to both the 5th and 6th floors.

We met with the anethesiologist folks on the 6th floor on Thursday afternoon so Josh could be quizzed about his history with anethesia. Nothing exciting, nothing of concern. Then and only then could we call the surgical line to find out Josh's assigned surgery time. Check in at 7:30am and within 1.5 hours, he'd be in a deep sleep while they exam his tonsils (and surrounding areas). Thursday was the least amount of time we've ever spent at MD Anderson. With only just over one and a half hours (1:30pm check in until our 3:05pm departure) spent there, we had plenty of time to meet the rest of the family up in the Woodlands to see our nephew play his first 8th grade football game of the season. Fun!

Then today, we reported in right about 7:30am to the 5th floor surgery wing (all the way at the other end of the hospital than we usually spend our time). At 9:15am, Josh was called back to the holding area and had to take everything else off and put on a lovely tie-in-back gown, knee-high socks and a blue paper hat (which he waited until the last minute to actually put on). Here he is:

Several people came by to talk with him, ask him questions, and require him to tell them what procedure he was undergoing (to make sure they had the right information). The resident who was to be assisting during the exam let Josh know that he had to mark his neck on his right side to make sure that during the exam they'd know which side they were to take the biopsy of the tonsil from. I figured that meant an X with the black marker, but instead the resident wrote a nice "Yes" along the right side of his neck:

At 10:53am, we were told that Josh's exam had started. MD Anderson has wonderful volunteers in the surgery area who connect with those waiting in the waiting room with updates from the doctor. We were told the exam would take about an hour and then we'd hear from the doctor on how it went.

Right about 12:30pm, we heard from the assisting resident that the exam went well. Everything looked healthy, but the top of the right tonsil did feel abnormal. They took both tonsils out so he'll have a sore throat for a week and has to eat soft foods for 2 weeks. Then we meet with the doctor again in two weeks after they've completed a full biopsy on the tonsil and know the outcome. If it's malignant, it's likely he'll get radiation in the area to ensure they've killed any cells left behind after the tonsillectomy.

Now Josh is resting in a hotel near the hospital to give him a day to get the anethesia out of his system. We'll head back home tomorrow.

Wednesday, August 25, 2010

Radical change in eating (and cooking) habits

Josh has always disliked cooking. He always said what he did was "follow the recipe." But more recently and particularly with how careful he's being with the food he eats, he has shown some true cooking flair. Experimenting with different combinations of food, looking at several different recipes and then crafting his own, showing interest in finding just the right spice to add to the dish.

For the dinner before the first day of school to send the summer out in style, I made calzones, one of the kids' favorite meals. The bad-for-you, white flour, pork sausage, lots of cheese kind of calzones. Josh opted for just a thin sliver of the calzone along with a bowl of fresh spinach, broccoli, cauliflower and brocco sprouts and a bit of fruit.

One night this week, Josh created a combination of whole grain brown rice, free-range organic chicken, kidney beans, salsa, sauteed garlic and other spices like rosemary, oregano and thyme that he served with warm wheat tortillas. The kids opted to partake only their obligatory bite before preparing some other food as alternative for dinner. We had the tortilla dish again tonight as a leftover and it was delicious even warmed up.

But his most rewarding cooking experience thus far was when he cooked chicken in a new way and Kate, upon trying it, gave it two thumbs up. It made Josh's night.

Here's the chicken cooking on the grill:

And the side dish of beans sauteed in olive oil with red peppers, garlic and red pepper flakes for some heat:

I'm enjoying this new side of Josh and love finding out about the other new experiences he's suddenly expressing interest in, like getting a motorcycle, playing on my co-ed indoor soccer team and traveling the world.

Saturday, August 21, 2010

The strength of a weed

On Friday my son and I mowed our lawn. He does the mowing and I do the weed eating and cleanup. Having just gotten back from our trip to New York and Canada the time between mowing had exceeding its normal length and therefore the weeds in the flower beds had grown beyond my comfort level. Considering the number of weeds that took up residence in my flower beds and the list of things I still wanted to get done that day, I decided that my course of action would be to pulverize the weeds with the weedeater. If you know anything about me you know that I buy the best tools I can afford. Therefore, I don’t own a wimpy, underpowered electric weedeater. When I take my weedeater to a weed with the intent to pulverize it, it gets pulverized. But you know what? I know without a doubt that when I go mow that lawn in seven days I will be able to look down at that spot and see that exact same weed. Smaller mind you, but there nonetheless and growing just as happy as can be. It made me stop and think. I can come back week after week and pulverize this little plant over and over again, taking it down to barely a nub of green, and time after time as if in utter defiance it will sprout new stems and leaves. How many living things in this world can take such abuse again and again and not die. As long as it has its roots intact this plant will do this little dance with me until the end of time.

Lord, give me the strength of this little weed. Let them do what they want to my body. Let them inject it with poisons, shoot it with toxic radiation, or cut it open and take stuff out. Let the cancer pulverize my body. Let the possible bad news of cancer spreading wear me down to a little green nub. But give me the strength in my roots; my mind and my heart, to again and again defiantly send out new stems, to send out new leaves. Give me the strength to look this noma in the eye and tell it defiantly "you will not kill me."

Friday, August 20, 2010

Status Update

Went down to MD Anderson yesterday for what was supposed to be an ultrasound, MRI and biopsy of the node they found in my neck during the last CT scan. Didn’t happen. Got in there for the 10 a.m. ultrasound and based on what they saw they said the node did not have the characteristics of a malignant tumor. It is probably a cyst and so they cancelled the MRI and biopsy. They didn’t convey this info very effectively to me and so my wife, my brother, and I sat around until a 2:15 head and neck doctor appointment (not with my regular doc) in hopes of getting some answers.

At the appointment the cyst issue was cleared up but another red flag came up. The resident doc sitting in on the appointment pointed out an irregularity in my tonsils. After bringing up the PET scan from June she noticed that the right tonsil was “lighting up” more than the left. It could be nothing, but it could be something.

So now I head back down to Houston on Thursday, August 26th to prep for a biopsy on that tissue and possibly to have my tonsils taken out on Friday the 27th (which, by the way, is my mom’s birthday. Happy birthday, mom!!!!!). Just the present every mom longs for: her child having surgery.

I don’t know if my frustration is coming through in my words, but yesterday was not a good day. The possibility that the cancer spread to my tonsils is not a comforting thought. Especially just having come off chemo treatments.

New Goal

Here is my new goal in life:

I want to know my grandkids and for them to know me.

Wednesday, August 18, 2010


After 8 days on the road, we arrived back home safely yesterday afternoon, welcomed by the heat of Texas. All in all, it was a great vacation, but it's always hard (for me, anyway) to come back home and get back into the "normal" routine.

A quick summary of the vacation:
  1. Fly into Buffalo, New York via New Orleans and Baltimore.

  2. Drive to Lake Placid area and stay in cabins for three nights. Highlights: horseback riding, kayaking, 25-foot cliff jumping into a river (Ethan is a maniac!), and lazy times together.

  3. Drive to Owen Sound, Ontario for the Van Sligtenhorst family reunion. Highlights: Stay with Josh's cousin and family (thanks for the hospitality!), get tours of vast Van Sligtenhorst-owned farms complete with amazing barns and homes, and celebrate with 9 of the 10 original siblings (and a good number of the descendants) who immigrated to Canada 60 years ago. It was wonderful to connect with relatives, some of whom Josh hadn't seen in ~20 years and some we'd never met or only seen on Facebook.

    The crew:

  4. Drive back to Buffalo area and spend a day touring the Niagara Falls area. Highlights: Ride a "jet boat" to get soaked and spin 360s in the rapids of the Niagara river, view the falls from above and below and from the U.S. side and the Canadian side, and learn some history.

  5. Fly back home, again via Baltimore and New Orleans.

The vacation was not without both physical and emotional impacts. Physically, Josh struggled with some hip pain during the beginning of the trip and his back was tight after sleeping on different beds not quite like his one at home. He tried to eat as healthily as possible, but it's difficult to always be good given the selection of foods available in restaurants. On the emotional side, two experiences stand out.

First, our kids are old enough now to have real opinions on what we do and where we eat. Unlike previous vacations, I didn't take the time to plan out (with opinions gathered from the others) the vacation in its entirety so we had moments of downtime that were too boring for some. And we had moments of too much activity when the kids just wanted to swim at the hotel. That makes for a bit of a struggle in the moment with the reality of four opinions, each pulling a different way.

Second, on Sunday morning at the reunion, we participated in a family-only church service that a few of the relatives organized. For the offering, we were surprised to learn that Josh's cousin suggested the collection go to Josh and our family to do something "we want to do, not what we need to do." Tears and hugs galore.

And now on to our "normal" routine. We're getting the kids ready for school (starts on Monday). Josh heads down tomorrow to MD Anderson for a biopsy on the spot in his neck. We won't know anything until at least mid next week after his doctor and associates are able to analyze and determine next steps.

Thursday, August 5, 2010

Another biopsy

I got a call from Josh around 11 this morning with an update from his meeting with his doctor. The scans showed further reduction in size of the two tumors in his chest, but given Josh's lingering side effects from the 6 rounds of chemo, the doctor recommends giving Josh more of a break before hitting him with more rounds.

The other news is that the scans Josh had taken over the past two days showed another something suspicious in his upper chest/neck area. But the spot didn't light up in the PET scan from several weeks ago.

So next steps: a biopsy to find out if the mass is malignant and surgery to have it removed if it is (it could be just a cyst).

Josh gets a dose of his bone-strengthening drug, Zometa, this afternoon (only a 15 minute IV infusion) and then he and the kids are heading home.

The cats and I will be happy to have them back!

Tuesday, August 3, 2010

Another trip to MD Anderson

At 4:45am yesterday morning, I wake to hear Josh getting his things together to head to Houston yet again. I can't go, once again, because work priorities supersede. It's not, however, without guilt. I should be with my hubby during this, even when he's not getting chemo. But alas, I can't make the time work this go-around.

I don't want to get up. I was up until nearly midnight the night before (after a nice family dinner and swim before the kids went to bed) and it's not even light out yet. But I can't just roll over and go back to sleep. Gotta see them off. I slide out of bed to make Josh a smoothie for the road with every intention of crawling right back in after they leave.

Josh gets the kids up and they bring their pillows and final packs of belongings they want to take along with them on the ride and stay at Grammy and Papa's house. The kittens know something is up - they're roaming around asking for pets from anyone who will stop to give them. Kate lies down on the floor and cuddles with Trinity for a few minutes and asks me to be sure to give her (and Kobi) love while she's gone. "Can she sleep in your room with you?" Kate asks. "Hmmmm....probably not." "But she won't keep you awake! She sleeps with me all the time!"

The kids love early morning departures. Ethan is a morning person so typically springs out of bed any day of the week before it's even light out. Even more so if we've planned an outing (like golfing, which he's recently gotten into) or school is in session. Kate forces herself to be a morning person when school is in session, but the summer is another story. She revels in late night shenanigans and loves her sleeping in until at least 10:30am days. But for trip, she's up, smiling, packing up the car, etc.

I see my family off in the darkness of the early morning. Back to bed for me. But after 10 minutes of attempts to shut off my brain and fall back asleep, I give up. I work on my laptop at home, then pause to get presentable to go into work, go into work and work all day. Unlike most times when my family is gone and I have the house to myself for a few days, I'm not up to the later-night movie viewing this time. I'm in bed by 8:15pm.

From my check-in calls throughout the day yesterday, I understand that Josh survives the first round of scans yesterday which focused on his head and neck.

Fast forward to today. Interesting news...

Josh survives today's scans as well, focused on his chest, abdomen and pelvis. But they were more than he expected to have. Not only did he have an IV, he also had to drink 2 "barium drinks" (his description if I heard him correctly on the phone). I'm thankful to his brother for being with him both yesterday and today since I can't. It helps to share the experiences (at least a portion of them) with someone and share conversations in the drive, at lunch, in waiting rooms.

I get a call back from a member of Josh's care team at MD Anderson after leaving them a message early this morning. The interesting news: Josh's doctor is considering going two more rounds of chemo. But only if:
1. The scans from yesterday and today show continued shrinkage and healing in the bones and other areas affected by the cancer.
2. Josh feels like he's up to two more.

Unfortunately I deliver the news to Josh via phone when he and his brother are eating lunch. Hopefully I don't ruin Josh's appetite today with the thought of enduring two more sessions with the "Wonder Juice." We'll know more tomorrow after the appointment with the doctor. Regardless, we'll defer the sessions until after our week-long vacation to NY/Canada that starts soon.