Wednesday, December 22, 2010

No 40 yard dash for me

I regularly try to make it up to 24 Hour Fitness to get in some exercise. I realize how important it is to keep these old bones moving in this battle with my noma. But it is difficult on a couple of different levels.
  1. Physical state. Not only does my body not want to cooperate I would actually rather just stay in bed. My anemia has left me feeling drained and depleted. I regularly get dizzy just from standing from a seated position. Naps sound like a splendid idea throughout the day. I have lost a little bit more weight and my appetite just doesn't seem to be cooperating and allowing me to put the weight back on.
  2. Psychological aspect. Here I am in a gym, surrounded by people sweating and grunting and pumping iron. There are quite some physical specimans there and they could easily give a person in much better condition than me a complex. But even those people don't get to me like the ones I see on TV. Like every other gym, the place is full of flat screen TVs and I gravitate towards the ones with ESPN on them. There you see athletes of all sports, be it football, basketball, soccer, tennis competing at such high levels. Amazing fine-tuned athletic machines performing at stratospheric levels. I glance at a football highlight and there is a video of a wide receiver catching a pass and running at full speed towards the end zone. And I wonder what it feels like to run full speed. I haven't run at full speed for probably about a year. I miss it. The best I can muster is a slow jog around the gym. Five laps is about all I can manage before it feels like my heart is going to imitate a scene from the movie Aliens and come leaping out of my chest. It shouldn't be like this. I shouldn't be like this.

My dad recently threw out his back lifting something that he shouldn't have been lifting. He has had, or should I say is still trying, to come to terms that he simply can't do what he used to be able to physically. But it is hard for him to do, as I imagine it is for people of all ages to admit physical limitations. However, for me at 39, it feels even more wrong. I should be able to do more. I wish I could do more. I long for the days when I could run at top speed.

Wednesday, December 15, 2010

Update

Last Friday I had another biopsy done down at MD Anderson. As I mentioned in a previous blog this was done to get some more tissue for them to test to see if I qualify for a clinical trial. The biopsy came off with out a hitch. In fact I was more awake during this one than I had been for my previous two. I got a call today saying they have my tissue slides ready and they are going to send them off for the test. I should know by late next week if I qualified or not. What a wonderful Christmas present that would be.

Not much else going on right now other than that. My days are pretty normal and boring. I am fatigued a lot. By 3 in the afternoon I just want to lie down and take a nap. Don't know if this is still related to the anemia or not. Doesn't help matters that I am writing this at 10:51pm. Still trying to work out in some fashion every day. The work outs are not long and they are not complex. Just trying to get the heart rate up a bit and put a little stress on the old body. The neuropathy is still pretty bad in the feet and so that limits me on how long and how hard I push myself.

I have really come to enjoy my lunch dates with friends. I have always been an introvert and done quite well at spending time by myself. Working by myself was never a problem either. Matter of fact, I kind of enjoyed it. However, there seems to be a slight shift going on. I find myself not enjoying sitting around the house by myself. It has become harder and harder to drag myself up to work knowing that I will be alone there as well. I don't feel like I am sitting around moping or feeling badly about my situation or anything like that. I just find myself looking forward to the outings and how they break up my otherwise solitary day.

Monday, December 6, 2010

Switching seats

Yesterday I got to participate in an experience that as of lately seems to be very rare. I got to go to a doctor, but not as the patient.

My wife is experiencing some extreme pain in her upper left shoulder. All signs point to a pinched nerve, but it is hard to know for sure. After enduring 5 days of high level pain she finally decided yesterday to bite the bullet and go see a doc even though we highly suspected that they would just tell us what we already knew. So about 4:30pm, I drive her to Care Now (we have come to love the convenience of these clinics over our family practictioner) and enter a process that I have become all too familiar with lately: fill out forms, nurse checks vitals, wait for the doc in a small examination room, and get examined.

But this time I got to sit in the "support" chair. I was there, not as the patient, but as the one who gives moral support and encouragement. I didn't have to hop up on the exam table. I didn't get interviewed. I didn't get poked and prodded. It was nice. Don't get me wrong. I am very sorry that my wife is in pain and that we had to go to the doctor in the first place. But being in the "support" chair was a refreshing change of view. I relished the chance to be the caretaker instead of the sick one and I enjoyed the role swap even if it was for a brief moment.

There was another emotion swimming around in me also, though. Again, while I am sorry for my wife's pain, I experienced a certain joy that I wasn't the only sick one around. My wife and I shared something in common. We were both not feeling well. I had somebody to commiserate with, somebody on my team. The doctor even prescribed the same medicine that I am taking for pain. Granted, our illnesses are completely different, but for a moment, I didn't feel special - called out from the crowd because of some extraordinary characteristics. I realize that may sound sick, that I would take joy in somebody else's pain. But it gets hard on a guy being the only sick one in a family. You get tired of being "special" under circumstances like this.

And it will be a brief moment indeed. This Thursday I head back down to MD Anderson for some tests and then ultimately for another biopsy on Friday. Looks like I will be hopping back onto that exam table real soon and back to my familiar view of loved ones in the "support" chairs.

Thursday, December 2, 2010

Feeling a little better

The Wednesday before Thanksgiving I was down at MD Anderson and received an injection of radioactive isotopes. No superhuman powers, but I do believe the isotopes are doing their job. I am still on the pain medication, but I feel that my overall pain has decreased. There have been some side effects: mostly nausea, dizziness, and fatigue. Some of my fatigue can also probably be attributed to being close to anemic.

According to the stats, the average expectancy of pain relief from the isotopes is about 4 months, although there have been cases reported of it lasting over a year. I am hoping for the year route. It is a treatment that I can repeat down the road if the pain returns.

I also met with a researcher at MD Anderson regarding my potential participation in an upcoming clinical trial. They needed my permission to run some tests on my biopsy sample to see if I would qualify. The tests came back "uninformative," which means they need to do another biopsy they can run tests against. Apparently a very small percentage of people qualify for the clinical trial (3 to 4% of those tested), but those that do qualify, 80 to 90% have shown very encouraging results. So I have agreed to have another biopsy in hopes that I will be able to participate in the study. I have yet to hear back about when the biopsy will take place. Prayers about the upcoming biopsy and that I would qualify for the study would be greatly appreciated.

Tuesday, November 23, 2010

Spiderman: Round 2

Well, it looks like I get another chance to become a superhero. Tomorrow I will be down at MD Anderson again to receive an injection of radioactive isotopes if all goes according to plan. Since the beam radiation turned out to be a "no-go" for my pelvic region, the doc and his buddies decided that this was the next course of action.

My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.

Wednesday, November 17, 2010

Acceptance

In one of my earlier blog posts, I made reference to the stages in the Kubler-Ross model grief cycle in which the last stage is acceptance. At what point can a person look their own mortality in the face and accept it? At what point can they reach an inner peace with the fact that their days on this earth are near an end?

In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.

Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.

I am trying like hell not to give up, but at what point do you start working on the acceptance thing?

Friday, November 12, 2010

More learnings

Here's an update on what we learned at our appointments today.

Shoulder
. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.

Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:
  1. Foot massages (self given since he's extremely ticklish)
  2. Move foot around in a bowl of rice to stimulate the senses
  3. Wear fuzzy socks occasionally to change up the sensory routine
  4. Wear looser, more cushioning shoes
We're ending the day with an MRI of the pelvis (after an x-ray of the pelvis and femur to make sure there are no near-fractures that need to be treated). Time for the weekend...

No more jumping rope...at least right now

Josh has, despite the additional pain he's been feeling over the last 5-6 weeks, been continuing to try to work out 3 times a week, including jumping rope, bench press, step-ups and the like. Yesterday, the doctor told Josh that he's not to jump rope or do anything more physically demanding than walking for the near future because of the risk of fractures.

We learned yesterday that:
  • The primary tumors in his chest are still stable (after their considerable reduction with chemo).
  • He has a very small mass growing next to the two primary tumors, but the doctor isn't worried about that yet.
  • The cancer in his bones (particularly his hip area) has surged since last time...hence his increased pain.
  • The radiation he had to his L5 vertebrae in his back did great things to beat the cancer back in that location. The doctor is very excited about this result.
Bone Pain. Today Josh gets a pelvic MRI and Monday he gets another lower back MRI. And he meets with a radiation oncologist on Monday to understand the plan of attack. The options it sounds like we have is either radiation in a pill form that will attack the cancer in all his bones or traditional radiation targeted in all the areas they can hit (rather than taking a selective approach on where his pain crops up). It depends on what the MRIs indicate. Unlike the last radiation round that Josh took up in Dallas, he'll definitely be in Houston for this one since it's much more involved.

Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.

Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.

Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.

Monday, November 8, 2010

Test Week

This is the week my wife and I head back down to MD Anderson for the next set of two-month scans. My last day of chemo was July 15th, so this will be the second round of scans post chemo to check to see if the tumors are stable or progressing. I have CT scans and MRIs and X-rays set up for Wednesday and then meet with the doc on Thursday to go over the results. My gut instinct tells me they are stable. Don't ask me why I think that...I just have a feeling. The rest of my body: that's another story.

I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.

Monday, November 1, 2010

Atypical diet

At 39 years of age I have to admit there were times I wished I had the physique of my high school days. I have never really been overweight, but looking in the mirror I sure would have liked to make that stomach bulge I see go away. Mission accomplished.

Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!

Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:
  1. I don't feel good.
  2. I rest to take it easy.
  3. I become inactive.
  4. I don't eat.
  5. I lose weight.
  6. I get weaker.
  7. And back to #1: I don't feel good...
I am finding it hard to break this spiral. I have never had to eat to gain weight before and I am not really sure how to do it. If I were on the outside looking in on my situation, I could see myself as being one of those guys who would reply with a simple "just eat more." But it isn't that simple.

My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.

I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.

Thursday, October 21, 2010

Family

Not too far back my mom gave me a picture frame with the caption "The love of a family is life's greatest blessing." In it she put a picture of my wife and I with our kids when they were about five or six years old. There is something about looking at the faces of my kids when they were younger that just pulls on the ole heart. Not that I don't love them to death now and think they are beautiful kids, there is just something about the images of when they were younger that gets to me. Perhaps it is because it automatically triggers a flood of great memories that we have shared. Anyway, I have placed that picture where I can see when I wake up to remind me that in that family category I am truly blessed.

I feel I could speak volumes about just my wife and kids and how wonderful they are if I possessed the soul of a writer. Then maybe I would be able to articulate my love for this woman who agreed to be my wife and share her life with me. I wish I could write poetically about her strength and beauty and how she has been a rock for me in these difficult times. To thank her for giving me these two wonderful works of art, so beautiful and smart. Just looking at my kids brings me so much joy.

But my blessings extend past my immediate family. It extends to my father who, being far more advanced in years then me and having mowed 20 billion lawns that day, still feels the need to help me carry my luggage down the stairs because he is concerned about my physical state. It extends to my mother, who happens to be 1500 miles away right now but still remembers to call for a status update because I happened to see the doctor today. To my little brother who has given up countless hours of personal time in order to research my disease and accompany me down to MD Anderson and literally sit for hours waiting on doctors. To my grandma who apparently has all of Newaygo County, Michigan praying for me. To my older brother, whom upon hearing my diagnosis, travels thousands of miles to be with me even though he is going through a rough spell himself. To my sister-in-law who hand knits me a scarf to keep me warm when we traveled to Michigan. To my other sister-in-law who buys me a year's subscription to Netflix to give me something to do while being down and out from the chemo. To my father-in-law who calls on a whim just to discuss one of my favorite topics: college football. To my mother-in-law who gives us a large sum of money to help with the medical costs. To my nephew, who upon hearing my diagnosis, shaves his head as a sign of support. To all my relatives on my dad's side of the family that welcomed us with open arms and love and support this past summer at a family reunion. And so many others.

Whatever the outcome of my journey with this noma ends up being, I travel this road knowing that I am truly blessed.

Tuesday, October 19, 2010

Ups and Downs

We have all heard the metaphor that life is like a roller coaster. It has its ups and downs. But really, lately I feel like my life takes Run Away Mountain at Six Flags and kicks its butt (that is an amusement park here in Dallas for you non-Texas readers). I have been happy, I have been sad. I have been feeling good, I have been wallowing in pain. I have been optimistic, I have been beaten down. Keep in mind that these changes sometimes don't happen over weeks but happen in the same day. "What do you expect considering what you are going through?" I have been told many times. I don't know. I have never been through anything like this before.

A week and half ago I went to my daughter's soccer game at 9am on a beautiful Saturday morning. I started to feel some pain come on. I took some pain meds and did my best to grin and bear it. However, by lunch time I was lying flat on my back on the couch unable to really get up. I had extreme pain in both knees, both hips, both shoulders, and both elbows. Strangely, my back really wasn't bothering me. Where was this pain coming from? Earlier that week I had my monthly massage and left there feeling really good. Now here I am unable to get off the couch. Talk about roller coaster. I ended up spending that whole day, literally until I went to bed, lying flat on that couch. I loaded up on the pain meds and tried to ride it out. Fortunately, college football was on to keep me entertained.

Given my current health condition I am trying really hard to listen to my body. I am keeping a pain log so that I have a record of what hurts and when and what I may have done to cause it, and how I treated it. Just looking for any pattern or trends that may help in my battle. But I couldn't make any real sense of this latest pain outbreak. It had these characteristics, but not those. It felt like this, but a little different. The best I can figure at this point is that I had a small reaction to a cold. I ran a low fever at one confirmed point and probably had at another also if I had taken my temperature. Pain meds that help with fevers seemed to give me more relief than others. That all seemed to indicate the cold scenario. But it wasn't conclusive. And one thing I hate is loose ends.

Then my mind goes down that dark path. What if this is my body shutting down? What if this the cancer taking over and I am on the start of the end? When I first met with the doc down at MD Anderson he felt it necessary to give me the prognosis of somebody with stage 4 lung cancer as I have. The typical patient lasts about 7 months. Here I am at about 8 months from the initial diagnosis. (Everybody join in and sing "Happy you lasted longer than the typical cancer patient with stage 4 lung cancer to you" to the tune of "Happy Birthday") Granted, he also said I am not the typical cancer patient. The next date he threw out there was 2 years. Is that how much I can expect? The last number he threw out was that some live 5-7 years. Better, but still not good enough. If the end is now about 4-6 years away then I am still missing way too much of my life.

How do I get my body back on top of this again? Is it even possible? I have lost about 30 pounds from my peak weight during chemo. I know it is strange that I actually gained weight during chemo, but I did. My bones are showing when I look in the mirror. My mind seems to still be good. I still have a belief that I can get back to where I was pre-noma. Just hope I am not fooling myself.

Thursday, October 7, 2010

Happiness: A Better Perspective

In a recent blog on Harvard Business Review, a blogger astutely observes:
"Happy" people are some of the dullest people I know. And yet happiness is the state to which so many of us doggedly aspire.
I have often talked (both here on the blog and within in-person conversations) about enjoying the "Happy Josh" and enjoying when Josh is in his "happy place." While maybe aspirational, how limiting.

What makes Josh a beautiful human being is *all* the emotions he exhibits, even when happiness isn't anywhere within his grasp. A while ago, when asked what attracted me most to Josh (enough to marry and stay married for 17 years), my reply was that Josh loves me for who I am, not who he wants me to be. He accepts all the crazy emotions, obstinance on certain topics, irrational arguments, overly cheery demeanor in attempts to bring everyone in the household up, slave driver tendencies...I could go on and on, but I'll spare you.

Josh has good reasons to not be happy right now. He's hurting most of the time unless he's taken enough pain medications to dull the aches. He's tired because he doesn't sleep well. He worries about why the pain is back after the "reprieve" during chemotherapy. The neuropathy in his hands and feet seems to be getting worse. Radiation has only slightly lessened the pain in his lower back and somehow just a few minutes under the beams doesn't seem at all adequate. Time without a visit to MD Anderson feels strange (the next trip isn't until November) and somehow out-of-routine.

But despite all this, he gets excited about working on the conversion of our back patio into dining room, pauses a TV show to really look at the nice living room and cabinets to gather ideas for that next project, and details out all the mistakes made in the construction of any cabinet. He challenges others with good questions and his own ponderings about the meaning of life. He throws the football with his son. He goes faithfully to his daughter's every soccer game and even helps out at practices more often than he really feels like doing. He smiles at and with me, encourages me.

I was talking with Josh this week and let him know that I wished I could switch places with him. For two reasons, really. One to take away the pain from him and bear it myself instead. Two to see how I would handle the situation as the fighter not the cheerer.

We're still on the long journey, the marathon with no known finish line. The quote from a Vietnam POW included in the aforementioned blog post provides great perspective: "You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be."

Tuesday, September 28, 2010

You've got to love morphine

Thanks to the proper dosage of pain meds I have been able to find, as Anna calls it, my happy place. Unfortunately, I had to bump it up to some of the big boys. But between the morphine and the Celebrex, I am now for the most part pain-free. And that allows me to be happy.

I finished my sixth session of radiation today and the doc seems to think that the relief should start coming anywhere from the seventh to the tenth round. I just hope it comes. I haven't had any side effects as of yet and that is good. I will start trying to wean myself off the pain meds to test the waters sometime between the 8th and 10th session.

Not much else to report. I don't have another appointment down at MD Anderson until November 10th and that allows for an uninterrupted string of weeks at home. Feels kind of weird. Not complaining though. Hopefully the tumors are behaving themselves and that will lead to many more weeks at home.

Thursday, September 23, 2010

Happy place

I asked Josh last night where his smile went and what it would take to bring it back. His answer, "I don't know." When I ask, rather often and hoping for a positive answer, how his day is going or how he's feeling or how he slept, his common answer is a monotone "OK" or that sound you make when you put your hand out, palm down and shake it a bit...something like "eeh."

I feel like the wife on City Slickers (we haven't had a movie reference here in a while so thought I'd include one).
Barbara: Go and find your smile. (she says to Billy Crystal's character, her husband Mitch)
Mitch: What if I can't?
Barbara: We'll jump off that bridge when we come to it.
Unlike Mitch, Josh doesn't think an adventure involving horses and cows would bring his smile back. I thought maybe the trip to Michigan we just returned from would put a smile on Josh's face that lasted more than just a day. We not only got seats 15 rows up on the 20 yard line behind the Michigan bench for the football game on Saturday, but also got a behind-the-scenes tour of Crisler Arena (and got to meet Coach Beilein, the basketball coach) and The Big House (including the $85K/year, 3-year commitment new luxury suites) AND got to spend 20 minutes playing on the field, kicking field goals, punting, throwing, running the length of the field, doing handstands on the big "M" in the middle, etc.

Here's proof:


(Josh's mom and my folks all partook in the whirlwind weekend as well.)

But alas. Throughout the game, Josh rarely smiled, did little cheering, and spent much of the time standing near the concessions since his son couldn't see well and had decided it was better to watch the game via the TVs up in the concessions area. The night before spent "sleeping" on an air mattress instead of a bed did nothing good for his back pain, so he spent the majority of Saturday feeling really lousy. Our two days (one up and one back) driving 17-20 hours through the night I'm sure didn't help either, even though we split up the driving fairly evenly (at least on the way home). Sleeping in a minivan is not ideal for almost anyone (the kids did amazingly sleep soundly).

I miss the "happy Josh." I see glimpses of that side of him occasionally and celebrate those times, doing what I can to extend that moment of life, however brief. In the meantime, I resist the natural urge to follow him down and instead continue to cheer-lead, smile, cajole, hug, comfort. I wish I could do more to help.

Pain, pain go away!

I guess that super-hero Halloween costume I have been designing will have to be put on the back burner for now. The ability to fly, climb walls, or shoot lasers from my eyes due to the radiation that I have been submitting myself to just has not materialized. In fact, it hasn’t even lessened the pain in my lower back.

After three treatments, the pain is just as prevalent as before. I have grown weary of the chronic pain that starts in my lower back and shoots down the leg of its choice. I tire at the ache that I feel in my right shoulder. The numbness in the front half of both my feet because of the chemo-induced neuropathy is just plain old. Because my children sometimes read this blog, I will Disney-ify my pain rant language. Chronic pain sucks!!

It really affects my work productivity. I don’t sleep as well. And, as Anna will testify to, it really affects my mood. I was hoping for some quick relief from the radiation sessions, but I guess I may have set my hopes too high. Now my thoughts shift to the more drastic: will it work at all? Because this is a one shot deal. Due to the toxicity I can’t have this procedure done again down the road. This is our one shot at eliminating the cancer in the back and returning me to feeling once again like a 39 year old should feel.

I shudder to think that if it doesn’t work that I am condemned to live out my natural life with this back pain. Or the alternative of upping the pain meds until my liver or my stomach give out.

But I tell myself, "Just chill." I am not even one third of the way through the treatment yet. Give it time. Let the photon beams do their job. I was just so wanting there to be some progress by now.

Tuesday, September 21, 2010

Diary of a superhero wannabe

1 pm, September 21, 2010

Subject myself to two six-million volt photon beams of radiation. One through stomach and another through the back. Hope to induce superhuman characteristics similar to Spiderman or Superman. At a minimum, hope to eliminate the pain in the L5 vertebrae of my lower back by killing the cancer present there.


1:30 pm, September 21, 2010

Feel normal. Attempts to climb walls or jump over our house fail. Enter dark closet to see if I glow. Also fails. Maybe it just takes a little more time to kick in. Will schedule fourteen more rounds of radiation at Texas Oncology to see if I can't hasten along the development of superhero powers.


1:45 pm, September 21, 2010

Do notice a slight lessoning of pain in my lower back. In the words of Shrek: "That'll do, Donkey. That'll do."

Friday, September 10, 2010

Update

I finished my last battery of tests from MD Anderson and here are the results.

  • Tonsils. Tested negative in both for cancer. YEA! (but kind of already suspected it so not surprised)
  • Head MRI. Turns out I have a brain and, better yet, it seems to be okay. No evidence of disease. YEA!
  • Chest CT scan. Primary tumor is stable. One mass grew a tiny bit and the other shrank a tiny bit. YEA!
  • Back MRI. They did find a slightly larger metastatic mass there on the L5 vertebrae. This is what is causing my back pain. BOO!
Plan of action is to attack it with some radiation. Doc wants to do 10 days of radiation in a row but each session only lasts about 15 minutes. I now have to decide if I want to live in Houston for 2 weeks or if I should just get it done up here. Easier to get it done up here but probably trust MD Anderson a little more to do it right. Decisions, decisions....

Tuesday, September 7, 2010

Another Trip to MD Anderson

Today is Tuesday and this evening I will once again hop on I-45 heading south. I think I will start lobbying for a high speed rail to be constructed between Dallas and Houston. On my plate for tomorrow I have a full day of tests along with a side or two of waiting around. Two MRIs, a CT scan, and a chest X-Ray to look at my insides again to either confirm or deny what I feel is going on inside me. I will end the day with another round of accupuncture. Thursday is the appointment with two docs to read the results of the tests. Hopefully, Thursday is a good day.

Thursday, September 2, 2010

Not Just Yet

I get asked quite often how I am doing. Seems like an appropriate question to somebody in my condition. Most of the time my response is a simple, “Fine,” or “Alright.” I have never been one to up and spill my troubles so casually. I’ll give status reports and summaries of doctor’s appointments, and sure, if pressed, I will probably go a little deeper. But to tell you truly how I am feeling would take a Herculean effort to get it out of me.


I am afraid. I am truly and deeply scared. I am afraid I am going to leave my wife without a husband, my kids without their father. I am afraid that I won’t be able to hug and kiss them and gaze into their beautiful faces. I am afraid that there is going to be so much life left to live by my loved ones and that I will never get to be a part of. I am afraid that the pain my body is feeling indicates that the tumors are growing. I am afraid that this cancer is going to overcome this body no matter how hard I fight it. I am afraid of the pain and suffering of loved ones caused by my death.

I accept that I will die someday. Just not so soon. Please, not just yet.

Wednesday, September 1, 2010

Thanks to the family up north

Want to say a quick thanks to the whole Van Sligtenhorst clan that reside up north. Our family had a great vacation up there and a wonderful family reunion. In fact, my kids are already trying to make plans to come up again next year. It was great to reacquaint with some and put faces to others that I had only met on Facebook. I also especially want to thank you all for your prayers and support during these trying times. It has been difficult at times and it is very comforting to think about all the people I have in my corner. With time and distance it is easy to become disconnected. This may sound weird but I know that even though we are family, you treated us like family. Not some blood relations that you haven’t seen for 20 years and live way far away. You welcomed me and my family back with open arms and love. Thank you.

All are welcome to come to Texas whenever you like. I would recommend you avoid the summer months. If you thought it was warm during the reunion, you would melt in Texas in August. Oh, and for those I talked about the rest of our vacation in Niagara Falls, you were right. The Canadian side of the falls is better.

Sunday, August 29, 2010

Anger

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

Homecoming

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.

Thursday, July 22, 2010

Next up: more scans

Josh's next step is another round of scans and a doctor's appointment to hear about what the docs see. We expect to hear that things are looking even better after the 6th and final round and we don't need to be at MD Anderson again until early October for the first of the every-two-month cadence of scans.

August 3rd: Chest, PA, Lat and CT scan of head/neck
August 4th: CT scan of chest, abdomen and pelvis
August 5th: Meet with the doctor

I'm sure we'll fit in acupuncture and massage in there and maybe another integrative medicine class. Maybe Laughter Yoga. :-)

The IVs are daunting to him even though they're not the chemo. He's tired of being stuck. And he's saying that he'll need hypnotism or something equally drastic to get through another round of chemo if things come to that. But let's hope that it doesn't come to that!

Exercising the mind

Josh is continuing to get better and better, stronger and stronger, but still isn't 100% himself yet. The annoying coating on the tongue still plagues him, making things taste funny. But he continues to eat well and worked out at the gym this morning. And emotions are still closer to the surface than usual.

Last week my sister, a busy mother of two young kids who's a middle school science teacher and team lead in St. Louis, took a few days to come visit us sans her family. It was her first time to see the house we've lived in for nearly 10 years...so it was a special treat. Thanks for making the time, sis!

She and Josh and to some degree the kids spent some time together while I was at work, but we spent the evenings hanging out and talking. I also took an extra long lunch break to meet my sis and Josh down at the West End for lunch and then a visit to the Bodies exhibit (without Josh since he'd been able to see it with a couple of friends a few months back). At the end of the tour through the amazing exhibit (I highly recommend it), my sister bought a book on Neurobics - ways to exercise the mind in creative ways. It'll get passed on to my folks when they come into town this weekend...they're big on ways to remain sharp after retirement.

From the book's suggestions, I've tried showering with my eyes closed and driving a different way to work. Next up: maneuvering to my car in the morning for my regular commute with my eyes closed. I just need to be careful to not spill my smoothie ibn the process (like I did on our sitting room carpet before church one Sunday)!

And while my sister was here, she helped me make progress on an eye-bending jigsaw puzzle for more "neurobics" (I love jigsaw puzzles, but Josh is not at all a fan but tolerates the card table taking up some of the TV room space occasionally). Here's the puzzle finally complete:



Look at all those annoyingly similar pieces:

Tuesday, July 20, 2010

Happy Birthday, Josh!

Josh, in the midst of the recovery period after his last chemo round, celebrated his 39th birthday today. Not exactly the way he would have prefered to celebrate, but it is what it is. The celebration is delayed until this weekend when my folks are here, Kate is back from Houston and hopefully some portion of Josh's family is here as well. And then we'll probably celebrate again in Houston when Josh goes down on August 5th for scans. We have to make up for the delay in celebration, of course.

Josh started this morning with a walk twice around the block and finished the evening with a single lap right before bed. His strength is slowly coming back, but his head is still a bit fuzzy and he's grouchy (typical to the other rounds). He did take Ethan to the dollar movie (well, 75 cent Tuesday) this afternoon, but that was really the extent of the fun.

Josh, may all your many upcoming birthdays find you healthy, wealthy and wise!

Sunday, July 18, 2010

Still Fighting

When you're 38 years old and you hear from your doctor that you have stage 4 cancer and the prognosis that comes long with that news it really sends your world spinning. Emotions run wild, everything from anger to utter sadness flood your world. I must admit, though, that as time has passed I have become more detached from those emotions. They say time heals all wounds and the six sessions of chemo with 3 weeks in between each session seemed to be doing the same for me. The thoughts of my own mortality seemed to fade, diluted to a faint memory. My mind changed gears back over to thoughts of work and household projects that I wanted to complete. I guess though that I didn't realize all those emotions were in fact not gone but just hidden below the surface.

Because of our schedule we hopped in the car at 4 am on Thursday morning in order to get my visiting sister-in-law down to Love Field for her flight out and to get me down to MD Anderson in time for my first appointment. A little later in the drive with me at the wheel and the rest of my family catching some more zzz's this song by Alan Jackson comes on my iPod. It is a song about a life cut short and I just lose it. Tears start streaming down my face. I guess those emotions are still there and very real.

Why did she have to go
So young I just don't know why
Things happen half the time
Without reason without rhyme
Lovely, sweet young woman
Daughter, wife and mother
Makes no sense to me
I just have to believe

She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me

Loved ones she left behind
Just trying to survive
And understand the why
Feeling so lost inside
Anger shot straight at God
Then asking for His love
Empty with disbelief
Just hoping that maybe

She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me

It's hard to say goodbye
Her picture in my mind
Will always be of times I'll cherish
And I won't cry 'cause

She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Don't worry 'bout me
Don`t worry 'bout me


It reminds me that I am still fighting for my life and how scary that is. Something that I seemed to forget a little bit over these past several weeks.

Friday, July 16, 2010

Live blogging: Chemo day + 1

7:17am: I try to sneak out of the hotel room to go work in the lobby somewhere, but Josh says that he's ready to get up. I go downstairs and get two breakfasts to go; Josh asks for eggs, sausage and orange juice. The hotel caters well to the MD Anderson crowd with special rates, free shuttles to and from any location nearby, and an understanding food serving staff who regularly accommodates folks who aren't well enough to sit at a table and eat. When I arrive back in the room with the breakfast tray, Josh is watching HGTV. He eats up the eggs, most of the sausage and only some of the juice (Gatorade is working much better for hydration). He makes comments throughout the HGTV shows (as always), either agreeing with the choices or expressing his disdain for bad choices.

9:30am: Josh is driven to work since he's on a tight schedule to complete a few projects in the next week or so. He sits up in bed with his laptop on his knees and works to finalize a design on Microvellum. He looks good, but his skin is warm to the touch, he occasionally feels nauseous, and has over-productive salivary glands.

10:13am: Josh eats the biscuit and honey that I brought him as an extra from breakfast. He's not really interested in working, but is pushing himself to complete the design so he can send it over to the cut-out shop for finalization. I suggest some more HGTV, but he says it's boring and repetitive. He continues to work (as do I). We have late check-out so we don't have to leave until 2pm when we head over to his acupuncture appointment.

10:27am: Josh closes his laptop after sending off the final design. Off goes the lights for a mid-morning nap.

12:57pm: Josh wakes up groggily and requests some lunch. I take a trip to a nearby Kroger and pick him up some fruit, a chicken pot pie and a Gatorade (which is tasting much better to him than water right now). He's not particularly hungry and says that his stomach feels so weird that he's not sure whether to add food to it or not. He gets at least some of it down.

2:00pm: We check out of the hotel and I drop Josh off for his acupuncture appointment at the Place of Wellness at MD Anderson (who provide all sorts of integrative medicine options for patients and family members). I have to go pick up Josh's pillow which we forgot in the treatment room last night and also go by the pharmacy there in the hospital to pick up his Emend prescription (which is supposed to help with the nausea). Then I realize that I forgot two of Josh's Gatorades back in the hotel room's refrigerator so I trek back there before coming back to pick Josh up.

4:00pm: Josh's acupuncture took a bit longer today so we're finally on the road back up to his folks' farm to pick up Ethan and then head to Dallas. Traffic is awful. It's start and stop quite a ways up I45, so Josh isn't comfortable lying down in the back of the van in the bed I've made him again (he'll get too nauseous - as if my driving wasn't enough to cause that).

5:28pm: We're on the road to Dallas after a very brief "hello, how are you?" with Josh's family. Kate is staying for a week with Grammy and Papa (she absolutely loves the time) so it's just the three of us. Ethan and I talk quietly in the front seats while Josh lies down on the couch cushions in the back. I think he's sleeping because it's so quiet, but occasionally he'll comment on something that Ethan and I are talking about.

7:01pm: We stop to get Ethan some dinner (I'm not hungry, nor is Josh, really). Josh does take a bite of Ethan's sandwich, but that's all he wants - a bite. He sleeps the majority of the ride back home, as does Ethan, who seems particularly tired.

9:43pm: We arrive back and home and the boys immediately head to bed. I have an indoor soccer game to play at 10:24pm tonight, so I quickly get dressed and head out in the van again.

11:54pm: Long day. Long two days, actually. I reflect on my way home from the soccer game that we left our house just yesterday (albeit at 4:00am). It seems like MUCH longer than that. I'm glad tomorrow is Saturday.

Thursday, July 15, 2010

Last one

Josh has just survived the somewhat easier part of the last of six chemo rounds (the actual administration of the "healing juice" into his system) and is in the very start of the recovery period. We're mixing things up a little bit this time and instead of driving home in the middle of the night, are staying the night down at a hotel nearby MD Anderson so that Josh can go to an acupuncture session Friday afternoon before we head back to Dallas. He opted for a massage this morning before chemo rather than acupuncture. He loves massages, so it was a real treat (although, according to him, it didn't last long enough).

The doctor appointment today was short and sweet - the doctor says that the scans are showing tremendous reaction to the chemotherapy, better than he's seen in a very long time (I resisted the urge to press to have him quantify that more precisely). The primary tumors in the chest are significantly reduced in size and are showing significantly reduced activity. They're not seeing anything now in the liver and the bones all show healing. As an added bonus, he's topped just over 200 pounds for the first time ever in his life - so he's at a very healthy weight even with feeling lousy every three weeks.

The nurse helping him tonight gave him a hearty "congratulations" (saying that she thinks they should do something more for those who are undergoing their final treatment, but figures most patients are not quite up to it right then). And Josh's brother replied with "I hope we never have to see you again!" Nothing personal, of course.

So now we come back again in 3 weeks for another round of scans and a meeting with the doctor. Likely Josh gets a break (other than the bone drug Zometa every 4 weeks) until early October when he'll come back down for more scans. If no negative activity, he'll go another 2 months until another set of scans and so on. If at any time Josh starts feeling bone pain (or anything else out of the ordinary) or they see something appear on the scans, they'll figure out what the next course of treatment is from there. It's likely he'd be a part of a clinical trial - there are a few that should be good options if we ever get to that point.

Cancer has forever changed our lives, but with this last chemo we'll now adapt to a new routine, hopefully one that sees clean scans every two months for a long, long time.

Tuesday, July 13, 2010

Emotions right under the surface

Ever since I first heard that Josh has cancer and each time I stop to really digest that fact, it reminds me of how close a wide range of emotions are to the surface for me and for Josh and for the kids as well. Particularly during the days that Josh is back to his normal self (and just seems to perfectly healthy) in between rounds, we forget the battle going on within. Well...nearly.

During our experience at the North Texas Food Bank, we were working side by side with a man who became quite talkative (once we got over the initial "it's not a race" conversation after he snapped at me to hurry up with stacking food he could use to fill boxes to the prescribed weight). We learned a lot about him, his family, his work and his hobbies...and I mean a lot.

Then we got into a conversation about how acidic tomato products are and what they can do to metal in a short period of time (since we were surrounded by cans that had been dented, some to the point of metal touching metal - which we were instructed to throw out). We shared our new knowledge about how cans are lined with BPA-based plastic that leeches into the food and can cause cancer. He quickly said something to the effect that he hadn't heard that and doesn't believe it. Josh's comeback was that he was recently diagnosed with cancer and is doing a lot of reading up on potential causes of cancer and how to eat more healthily to reduce your risks and improve your chances if you've already been diagnosed.

That threw the guy for a loop and he said "I'm sorry to hear that" and immediately asked for more details around the diagnosis, prognosis, etc. Talking about such things with a nearly complete stranger is an odd thing, but still the speaking of the facts shocks you into thinking about the reality of it all.

That same evening, we went to a previously-scheduled family therapy session. While I can rationally acknowledge that the cancer has affected us, I didn't see the depth of that effect until that evening. We started the session with a few exercises: one in which we had to draw a picture together with talking and the second in which we had to draw a picture together while talking.

Then we spent a bit of time talking as a family with the counselor about that experience and what it indicates: the tensions between the kids, the tensions between parents and each child, etc. Then the kids were dismissed to the lobby while the counselor talked to just Josh and me. Just a few words had both Josh and me in tears: "Your whole family is hurting." The kids, while sometimes seeming oblivious to the whole cancer ordeal, are all too aware of the situation and are very worried...about losing their dad. That worry manifests in different ways in each of us, but in some ways the same in all of us.

After the therapy session, we went out to dinner and had one of the best out-to-eat experiences we've had together as a family, talking and laughing, just enjoying the time together. We've also re-instituted one-on-one time with child+parent and parent date nights to make a deliberate effort to slow down and spend enjoyable, quality time together. And we'll keep talking together and one-on-one to ensure that the worries are vocalized and we're dealing with the emotions running right under the surface in a constructive, beneficial way.

Friday, July 9, 2010

Helping the food insecure

Yesterday provided the Van Sligtenhorst family an opportunity to help, via the North Texas Food Bank, those people in our community who are food insecure (don't know where their next meal is coming from). My company provides me 24 hours of community service paid time off and since the kids are out of school and Josh is feeling good, we spend the day working together.

A few things we learned:
1 - Texas is ranked #1 of all states in food-insecure children
2 - Texas is ranked #2 of all states in food-insecure people (all ages)
3 - Texas has moved up in these rankings during the last two years
4 - Only 9% of the people that North Texas Food Bank supports are homeless. The remainder are people like you and me who, when they suddenly get sick or lose their job, are unable to provide a constant source of food for their families.
5 - We shouldn't work a full day after staying up way too late the night before. Our exchange student, Julia, and her family left yesterday morning so we stayed up late chatting and ensuring she was fully packed. She and Kate were up until 4:30am or so with shenanigans as a last hurrah. We miss her.



We spent the morning shift working the line in which boxes of salvaged and donated food are manually sorted into bins according to six categories (grains, breakfast, fruits, vegetables, proteins and miscellaneous). Kate's job (with my assistance) was to collect the emptied boxes, put them into the right configuration and then stack them on pallets (with Josh's help). Ethan's job was to empty the boxes on to a table for someone to check and put in the right bin. 2 full hours of nearly non-stop work.



We moved over to help out on the "senior line" for ~30 minutes before our lunch break, adding non-salvaged food items to boxes in assembly-line fashion. The majority of the others working that line were mentally disabled adults who come to volunteer often. Fabulous to see their involvement.

Since we worked both shifts, we came back early enough to help those who are full-time volunteers and are responsible for preparing and overseeing all the volunteer groups that come to serve. We jumped in and set up the senior line for the next round, creating a huge pile of boxes from new flattened boxes and tape wands, laying out the rolling table for the line and opening the food boxes to ensure easy access to the food items.

Then we were assigned to work on the food boxing line for the afternoon. Our job was to weigh completed boxes (pulled from the six bins we had helped create in the morning) and add miscellaneous items until they were around 31 pounds. I believe we completed 4 pallets of 36 boxes each in the 2+ hours we worked.

It's great to spend time helping the community as a family!

Wednesday, June 30, 2010

Round 5 Day 6

Still not out of the weeds yet. Not sure why this recovery is taking longer or that it seems to be worse than the others.

When our kids were very young we decided to take family vacations every year to a different state in the US. At first the vacations revolved around what the kids were interested in at the time. For example, a trip to Pennsylvania to see an actual working Thomas the Tank Engine steam locomotive. Or a trip up to Washington state to go on a whale watching expedition when whales were all the rage with my son. Sometimes we drive, others we fly. Over the past few years as the kids have gotten older it has evolved into each family member taking a turn picking our next destination. When my daughter did a poster project for school a couple of years back we discovered they had been to 17 states by that time. There is an ongoing dispute between my wife and I about what constitutes actually visiting a state in order to cross it off the list. Doing a couple of touristy things while traveling through the state in order to get to another does not, in my opinion, qualify as being worthy of crossing the state of the list. Either way, pretty darn good considering many of the kids' friends have never even been out of Texas.

Anyway, we have thoroughly enjoyed our family vacations and I hope they have formed as many fond memories for my kids as they have for me. However, as of late my desire to travel has taken on a slightly different angle. Now I want to travel outside the United States. I have come to the realization that the world is simply too big and too exciting to limit myself to only experiencing our own great country. Perhaps it was the influence of hosting a German foreign exchange student this past year, or perhaps it is the whole noma thing that has caused me to broaden my horizons. I don't know. I just feel this urge to see the rolling hills of Scotland or the Coliseum in Italy. There is just so much to see.

We recently got our passports so that we can attend a family reunion in Canada this summer. While yes, this is international travel, I was hoping for something a little more grand. I guess it is a good first step, though. We still have many wonderful areas of this great country, but I hope we get to leave the North American continent sometime in the near future.

Monday, June 28, 2010

Free Blogging

This is my fifth round of chemo out of six, and you would think by now I would be used to the side effects. They came and went the last four times. Surely, it is within my current state to understand that this is just temporary and the clouds will clear. But alas, I still find myself wondering yet again just when will these ailments pass. Don't know why I can't view this recovery time any differently. I can count the days until they should clear, but it seems to offer little relief. I guess the drugs are just too powerful. Maybe I should paint something so I can watch the paint dry.

I just went back and read an older post describing the symptoms after treatment and I apologize if I sound redundant. Maybe the chemo erases a little bit of my memory every time and I forget that I have already described this scenario.

I just pulled some handwritten cards from my family that they gave me for Father's Day and re-read them. They made me tear up again just as they did the first time I read them. I am so blessed! I love my wife and kids so much! Their words help to give me courage to pick up the fight once again, especially now when my resolve seems so thin.

My daughter is enjoying being an only child for a bit. My son is spending his annual summer week+ down in Houston with the grandparents. Wish I felt a little better so that I could do more things with her right now. We have some plans to go look at home builder's model homes as soon as I am able to drive again. We used to do that more frequently when there was so much new development around us. She loves to do that with me. I am going to try and take her to the pool later this afternoon. Need to get some sun on these old bones anyway.

Have work to do and a couple of house projects I would love to get my hands on, but just don't have it in me yet. Probably shouldn't be messing around with electricity in my current state anyway. Couple of more days...

Sunday, June 27, 2010

Day 3

Have the tingling feeling in my fingertips.
Can't stand or walk for extended periods of time.
Mild case of the "chemo-head" but still enough to make it hard to concentrate on anything in particular.
Low tolerance for the heat- makes it real hard to do anything outside right now.
Usual abdomen cramps.



I'm sittin' on the dock of the bay
Watching the tide roll away
Ooo, I'm just sittin' on the dock of the bay
Wastin' time

Saturday, June 26, 2010

Uno mas

Number five is done. One more round to go. I can finally see the light at the end of the tunnel and it is starting to feel good. My resolve was challenged after round four, but I can see the finish line and I am going to make it!!

As you can tell from Anna's post, not really sure what to get out of the last round of scans. Would have helped greatly to have my doc there to give us the update. Don't know if some of the growths were never there to begin with (which I doubt) or if the chemo has destroyed them (which I hope). All in all I walked away from that appointment with many unanswered questions which is very frustrating. I may try to call my regular doc sometime soon to see if I can get some more answers from him.

Not much really else to report right now. Recovery is proceeding similar to past episodes. Thanks again for all the thoughts and prayers.

Friday, June 25, 2010

Oft-tread paths

Each night for the last three nights, I've been on the road to and/or from Houston. On Tuesday night, Josh drove he and I halfway down to Houston where we met Isaac in Buffalo. Josh moved over to Isaac's car and I drove the van back home to Dallas (me arriving back home at 11pm and Josh and Isaac arriving at their folks' farm at about the same time). Josh spent a nice day on Wednesday with his mom and brother as he got blood work and scans done as part of the prep for the 5th round of chemo.

On Wednesday evening, after a full day at work, I drove the kids down to Houston. To enable Josh to sleep as much as possible on the drive back up, I created a bed in the back of the van from his beloved couch cushions (he spent many a night on those when he was in so much pain prior to treatment).


We arrived at the farm shortly after 11pm and quickly crashed along with Josh, Josh's mom and cousin Llew in preparation for a Thursday trek down to MD Anderson for a doctor's appointment and chemo.

We arrived at MD Anderson right around 9am, just in time for the appointment, but ended up spending time together in a small room waiting until nearly 11am. It was a study in patience for the kids who are accustomed to being able to entertain themselves with electronics or a rambunctiousness that wasn't allowed in that small room. Ethan did spend some time trying to figure out how to turn on the x-ray viewing machine and finally did with some help from his doctor-in-training uncle. Kate and Llew enjoyed pulling open and closed the curtain that circled the door.

The replacement doctor (our regular doctor is on vacation this week) was less than helpful - it was abundantly clear that he didn't read Josh's chart before he walked into the room. He stuttered through saying that Josh was cleared to go for the next round (after handing us a copy of the preliminary scan report) and then ended up coming back a bit later to clear up some comments he had made about "a healing hip fracture" (that is really signs that the mets in his hip are healing). Until we're able to talk with his doctor, either on the phone in the next couple of week or not until round 6 in three weeks, we're not sure on the details. But what seems to be the case is:
1 - No sign of any cancer in the liver (which the PET scan in Dallas had shown as "lit up," meaning it had some level of cancer effects)
2 - No sign of mets in the ribs (which also had previously "lit up")
3 - Signs of healing in the bones
4 - Continued reduction in the size of the primary tumors in the chest (the largest of which is now like 2.6cm x 3cm)

Chemo was delayed because of a partial order. We wait...


With Josh's birthday in July, he's a Cancer so I thought this flier was apropos.


Finally Josh is hooked up to the chemo drip at around 1:20pm. We get a visit by the assistant nurse manager with all 7 of us in Josh's treatment room at first, letting us know that only one person is allowed. She also confirms that Katelyn is indeed 12 since that's the age requirement for entry. We assure her, but get a couple more stares by nurses walking by in the hallway. After the kids get a chance to try out the bed, push the buttons, turn on the TV, etc., Grammy takes them back to the farm.


The remainder of the evening, Isaac and I watch videos with Josh, take turns wandering the hospital trying to get connected to the wi-fi, eating dinner, etc. By 8:30pm, Josh is done and we're on the road back to the farm to drop Isaac off and pick up Kate to head to Dallas (Ethan is staying with Grammy and Papa for a week).

2am this morning I pull up at home and we crash. Josh looks good this morning, eats a bit and was watching the World Cup as I went off to work. With acupuncture and a positive mindset given that he only has one more round to go through, we're hoping the recovery time this time is quicker than the last. But it's a path that Josh still has to tread...all for the healing.

Wednesday, June 16, 2010

Quick update

I think I may have scared everybody off with that last post. Noticed that nobody wanted to comment on that one. I just wanted to reassure everybody that I am fine. I haven't gone off the deep end...yet.

I have been feeling good the past couple of days: working out pretty hard every morning and getting some actual work done during the day. Ethan with his World Cup watching is a bit of distraction and I find myself being sucked into watching a little too often. My patience still isn't what it used to be, especially with the kids home for the summer and their constant "I'm bored" chant. But I think that would wear on even the most patient of parents.

Round 5 is coming up next week. I will head down to Houston either late Tuesday night or really early on Wednesday morning. I have scans again on Wednesday and then the Wonder Juice will be administered on Thursday. They originally had me set to start at 6 pm with the whole process lasting 7 hours. Fortunately, I was able to convince them to change that because I personally don't like leaving Houston at 1 am (or later) to head back home. Don't know how much I will learn from the scans this time because my doc is on vacation and I will be meeting with a different doc in his absence.

Here's to more shrinkage!!!

Wednesday, June 9, 2010

What is normal?

My wife comes home every day from work and asks how I am doing. When my response isn't what she thought it would be, she states something like, "But last time this and this happened by so and so."

The one thing that I have learned from my post-noma life is that there is no normal anymore. For a large part I don't feel like I am in control of much anymore. Work is different. Relationships are different. The noma has hijacked my life and I am just a spectator watching from the sidelines as, what used to be my life, passes by. It is probably as close to an out-of-body experience that I have come. I feel a strange disconnect with all that used to be normal in my life. Maybe this is my rabbit hole. My children are there in front of me and I know that I love them, but still feel distant from them. As a matter of fact, I feel more of a connection with the images I see in old photographs of them than I do with the present day flesh and blood that I am interacting with. It is almost as if the "healing medicine" coursing through me has messed with my wires and the way I function on a basic level.

I am hoping this is all just a bit of the fog lingering, but I can't help but feel that it has slowly building since the first round. I feel that I am slowly losing myself. With each round the wave comes a little farther up leaving a little more oily residue behind and a little less pristine beach. Just hope it isn't permanent and that my wiring will sort itself out with sufficient time after the last round.

The days are long but the years are short

Speaking of time creeping or speeding...it's all about perspective.

After 10 months and a whirlwind 3 days, our German "daughter" and "sister" is off on a big driving trip of the western United States with her parents, her aunt and uncle and her cousin who flew in from Germany. Our house is immediately different and Josh's comment this morning was "it's really going to be different without Julia here." We're missing her already, especially Kate who took the opportunity to open her room to Julia so that they could talk late into the night (and eventually sleep) last night.

Julia was initially supposed to fly home to Germany tomorrow, but found out a couple of weeks ago that her family wanted to take this opportunity to see the U.S. for the first time while they had Translator Julia already available here. Her aunt, uncle and cousin arrived first on Sunday night and we made sure that they were able to rent a car with no problems. They speak a mixture of Polish and German, but Julia spoke to them primarily in German, which I was able to understand with my 4-years of German language study back in high school. I didn't try too much speaking for fear of sounding very silly.

Julia was gone for the majority of Monday and Tuesday until her parents flew in on Tuesday afternoon and they came over to say hi and spend the night last night. Julia's head was clearly spinning with the work of translating all our conversations. That and the fact that she's adjusting to seeing her family and talking in German again - she hesitated more than once over the last several days to try to come up with the right word in German.

It was wonderful to have an international breakfast at our table this morning (although we had a decidedly American breakfast with sausage, bacon, waffles, and fruit smoothies). The sound of the different languages at the table highlights how big the world is. Josh said that after this experience he's more interested now than ever before to travel internationally. We hope to go to Germany next summer to catch some of the women's World Cup (Julia's family is just minutes away from one of the main stadiums).

We look forward to seeing Julia again briefly when they're back from their tour of Colorado, Utah, Nevada, California and Arizona at the end of June. Our final goodbyes will be in early July when Julia will have to go through another adjustment: being home. Despite the extra craziness of our lives this year, hosting an exchange student has been a wonderful experience. I'd recommend it to anyone.