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 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!