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.

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...

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

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.

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.

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!!!

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.

Time creeps by

For me, with the demands of work, kids, required house duties, sleep, exercise and the like, time speeds by. I've been heads-down at work lately and only occasionally break to look at the clock on my computer, oftentimes noticing that it's way past time to go home. Dinners are later than usual since everyone has to wait for me to get home and get cooking, so there's never much time between cleanup of the dishes and kitchen to the cleanup of the kids and me in preparation for some sleep.

But for Josh, these several days after treatment, time creeps by. At this, the fifth day after his fourth round, he is able to focus more, but still is very weak and generally not feeling well. He has spent the majority of the last few days alternating between lying in bed and lying on a couch. Last night when I came home from work, I laid down next to him to touch base. His response to my asking what I can do for him, he said, "Can you make time speed up?"

How nice it could be to have a remote control for life like in the Adam Sandler movie, Click, where a fast-forward button gets us through the rough (or just annoying) times of life. Or do so for a loved one struggling.

But part of the beauty of life is that it does include all this creeping of time. The moments where you're relegated to the bed or couch where all you can do is watch and listen as life goes on in front of you. An observer, not a participant.

Soon Josh will be back to his generally happy self: the one who hugs instead of retreats; the one who smiles instead of sighs. He's not the only one looking forward to when he'll come out of this chemo fog and ultimately his sixth and final chemo fog, hopefully in plenty of time to celebrate his 39th birthday on July 20th with flair.

A full day - revised

OK, the full day didn't go as expected. The revised day:
1 - Blood work at 11:15am.
2 - Steak lunch as expected. Josh refers to these as his "last supper" each time since he has no appetite once he's in the treatment room.
3 - Doctor appointment at 2pm, but sit in the appointment room for 2 hours before the doctor completes a quick look-over and pronounces Josh ready for the next round.
4 - Additional wait at the treatment center since they have to wait for the doctor's staff to give the go-ahead on the prescription of the chemo. Chemo finally starts around 7:15pm.
5 - Josh's brother graciously offers to drive Josh ALL the way home from the hospital after the treatment so that I don't have to get up early in the morning to meet them halfway. Since I was up since 3am that morning, I took him up on the offer. They're not home until 7:30pm the next morning. Josh's brother is so wired that he has a quick breakfast and hops back in the car to drive back to Houston.

Long day.

And now it's the 3rd day after the "healing medicine" and Josh is doing pretty well. He's been in bed much more this time, but his head is clear so he's able to focus on work, movies, reading. He's weaker and dizzier than usual and his stomach is giving him trouble. But this evening, he walked well around the block, ate quite a bit for dinner (corn on the cob is tasting particularly good to him, as is watermelon), and watched the remainder of the Boston/Lakers game even though he doesn't care at all which wins.

Fourth round almost done.

A full day

Today at 6am, a friend of ours (thanks so much!) left our house with Josh to drive him half way to Houston at the same time that Josh's brother left his house in Houston to meet them. My plane from Toronto (after a two-day trip for work) landed just after 9:00am this morning. By the time I was on the highway heading back to work for the day and was able to call Josh, he and his brother were already in the north Houston area, preparing to stop for a small bite to eat.

Josh's day looks to be:
1 - Blood work at noon (or shortly before)
2 - Big steak lunch out at a restaurant with his brother since he won't be trying to eat dinner like he has in the past
3 - Doctor's appointment at 2pm
4 - Chemotherapy round 4 starting at 4pm
5 - Ride with his brother back halfway starting at 11pm (if he starts chemo on time). I'll be leaving the house to meet them halfway as soon as I get a call.
6 - Back home as early as 3am.

A full day, indeed.

Osteoblasts and osteoclasts

In Josh's last meeting with his doctor (after the scans and before the 3rd round of the "healing medicine"), we found out not only that Josh's tumor is 50% reduced in size but that there are improvements in the bone that has been affected by the noma. He said something about "blasts," but I didn't think to ask more questions until after the doctor had left the room. I spent some time talking with Isaac (Josh's "doctor" brother) in the hallway outside Josh's "healing medicine" room (can't you tell I'm taking my Change in Perspective post to heart?) about the details behind how our bones work and what the doctor must mean.

Our bones have osteoblasts which build up and osteoclasts which break down and reabsorb. Isaac explained this is simple terms that I could understand...

Picture Josh's bones as the house we (literally we - Josh, me, our family) live in. There is rarely a time when there is something not complete about the structure of the house. Josh is continuously:

1. Breaking down parts of the house (Josh has deliberately punched holes in the walls in several rooms to see what's behind them, thinking there is some open space to be used in a better way) - osteoclasts
   
   
2. Building back up (framing out the space to create new living space) - osteoblasts
   

So, for the Memorial Day holiday (in addition to attending the City of Plano Memorial Day service on Monday morning), Josh (with the help of his dad and me) did more of that breaking down and building back up.

Five years ago (or so), we put up a wall around our back patio to create a nice enclosure. But over time, it had become more of a storage area for outside stuff rather than a well-used sitting area. So this weekend, we tore down one side of that wall and put up a new, deeper wall with new Anderson windows so that we can convert the space into interior living space - our new dining room. It'll really open up the kitchen area for the hopefully soon-to-come cabinetry that Josh will build next.

Nearly complete with the siding...next up on the exterior: caulking and painting.


I won't be at Josh's next appointment this week, but hopefully Isaac can get a few more details from the doctor on what good things seem to be happening with Josh's bones.