More milestones

Along withbeing half-way through treatment, Friday also marked my first day back at work!  And by day I mean night, because I'm keeping to grave shifts until I'm more physically back up to speed. Work went well, I didn't have any problems staying awake the whole shift, although I know I'm definitely not ready to go back to my old double-shift, that would take way more energy than I currently produce in a sixteen hour period. But I'm glad to be back to work and feeling like a productive, actual person again! Pretty soon I might even start to adjust to being functional and not feel out of place in everything I do... well, I can hope, right?

-Mark

milestones

I am realizing I forgot to mention that yesterday was my half-way through radiation point. I am finished with three of the six weeks that I will be getting radiation. So, hurray, half-way done!! Now the rest should be easy, unless that fatigue decides to sneak into the picture somewhere along the way. Until then I'm counting down the days until July 22 when I get to have my very last radiation treatment and then start the countdown until my next MRI to see if treatment worked or if I need to start all over from the very beginning. That is what we are most hoping to avoid. Well that and death, if you know what I mean. Unfortunately, the tumor growing back could easily lead to death in a short period of time, so I'm  going out on a limb and betting that the tumor doesn't even come back, but all this chemo and radiation have wiped out the last remnants of that misguided mass of rapidly replicating cells. I seriously hope to soon, in a few months or more, be able to say, like Rachel's awesome cousin Laurie, "I am cancer free!" I even got to talk to Laurie this morning, it was as much of a treat as the biscuits and gravy we had for breakfast. Those of you on the Gardner/Ball side of the family may know Laurie, but for everyone else let me just sum up that she is an inspiring survivor of cancer and has shared much of her experience with us and the world through her blog, which was a major inspiration for the documentation of our journey through cancer-land on this blog. So someday I want to be just like Laurie, or more specifically, just like Laurie is right now, without cancer. I would also like to be as good of a writer as she is and as talented at finding delicious recipes and foods. That woman seriously has good taste. But enough about my ambitions, Let the half-way celebration continue. I think I'm going to take Rachel out to dinner to celebrate. She is very tired from chasing children all day, but I think I might be able to rouse her with a promise of delicious Indian Food... We'll have to see! I'll let you know tomorrow how our celebration works out.

-Mark

Bald Spots!

the mask keeps me from moving and messing up the radiation in my brain, it wouldn't be so bad if I could just swallow, but that thing is a bit tight all the way around. Getting puffy from the steroids hasn't helped at all with the tightness.

this is the linear particle accelerator that shoots extra powerful X-rays through my brain, hopefully killing the cancer cells. It moves around and shoots me mostly through the sides of the head.

here are some lovely bumps left from the mask just so you know I'm not kidding when I say it is snug.

my slightly lopsided smile with chubby steroid cheeks.
this is 2 days into radiation

my slowly healing surgical incision.

Me finally doing some actual work around the house two months after surgery, boy am I lazy that it took me that long to help out.

turns out that radiation will eventually cause hair loss, at least now we know where it's going into my head...

not sure if you can tell the difference in the chubbiness of my cheeks, but it's getting worse...

this is 3 weeks into radiation (steroids are causing the chubbiness, but time is currently measured in radiation treatments)

ever wonder where hair goes when it is lost? Well, what didn't end up on my shirt ended up in the sink.

what ended up in the sink really ended up in the garbage.

Side-Effects

We are finally seeing some of the predicted side-effects of radiation, namely, yesterday I started losing some hair. Today I have two full blown bald patches on the sides of my head. Or rather, I have one bald patch on each side of my head making two in total. Which confirms that the doctors have, in fact been accurate one aspect of the effects of radiation, and that's reassuring, until I realize that means I could get very tired any second now from radiation fatigue. So, if this post ends abruptly or with an incomplete sentence it could be the fatigue kicking in and I just couldn't finish this post before needing to go to bed and rest, or more hopefully, I'll continue to have just enough energy to do everything I need/want to do without needing a lot of naps. So, I guess I'll count this as good news shared, just because I can. Feel free to chime in; let's make a debate of it - Is hair loss good news or bad news?

-Mark

Random thoughts

Wow, time seems to be flying. I don’t know that I can remember the last time two months went by so quickly as they have since my surgery. Maybe it just seems to go by quickly because of my expectations, it feels like two months out of surgury should have been enough time to lose some weight and get into better shape and lose some of the side-effects of surgery, like my raspy, monotone voice and stuff like that. But having never been through the brain cancer process before, what do I know? I guess in another rapidly coming month, I’ll know a little more, and if I think about it I may even be learning to accept not knowing as much as I want to know, which has always been a challenge for me, my curiosity and desire to know things has long been stronger than any sense of patience. But, when you have no choice, eventually the patience kicks in to keep you sane, Thankfully! I can hardly believe that Independence Day is almost upon us. I love this time of year! Being a patriotic sap, I find that the next little while will have me crying a lot, since the cancer hit I cry at all mentions of patriotism, sacrifice, death, courage, loss/sorrow, (pretty much anything these days) another wonderful effect of the cancer on my emotional state, and I was already a crier. At least Rachel is nice enough to laugh at me when I start crying for what is really not a good reason. Then we both end up laughing at me and have a good time. So, with that in mind, we should have a lot of fun this holiday season.

-Mark

Two Weeks Down - Four to go!

Wow, time flies when life is busy.  It hasn't been as crazy and unpredictable as it was before, but it's been rather non-stop.

Mark is finishing up his second week of radiation and chemo.  So far he hasn't really noticed any side effects.  The chemo doesn't make him nauseous - which we hear is either does or doesn't, so he should be fine with that for the next few weeks.  Radiation is supposed to make him tired, but that hasn't kicked in yet.  So far, we are considering ourselves lucky that he's been doing so well.

He got tapered down on the steroids.  He's still taking them, but a slightly lower dose, so we're hoping that helps him feel a little bit better.  He's put on enough belly fat that our bellies are growing at about the same rate - which means that he bends about as well as a pregnant woman heading into in their third trimester...  He has a slight disadvantage as well, since he's still in the process of re-learning how to use his body - specifically his left side.  Largely, he's fine and totally functional, just a bit slower and slightly lopsided at times.  He walks with a bit of a limp and a tiny bit slower than most would consider a normal speed - but he gets around, and gets around well.  He uses his left hand for a great many things, but every now and then I catch him getting things out of the fridge or cupboards with only one hand (right hand opens the door, gets the item out, puts it on the counter and closes the door, all while his left arm just hangs out at his side - he's getting better at noticing, and fixing, that though).

Overall, Mark is doing well.  The doctors are impressed with his recovery and other than a few lab results being a tiny bit high (which they think is from the steroids), medically he's handing all the treatment well too.


Mark went to class again for the first time this week!  He did well.  His class is about 30 minutes north of us.  For the first trip (and maybe more, depending on how tired the radiation makes him) I went with him just to make sure driving wasn't an issue.  He's been driving himself around town on occasion and has been doing well.  He's even mastered the stick shift again! (to be fair, all it took was one test drive just to make sure his left leg was strong enough to consistently press the clutch - it was)

On his way to class we started out with him driving the stick shift (his small car that has pretty much no temperature control for the air).  A grand total of 4 blocks away he could tell that his foot was going to cramp (he's been having cramping issues with his good foot and hand for a week or two now - random...) so we switched drivers - and cars!  So I drove him up to class in our van (with A/C!) and he went to class...

From his account all went well!  He's feeling sharp enough and ready for school again, which is awesome!

There are several small things about Mark that aren't the same as they were before (and one or two big things - like his belly :) ), but largely he's super functional, a good conversationalist (sometimes a bit slow on getting the words out - and sometimes a bit fast getting words out...), has a great memory, and brings me breakfast in bed most mornings!  I'll take it! :)

Pictures of Adventures at Home

So, I tried to document some of the early adventures of Mark coming home.  Here's some pictures of the more memorable times.

This first one is actually at the hospital, but I love that the kids had fun with the masks.

Here's the cinnamon and cumin next to each other.  The are almost identical, right?

From the French Toast adventures.

Um, no.  No, they are not... :)

Here's the egg sandwich that set off the smoke alarm.

The eggs are a bit on the over done end, but that is not black enough to have set off the smoke alarm by itself.  There had to be something else going on...

The kids having fun 'helping' Mark with some activities for him to get his left hand used to moving and doing stuff again.

Mark's Incision Pictures

Here are some pictures of Mark's head in various stages of healing.  If you're not into gruesome, this is probably a good post to skip.

This is his head with all the staples still in (all 31 of them) right before the nurse came in take them out.

This is the nurse taking them out. 

And, because I would be curious if I hadn't seen it, I took a close up of the tool that she's using to remove the staples.

Here's a chunk of the staples that she took out.  She still had a few more to remove when I took this, so this isn't all of them.

Mark's head, with the staples newly removed.

Mark's head, with the staples out and after a few hours of Mark scratching...  Yes, it's starting to bleed and open up a bit.  He has always been a head scratcher, that's his default move when he's thinking.  It's much worse now that it itches too.

This is almost two full weeks after the staples were removed, and right after he gave himself a haircut (in an effort to make it stop itching so much), so the scar is more visible.  The front part of his incision is starting to heal.  There are two spots towards the back of his head that have not fared so well.  The big black spot is the one that worries me the most.  The black is dead skin and is separating from the healthy skin next to it.  Normally, in a regular wound, that wouldn't be a bad thing, but that incision is not shallow...

The other spot, that I'm not sure you can see very well is right below the black part.  It used to be black, but Mark scratched off the scab, and now it's an open hole.  I kept telling him he was going to lose brain matter out of those spots if he kept scratching, but that didn't stop him... (Probably because he knew that there was no way that was true...)

The good news is that it's now been a few weeks since that last picture and his incision is starting to look much better.

Pictures Pre-Surgery and from the ICU

So, I got the pictures off my camera, and even found time/energy to go through them!  Horray for life settling down with a set schedule again!  

I guess I'll start at the beginning...

Here's the board in the ER that I took a picture of just because it was on my birthday (4/29) 

Mark with a tasty treat from our amazing cousin Laurie!  She lives out of state, but had it delivered to his room.  How awesome is that?

Mark getting his hair cut.  He had just cut it over the weekend, so there wasn't much for the guys to take off. 

With a fresh hair cut and those 'life savers' (both descriptively and literally) on his head.
The surgeons used those during surgery in conjunction with an MRI to help make a map of his brain (at least, that's the impression I got from the descriptions they gave us)

Here are Aunt Grandma's shoes.  This is one of the many that were taken by the kidlets while Mark was in the ICU.  Whatever it took for them to be comfortable with the situation was totally fine with me, especially when it's as cheap and easy as some digital pictures. 

More from the 'kid pics'.  This is Mark and I holding hands.  This was a fairly constant thing for those first few days in the hospital.

'kid pic' of the toilet in Mark's room - always a necessary photo...

Annie getting in some good snuggle time with her Daddy. 

This next one is a bit grody if you don't like bodily fluid.

This is the brain fluid that leaked out of Mark's head after they took out the brain drain.

And this last one is of Mark's crooked smile.  It's not the best picture quality-wise, but you can see how differently the two different sides of his face moved.  The left side of his smile is lower and smaller.  You can also see in his eyes that his right eye is more able to squint for a smile than his left one.  There's also a difference in the cheeks and how much of a crease there is on the two sides (how far back the mouth can get).  

But the awesome part!  

He was able to smile!!

Finally!

Finally, we got news today, some of it was even good news. First, I’m not a match for the clinical trial we were hoping to get into. But, now that we know that, I was able to start treatment today, that’s right, started treatment today! I am now irradiated.  And chemoed(can you even use chemo as a verb, and if so, what is the past/preterite tense, or I guess  the past participle would also do? (I’m clueless in either case.) Anyway, I’m very excited to actually be in treatment, doing something about this tumor that is surely trying to reconstitute itself in my brain. Take that! Let’s see how you like that one-two punch of chemo and radiation. research suggests this treatment is pretty effective, enough that I am hopeful that I will soon be a former cancer patient. Partly because of the treatment and partly because I know how many of you are out there praying for me to get better, I figure between those two things I’ve got a good chance. I’m counting on it. Literally, I’m up to a month and ten days since surgery. Every day has been a gift.

Today is the Day! Again, but for real this time!

We heard back from the oncologist.  Apparently the U got the results in late Friday evening, and Mark does not have the protein that indicates the mutation necessary for the trial.  That means that we don't need to wait to enroll him in anything new and he can start radiation today!  Mark is excited to get going on that!

Now we can start planning out the next few weeks, make some calls for appointments we've been putting off (since we haven't known enough of our schedule to feel comfortable scheduling anything too far out), and all that fun stuff.  We still don't know the plan - such as what time to go in today to start radiation, or what time radiation will be for the next several weeks - but knowing the future for a bit is so close we can smell it!  :)  It's a bit strange, actually.  I can only imagine what actually knowing stuff will be like - hopefully slightly more normal than it's felt for a while.

We should know more later today - like actually know more, not this pretend 'know more' where we just end up with more questions...

Of course, we've tried to write stuff like this in stone before and it turned out to be a mistake - hopefully this time it's real.  :)  Especially since he just took his first chemo pills!

We Heard Back!

Just got off the phone with the oncologist.  He has been calling up to the U all day, says he called every number he has for them and hasn't gotten ahold of anyone or a call back, so he doesn't know anything yet.  He's hoping to get ahold of them on Monday, he'll let us know, and then we can figure out what's going on.

Just trying to keep everyone informed...  (which our oncologist was bugged the U wasn't doing with him, so I figured I'd take the hint and let people know)

I was a bit caught off guard.  I guess I had assumed we would finally know something for sure, but Mark had expected to not find anything out today (he had assumed the info wouldn't get to us).  Turns out his instinct was more accurate than mine.  :)

Still on our ride on the Brain Tumor Express, it's just hitting (still in?) a slow part in the dark at the moment.  It started out with a bang, so the frequent change in speed and tempo has occasionally been a bit jarring, but there's not much to be done about it, so we'll just stay on the ride (it's not like we could get off if we wanted too).  We're getting used to it, and there have been some unexpected ups along with the downs, so it's not like it's been all bad. :)

Mark wants me to add that for the record, we do want to get off (part of why he's so anxious to start treatment).  Hopefully we'll know more on Monday...

another day, another change in plans

So, radiation and chemo have been put off a few days yet again, which is frustrating, but  bearable.

I spent a good chunk of this morning reading back on the blog and various email updates about my hospital stay and recovery from surgery and I am feeling compelled to express some gratitude for all the help, support, prayers, kind thoughts and comments and other service given so freely by so many. You have all been so good to me and my family, please know that we are truly grateful. Thank you! If any part of this ordeal has been uplifting or beneficial to you in any way, we love hearing about it, that’s why we made the choice to tell people about it here, and it’s nice to have choices like that validated. Please, especially be mindful of Rachel and all that she does and puts up with and be generous in her praise, which would be impossible to overstate. The poor woman has practically lost her husband, temporarily, and has been being a single, pregnant Mom to four kids all while taking care of a near-to-invalid man who once a functional husband and father, she rarely lets on how discouraging that can be, especially when there’s no garantee that things are going to work out the way we hope.

Thanks,  Mark

Just Kidding! Today is Not the Day!

So, we're not doing radiation today...  Turns out he was eligible for the pill trial down here, but he got randomized to be off the drug and to be part of the control group.  And we still don't have the results back from Salt Lake about the vaccine trial.  The oncologist down here called up there (which we think is part of why we were waiting in our room for most of an hour - even though it took 3 minutes to call us back) and we should - for real this time - have the results of that test by Friday.  Turns out we were misinformed, and Mark does need to be enrolled in the vaccine trial before he starts radiation, so if he had started today, without being officially enrolled, he would not have been able to do it (if he even qualifies, we still have no idea if he does or not - those are the test results we're waiting for, to see if he has the mutation that can be targeted by this vaccine).  He will still get the standard care either way, but now we know that if he does the trial down here, he will be doing it without the extra treatment.

So, just when we thought life would finally become predictable, it's not anymore...  :)  Welcome to the adventures!  Remain seated and keep your hands and arms inside the car and enjoy the ride along with us!

On a positive note, we got lots of stuff done today that we weren't expecting to have time to do, and we figured out why Mark seems to have shrunk.  He has gained enough weight with the steroids that he needed new pants.  I thought we had his size all figured out, but it turns out that I had mixed up some of the numbers (in my defense, Mark had confirmed them before anyone bought anything, but apparently his barely post surgery brain was not to be trusted as much as we thought).  I have been pinning up his pants for days.  At first I thought it was just a fluke or due to his posture, so I took in a little bit on his jeans in a pinch while we were out and I only had one or two safety pins.  Then I pinned that up a bit more securely when we got home and had more pins.  The pants were still too long, so I took them up some more (all with safety pins, my sewing machine is buried underneath tumor paperwork that seems to be piling up...  I'll find it again someday, but today is not that day).  Then I took up his church pants, then his other pair of jeans.  It was about to the point of being tragic just how much height he seemed to have lost (even though standing next to him I couldn't tell he was that much shorter).  Then I washed the jeans he wore to the hospital (I found them in a pile on the floor, so they missed a load or two) and for some unknown reason I decided to check out the size before I put them away.  Turns out that not only had we added a few inches to his waist, but also to his length.  I had upped that number by 2 inches...  It was quite the relief.  He wasn't shrinking!  We got him some new jeans today (ones that are the right size this time!) and he should be much more comfortable walking around, not having to constantly pull up his pants from under his shoes... :)

Today's the Day!

Mark gets to start treatment today!  He has been anxious to start doing something, anything, about this undesirable thing in his head and he's a bit relieved to get started finally.  It's been 5 weeks since the surgery, which is more than the 2-4 weeks we had been anticipating, so the wait has been even harder for him.  Also, I'm looking forward to life becoming slightly more routine.  Not normal, radiation and chemo should be on no one's definition of normal, but at least somewhat predictable.  We will be living at the hospital most mornings (or afternoons, I'm not sure what time that will be yet - still more questions...), and doctors appointments will still be a frequent occurrence (at least weekly with two different doctors), but we should be able to plan more than a day or two out without having things change on us in a few hours. :)  Yea!

We still don't know which trial he will be in.  He can for sure get into one of the trials (the one down here that's a pill - I should have a name for that, but somehow I don't), but he's more interested in the vaccine trial - that sounds super exciting to him from a scientific standpoint, and as long as this sucks, he might as well be excited - and we haven't heard those results yet.  I think they should have had the results by yesterday, so we should know today.  Mark has an appointment with the oncologist before his radiation appointment, and they should be able to tell us.  We might get to be the bearer of news to the radiation team, but at least we should know by today!


In other news, Shelly and Jason had a well check with the doctor yesterday.  I was more than a little bit late with Shelly (about 6 months) and only a month late with Jason...   Annie has an appointment on Monday and Emily was all caught up when I called a few weeks ago to schedule all my delinquent well child visits.  (Annie was already scheduled - she's still little enough they make appointments before you leave from the last one).

The doc was impressed with how well behaved, helpful and independent they were.  They are both doing well and growing as expected.  No real surprises there - they've gone through clothes and shoes fast enough I was not expecting them to have stopped growing...  Shelly got to get a shot.  She was so nervous about it, it was kinda funny.  We explained to her that the shot would only hurt for a minute (if that long) but if she got sick with this disease (chicken pox - I have mixed feelings about a chicken pox vaccine in general, but oh well) then she would be sick for week or so and itch everywhere, have to stay in bed and away from friends.  We let her choose if she wanted it then or to do it another time (or even not at all), and she was brave enough to choose to take it then.  The doc left to get the nurse to bring it in, and Shelly kept asking how much longer she had to wait.  Finally the nurse came in, and gave Shelly the shot.  Shelly described it afterwards as it 'only feeling like a pinch' and she was fine in just a few seconds.


Oh!  I got a new card reader for my camera! (probably my 4th or 5th...  It's tragic how many I keep needing to buy to replace ones that get either 'put in a safe place' or get found by a toddler, never to be seen again - I did have one that stopped working, but only one...)  When I get a chance I'll put up pictures.  I have several of Mark from the hospital, Mark at home, the kids in general, Jason's kindergarten end-of-year program, things like that.  I'm sure there are also several dozen that the kids took and I might make you suffer through at least a few of those... :)

Mark's Thoughts

So when Rachel and I decided that updates on the blog would be a good way to share this experience with other people, I had looked forward to being able to share good news with people this way. Unfortunately, there is very little good news to share with a diagnosis of brain cancer, even though things are going as well as they could be for now with my recovery from surgery, we don’t start chemo and radiation for a couple of days and then I will really know what it’s like to be a cancer patient. Maybe then I’ll get a chance to suffer patiently through something awful and feel like I’m earning some of the compliments I keep getting about handling the situation well. In truth, I don’t think I’m doing anything most people wouldn’t do, just trying my best to look on the bright side, which is not always obvious, but always there somewhere. For instance there’s the growing appreciation for abilities I once took for granted, like going to the bathroom without help. And always in front of my mind is the Amazing Rachel, who has been more than awesome! She has not only taken care of my every need: kept me fed, clean and clothed, organized a gazillion doctor’s appointments and medications, but been willing to talk to people, handle visitors, update the blog regularly, even when there is no good news to share, per se. but also support me emotionally while she is struggling with plenty of her own very tough questions and uncertainties. It has been easy to remain optimistic with the overwhelming support being offered by basically everybody we know. It seems that each person we talk to asks what they can do to help, and I never know what to say, because to ask for any more help just seems selfish, when we already have people bringing us food and helping out with the kids, mowing our lawn, donating money, and offering more of all the same all the time. We have been so blessed through this whole process it is humbling, which may well be the point of the whole experience, I guess time will tell. Don’t worry, some day I’ll get some good news and we’ll post it up here proudly for all to see.  Thanks for all your thoughts and prayers.  - Mark