…I was about to have my next MRI, to evaluate the effectiveness of what I think (I’ve lost count, and don’t feel like going back through my records) is my 5th chemo cycle on this particular tumor – the last scan appeared to show encouraging results (but those can be misleading) Long story not really short, the scan showed continued tumor growth, so we dropped that chemo, and now I’m just doing the supplental treatment (Avastin), I’m not sure what my next move will be yet -the docs aren’t recommending another chemo at this time, and I’m not pushing for one, chemo doesn’t appear to be what’s going to get this thing.  Basically, I’m sick of making big decisions, and yeah, I trust God to guide my steps but ultimately I’m pulling the trigger on big stuff from time to time, easy would be nice, but perhaps boring (but as my local doc says, “boring is good in this business”)

As for how I’m feeling, I’m mostly just really fautigued(still working, but able to sneak a nap most days)my left arm is doing some strange nuero things these days, freezing in weird positions (I’ve got a constant T Rex claw thing going on these

Thanka for all your prayer, encouragement, and support, the next update will come sooner than three months away this time…

…I was about to have my next MRI, to evaluate the effectiveness of what I think (I’ve lost count, and don’t feel like going back through my records) is my 5th chemo cycle on this particular tumor – the last scan appeared to show encouraging results (but those can be misleading) Long story not really short, the scan showed continued tumor growth, so we dropped that chemo, and now I’m just doing the supplental treatment (Avastin), I’m not sure what my next move will be yet -the docs aren’t recommending another chemo at this time, and I’m not pushing for one, chemo doesn’t appear to be what’s going to get this thing.  Basically, I’m sick of making big decisions, and yeah, I trust God to guide my steps but ultimately I’m pulling the trigger on big stuff from time to time, easy would be nice, but perhaps boring (but as my local doc says, “boring is good in this business”)

As for how I’m feeling, I’m mostly just really fautigued(still working, but able to sneak a nap most days)my left arm is doing some strange nuero things these days, freezing in weird positions (I’ve got a constant T Rex claw thing going on these

Thanka for all your prayer, encouragement, and support, the next update will come sooner than three months away this time…

Poor Mrs. V! She has to cook Thanksgiving dinner, and she’s never cooked a turkey before! So she turned to some experts to help her out—her second grade class. They generously shared their recipes for how to cook a turkey dinner!

S.- First you need a turkey. There are turkeys in the wild. Go out in the wild and try to catch one. Take off the feathers (or you can just put it on the barbeque and wait for the feathers to burn off). Cook it for 30 or 20 minutes. It’ll be brown, with no feathers on it. Set the table. Gets some fancy plates, fancy napkins and forks. Have peas and corn. You already have the meat, because there’s turkey. Have ice cream or Skinny Cow ice cream bars for dessert.

C.- We do enchiladas. Get a turkey. Put some little tiny corn in it. Put some vegetables, like broccoli, in it. Get a big pan and put the turkey in it and put it in the stove. Cook it for 500 minutes. Put the turkey in the enchiladas, and put some cheese in it and put some sauce on top of it. Put some sauce inside it, too. We eat some other things like cheeseburgers. Get some buns and cheese and carne (meat). Dad comes home and he puts it on the stove. Invite other people to your house, like your family.

S.- Put the turkey in the oven. Wait for a long time, like around an hour. Cook it around 10 degrees. Put a fork in it and open it up. It will look like chicken. Taste it so you’ll know how many minutes to put it back in the oven for. It’s not done if it’s really watery. If it’s juicy and sweet, it’s done. While it’s cooking you should do the drinks. Have apple cider, or whatever your guests like. You could have enchiladas, too. They’re really easy. Get olives and chicken and tortillas. Put it in a wide pan dip it in spicy sauce. Put the olives and meat in it. Cook it in the oven for half an hour or less.  

L.- Get a turkey at the store. Put it in a big bowl. Stuff the turkey with stuffing. Stuffing is made of potatoes and meat. Put it on the stove. Fry it for 20 minutes. Have mashed potatoes and salad and rice. Put some seasoning sauce on the turkey. Set the table. Have some pumpkin pie for dessert.

A.- Get a turkey at the store. Check the turkey to see if it’s cold. If it’s cold, put it in the oven. Cook it for 40 minutes at 5 degrees. Get the table ready. Clean it and wash the plates and cups. Put apple juice in the cups. Have enchiladas. Get tacos and put cheese in them. Roll it like a circle. Cook them in the microwave for 20 minutes. Have frijoles (bean) burritos for dessert!

B.- Get a turkey at the store. Put it in the oven at 5 degrees and cook it for 10 minutes. Get it out and put it on a plate and put it on the table. Make scrambled eggs. First you get two eggs. Mix them up and cook them in a pan. Mix them and flip them over and put it on your plate. Pour some juice.

P.- Buy the turkey. There’s this wrapper inside it. You have to stick your hand up in the turkey to get it out. (There’s nothing in it. It’s just a wrapper.) You have to pull it out with your hand. Put the turkey in the oven and let it cook at 30 degrees for 1 minute and 30 seconds. Put the rest of the food on the table, like mashed potatoes and gravy and beans. Put bread on the table, too. For dessert, have an ice cream cake from Dairy Queen.

C.- Put some white sauce on the turkey so it will taste better. Put some cheese on it, too. Put it in the oven at 5 degrees. Cook it for half an hour. Have a plate of rice with stuff like sauce in it to make it yellow. Have meat and bread, too. Have pumpkin pie for dessert.

S.- Buy a turkey. Turn on the oven to 50 degrees. Stuff it with stuffing. Stuffing is a type of stew. Cook it for 30 minutes. Make mashed potatoes, green beans, and stew. Set the table. Have pumpkin pie for dessert. Get a pumpkin and take off the top. Take out all the seeds and put it in the pan that pies usually go in. Cook it for 15 minutes.

M.- Cut the turkey. The way I was taught how to do is to put some stuffing in the turkey. Stuffing is made out of bread crumbs and herbs and stuff. Start to cook the turkey. The oven should be 30 degrees. It takes about 20 minutes to cook it. Make mashed potatoes. Put butter and milk and potatoes. Peel them first. Mash the potatoes up, and then cook them. I’m thinking of vegetables. How about broccoli? For dessert, have pumpkin pie with whipped cream on it.

J.- Get mashed potatoes. Get potatoes and take off the skins and mash them. Buy gravy and pour it over the potatoes. Get a turkey and put it in a pot. Put it in the oven at 160 degrees for an hour. The oven will beep like this when it’s done: “Beep! Beep! Beep!” Get ham and corn and stuffing. Have pumpkin pie. That’s what my family eats at Thanksgiving.

S.- You have to buy a turkey from the store. Heat it up for 20 minutes in the stove. It should be 10 degrees. Cook it until the oven beeps. Make salad from carrots, tomatoes and lettuce. Have dressing for the salad. Have juice to drink. For dessert, have a cookie.

C.- First you buy a turkey at the store. Take it home and unwrap all of it. Some turkeys have strings, and some don’t. The strings are to hold it together. Warm your oven up for 5 minutes. It should be probably 70 degrees. Cut the turkey a little bit and put it in the oven and keep it in there for 30 minutes. Mash some potatoes and some rice. Buy a can of gravy at the store. Take the lid off and warm it up in the microwave for 2 minutes. Have some pumpkin pie.

C.- Buy a turkey from the store. Bake it in the oven for 14 minutes. Set the oven at 11 degrees. You can put a temperature thing in the turkey so you’ll know when it’s done. The temperature should be 14 degrees. Make stuffing from the turkey. Stuffing is made of butter and sugar and salt. You could have some ham with applesauce, too. Make some pasta, too. Have some ice cream with a cinnamon roll for dessert. Or you could just have soup.

A.- Get a turkey at Safeway. Buy it and bring it home. Put some oil and seasoning on it. Cook it in the oven. The oven has to be 375 degrees. It takes 30 minutes to cook. It will be brown and crispy when it’s done. Make toast with butter, and have soup. Get a special drink like sizzling apple cider to drink. Make pumpkin cream pie for dessert. Get a pie crust and put it in the pan. Get a pumpkin. You have to scoop out the stuff inside the pumpkin and cook it. Then take out the seeds and put the stuff in the crust. Get some whipped cream and pie seasoning. Put the whipped cream on top. Take a knife and cut it up and eat it.

P.- If you spend at least $100 at Safeway, you could get a free turkey! Take it home. Put ten bags around the bag that surrounds the turkey, and put it in the garage freezer. Then put it the refrigerator after it’s frozen. On Thanksgiving, put the turkey in the oven. The oven has to be 150 or 152 degrees. It takes about an hour or an hour and a half to cook. Or 15 minutes. It will look like a chicken when it’s done. Get some turkey gravy for the turkey. We get it at Costco. Set the turkey gravy on the counter so people can put it on their turkey, they want to. Usually for a side dish my family has some homemade raspberry Jell-O. Have mandarin oranges, and salad. You could make some popcorn, too. Have carrot cheesecake for dessert.

J.- Stuff the turkey with mashed potatoes. Put it in the oven and put in those red things that go in the legs. (They let you see if it’s done) Cook it for an hour at 39 degrees. If it’s dark brown, it’s done. You can also take out the things on the legs to see if it’s done. Or just poke it in the middle. Make gravy and this other sauce mix. Stir them up together and put it in a bowl. Have eggs and chips with guacamole for a treat. Decorate with balloons. Have brownies for dessert.

T.- Get a turkey at Haggen. Unwrap the wrapper and bake it for 20 minutes. Set the oven at 450 degrees. Make stuffing. Stuffing is made out of the turkey’s insides. It’s gooshy. Have peas and carrots. Make mashed potatoes. Smoosh the potatoes with this thing that looks like a… smoosher. It’s called a potato smasher. Have celery and vegetables and fruit. Have extra candy on the side. Have pumpkin pie for dessert. You can buy the pie and put it in the oven and let it cook at 460 degrees until the timer goes off. It may take 30 minutes. You want it to be nice and hot. Set the table and say a prayer!

D.- First you have to buy a turkey. Put seasoning on it, like pepper and salt. Fry it on the stove for 25 minutes. It’ll be dark. Make mashed potatoes and gravy. Take a bowl and put some potatoes in it. Start smashing them. Pour the gravy on them. Have corn and noodles. Use fancy plates and fancy napkins. For dessert, have pumpkin pie.

A.- Buy the turkey at the store. Unwrap it and put it on a tray. Put it in the oven for one minute and 50 seconds at “Medium.” Have mashed potatoes and gravy. Make gravy from meat and the juicy stuff that’s in the same pan as the turkey. The gravy will be at the bottom of the pan. Have beans and olives. Buy some games that you can play together. Have brownies for dessert. And maybe some cookies, too.

M.- Find a turkey at the supermarket. Or you could do live hunting. When it’s dead, clean it by washing it in the sink. Cook it in the oven on “Warm,” like 26 degrees. It takes an hour to cook. Make mashed potatoes. Get a packet of mashed potatoes. Buy some gravy. Put the gravy on the mashed potatoes. Have salad, too. Get a Thanksgiving tablecloth. Put the food in fancy bowls and plates. Have eggnog ice cream for dessert.

*Author contact info available upon request: do not repost, or publish this content w/o expressed written consent from author*

So, all legit stuff happening, but one fairly significant piece of the puzzle was left out of the communication loop. Of my dozens of clinic visits there this is the first time there’s been any kind of problem; I guess I was just due.  Frustrating to have inconvenienced myself andmy rides, and to have taken the day off work (was ahalf day – anyway). But at the end of the day, I’m on the books for a repeat of all this buildup again in mid Dec – an appt which will be triple confirmed…

..lesson previously learned, but forgotten, take control of your own medical treatment plan, and don’t assume others are doing things right on their end; scrutinize, and double check everything…

I’ll have something more fun up here soon, but probably no health updates for awhile (though this week has been a frustrating one in that area, as I’ve experienced several bad seizures, and always have to expect more, although I am able to anticipate them up to a minute in advance….)

Thanks for your prayers & your concern -

A few weeks ago while on what has become my every other week trip to the local Trader Joe’s grocery; (In the interest of story brevity; I’m just going to assume you know what Trader Joe’s is (if not, here you go).

I was simultaneously impressed, amused, and annoyed by a Wed. eve. run to Trader Joes…as I knew it would be really busy (and knowing I’m not steady enough on my feet for lots of spacey distracted shoppers); I opted for the motorized cart – which stopped being a fun alternative after about the 2nd time.
After the mgr went way out of his way to get an immobilized cart running for me – then track me down to let me know so….

When people see the cart & the cane, their helpful natures come out; everytime I looked perplexed or like I was efforting to do something, I had someone stepping up to offer assistance – they just didn’t understand that I always look like that (I’d thank them for their concern, and let them know that I was in control of the situation, unless it involved making a decision or fighting my way to the samples counter). Very sweet, genuinely kind people…some might be offended by offers of help, so good on them for just putting it out there (cuz sometimes people just don’t feel like asking for help when they need it)

But, for all the verbal helpfulness, the masses still made my shopping experience a difficult one by stumbling around like it was the first time they’d been to a grocery store before; thankfully, I know how to anticipate others’ unpredictable movements, which usually means I pause before a blind corner; annoying all behind me, until they’d see some very distracted, rushed person flying around said corner w/ their head down. Or stumbling around in front of displays, which I can also predict & pause my path so as to avoid the eventual collision. Annoying those same fellow shoppers, who didn’t understand the idea of looking several steps to avoid catastrophic results (true visionaries are never appreciated in their time)

As my body becomes more and more unsteady, or at least doesn’t improve; I’ve found myself taking the occasional fall (nothing too serious, just seriously embarrasing). I’m having to face the prospect of a life (however long it would be) of significantly diminished physical abilities.

Perhaps my takeaway from this whole story was an interesting study in good intentions(in the vein of “let me know what I can do to help“); perhaps it was more a reflection of my own selfishness (having come to both anticipate & expect a certain response to the visually obvious disabilities I’m sporting these days…perhaps I just needed to put something up here again, and this story was as good as any( they can’t all be prize winners)

I’ll discuss my overall state in this writing piece, but of immediate significance was my recent MRI scan which showed no new significant tumor progression (read:current infusion of the $10,000/bag stuff + chemo; looks like it’s at least keeping things from getting worse, which is about the best we can realistically hope for after the aggression this tumor’s been showing).

Next up is just staying the course on treatments, continuing to back off the steroid that reduces swelling inside my head, but increase it on the outside (it’s ok if you’ve seen me in recent months and noted how chubby my face was getting).  My next scan is the day before Thanksgiving.

And again, if you don’t see updates on here, that generally means there’s nothing new to report, or that I don’t have the ability to do regular writing.

Of Instability& Declining Ability

I’m not going to lie; it’s been a rough couple of months.  You’re not seeing many new updates here in part to my prolonged nomad status in which I’m still periodically digging through a storage unit for items like my digital pen (the one that allows me to convert handwriting to digital type), and has me living in a general state of instability (not a good place for me).  While frustrating to not have the stability that comes with a consistent place to live and knowing where all your stuff is, it has been a real blessing having the love and hospitality shown to me that I have (my Gift of Take has been well exercised of late as has my pride swallowing since I want nothing more than to be fully independent and not be taken care of).  So that’s how instability has done a number on me and has thrown a huge roadblock in my writing routine.

Over the past month or two, I’ve definitely observed a sharp drop-off in my left side strength, which particularly manifests itself in my walking (which happens exclusively with a cane these days what with my being pretty tipsy).

The chemo treatments I’ve been taking for the past few months (a daily pill of Etoposide, which I’ve tolerated quite well, something I attribute in part to my weekly acupuncture treatments and to the many, many prayers being sent out on my behalf, have left me pretty wiped out much of the time.  I tell people that every day feels like I just took a long hike the day before (but without the benefits of enjoying nature and of several hours of exercise).

Are you having any pain (one of the side effects of rapid advancing glioblastoma)?  I hear every time I go for a doctor checkup.  I tell them the same thing; the only real pain I experience is the pain in the neck it is to not be able to tie my shoes and the 5 min it takes to put on a pair of pants, not to mention the round of phone calls required for the simplest errands.

In particular, my walking and balance have decreased significantly of late.  I’m quite wobbly and am a significant fall risk any time I’m mobile, even with a cane.   My best falling story came at a local dairy while buying ice cream cones with a friend.  I got a double scoop and polished off about half by the time I got to the exit.  When I walk these days my left foot drags along the ground throwing my balance off, and increasing the likelihood of tripping on things like rugs and flat ground and gravel (like at the park the other day).  So on my way out of the dairy dragging my foot along like a sack of wet laundry, and having left my cane in the car because I was feeling fairly cocky that day, I stumbled on a no trip rug; then tried to soccer kick it back into place (severely overestimating my abilities) causing me to list to the side and eventually go down. Thankfully I had plenty of time to throw my cone to the ground and brace myself for a rough landing, causing minimal harm to myself (some scrapes and bruises and lots of embarrassment), plus putting a huge scare into everyone in the place,including the store manager, who saw my destroyed pumpkin and raspberry cheesecake waffle cone and immediately ordered up a replacement cone (despite my having already polished off half the cone).  That, my friends, is one magical grift scam; I suggested to my friend that we go score half ice cream cones all over town in exchange for a few bruises.  We then determined that the ethics of that plan were questionable at best.  I’ve since decided that half an ice cream cone isn’t worth the risk of seriously hurting myself; a reality I face every time I leave the chair or couch.  My ability to not fall has significantly declined more and more; people who haven’t seen me for a while are in for quite a shock when they might expect to see the same active (vibrant?) young man I still think I am.  Much as they expect my intellect to be shot, and not (essentially) intact as it is.  I feel bad that they have to see me go through this, but, as I was reminded by a good friend recently, feeling that way is just another way of beating myself up (something I do quite well now that others aren’t expecting much out of me).

I mentioned last time that no news is good news; or as my local oncologist says: “boring is good in this business.”  As such I’ve had no blog worthy health news of late, my current chemo has really run my energy down, but not enough to keep me from returning to work (special education classroom support at a local high school (sitting in the back of a classroom trying to stay awake, and sneaking out for a sugar fix whenever I’m losing that battle).  My next MRI to determine the the effectiveness of this chemo isn’t until Halloween morning, so do I dress up funny for the scan…?

Other than that I have really nothing to add right now, and will get back to the business of writing again when I can locate my digital pen, which currently lies in a jam packed storage unit.  Any of you who have moved but not right into a new place feel my pain – I’m bouncing from guest room to guest room while my apt search plays out (the thing that I use to turn handwriting into digital text – something about as long as this I can do one handed just fine).

This past week my church looked at Ps.63 where David longs for water in the midst of his desert; the speaker (a good friend who teaches education students) made a point about walking w/ others in their deserts, and called me out by name (the one week where I wasn’t feeling up to making it in – I wasn’t there, but listened online later) as someone who has a unique desert experience that always leaves him laughing when he encounters me in it – I’ve had others share similar sentiments, and take that as one of the greatest compliments I could get; being able to uplift in the midst of a struggle…

But just the same I was reminded recently that while I haven’t been 100%  at any time in the past 3 yrs, the diminished percent (let’s say 70% I’ve been at has been  a greater 70% than if I had remained at that previous 100%, and that, if I could, I wouldn’t trade the two.  Having seen what I’ve seen in God’s guiding hand, in my support system, and in myself, I have little choice but to remain thankful for not being 100% (“…for my strength is made perfect in  weakness (I Cor 12:9).”), or become miserable and ungrateful for the 70% - thus robbing me of whatever time I’ve got left here. As sick as it sounds, cancer has significantly improved my life in many ways.

So, when the latest image came up on the screen, showing my tumor to still be spreading despite several chemo treatments, I wasn’t real surprised, but was plenty disappointed.  I was really hoping this one (as much if not more than others before it) was going to at least slow the momentum, which it may have done, it’d be near impossible to gauge rate of growth with any accuracy.  It really deflated me more than others in recent memory have…

Now, we move on to the next one (which I’ll give a shot, seeing how well I tolerated this last one, after this, though, I really don’t see chemo as my best primary option any more).  As my doc stated, the goal now is to keep me independent for as long as possible; not the kind of language an otherwise healthy, fully independent, & mentally sharp young guy wants to hear. I’ll share more when there’s more to share (not anytime real soon)

So, in all that, why do we trust ”Right Now” more than what we’ve always seen? I wish I had an answer, but that would be a right now instinct, rather than a meditative, prayerful answer: I’ll just let this one fester in you.  “Right Now” usually lies, and uses
my fears to produce a reaction that rarely serves us well