I'm interested only in the present

T, friend:  Thank you for the walks this week.  They mean so much to me, and I hope that we can do some more in the coming weeks.  It is such a treat for me to get out during the day, in the sunshine, and move my body in the fresh air.  I appreciate you taking the time to help me recover!!

I continue to be humbled by and grateful for my family, who has rallied around me this weekend as they always do.  I have always adored you, and I hope that I show you that enough when I'm well because I know I don't when I'm unwell.  Thank you for the errands, and the childrearing, and the company.  And this time especially to my daddy, because he schlepped me to my appointment on Friday and rubbed my back in the waiting room while I suffered a fair bit, and I'm certain suffered a fair bit himself when his oldest daughter was told she's being instantly admitted because her guts could blow.  Being a dad is hard!!  PLUS, he was so focused on carrying my coat and crud that he forgot his own coat in the Oncology coat closet, which of course was loooong closed by the time he departed the hospital.  Our hero walked home without a coat; thankfully his car keys were not in the coat.  

Tonight's blog title is brought to you by a quotation from The Alchemist, by Paulo Coelho.

Because I don't live in either my past or my future.  I'm interested only in the present.  If you can concentrate always on the present, you'll be a happy man.  You'll see that there is life in the desert, that there are stars in the heavens, and that tribesmen fight because they are part of the human race.  Life will be a party for you, a grand festival, because life is the moment we're living right now. 

Presently, I am in the hospital, being a superhealer, loving you all in my heart, which is full of happiness and gratitude for you.  I've been here since my check-up on Friday afternoon--I did not pass go, I did not collect $200!  My oncologist saw my puffy belly (SO puffy, guys, like a damn down comforter under my skin), ordered an x-ray, and admitted me for the duration.  Diagnosis:  distended ileus!!  Caused by the opposite of diarrhea:  immodium!!!  Frustrating to be sure, and important information for any future neratinib-takers out there, but I assure you that I was and am grateful for the hospital stay.  A distended ileus is super dangerous and I'd rather be receiving fluids and dealing with it professionally than weathering things at home. 

The main reason for the hospitalization was the fear of rupture.  Things were so blocked and swollen in there that I was at a risk for rupturing (I promised the surgeon I wouldn't, and I did not, thankfully) so I was under the watch of the on-call surgeon all weekend.  He's ordered x-rays and checked on my belly every day, and it is improving every day. 

I was not allowed to eat or drink anything until Saturday, at which point my x-ray was slightly improved so I was allowed to drink clear liquids (juice, broth).  Prior to that I did not mind not eating.  Eating had been such a chore all week, but I had had to eat my three meals so that I could take my steroids, so I had been a dutiful little eater, even trying to eat lots of calories as Dr. Oncologist ordered (my weight was dropping just a bit, prob just muscle mass loss.  I'll get it back in no time).  So had a blessed break from eating for 24 hours, but by the time I was allowed to drink the fluids I was ready.  The broth hit the spot!  I sucked it down like it was Thanksgiving dinner.  I even had it for breakfast, which was weird but better than nothing.       

Then TODAY Dr. Surgeon said that my guts are looking good I don't need anymore x-rays, and that I could eat a FULL liquid diet!  Oh man I was soooo hungry and ready for that.  I thought a full liquid diet would just be jello and pudding, but oh no, there are OPTIONS.  I've had cream of wheat, cream of mushroom soup, pudding, custard, peaches, yogurt, and applesauce.  A semisolid feast in my opinion!  At dinner Dr. Surgeon said I could even have a BITE of toast.  He made me promise not to eat the whole thing, but he said I could have a bite (I had three bites, don't tell on me).  And if all of this food stays down (it has, it is; he's worried I'll get nauseous and reverse the progress) I can have WHATEVER I WANT FOR BREAKFAST!!!!  I'm gonna be up at 4 am ordering room service, ha.  No I won't go nuts.  I need to gently restart my colon!  I have oatmeal in mind, maybe a baked potato.  I gotta get some microbially-accessible carbohydrates to my colon!  The full liquid diet is feeding my small intestine, which is awesome to get things moving and wake up my guts, but to truly recover I've got to feed the bacteria in my colon.  As I recall the hospital food is sufficiently tasty, but it's very Midwestern.  I don't think they have lentils on the menu.  I'll explore tomorrow! 

J.T., PhD, what's your prescription to fix up my gut?  I can be your n=1 test subject: tell me what to eat to restart my colon without making my ileum want to puke!  (J.T., PhD received his PhD in my lab last summer and wrote a gorgeous thesis on beneficial gut bacteria of mammals.  He's a world expert in colonic bacteria, so hopefully he'll comment on what I should eat then you can all go out and eat the same thing and improve your gut a little bit.  Now that J.T., PhD is famous on the blog we actually do need "Ask J^)#$" t-shirts, ha!.)

Another recovery thing that is going on is that Dr. O is stepping down my steroid dose.  This is absolutely fabulous because the steroids are making me so puffy.  My face is swollen, my feet are swollen, my joints are swollen.  That said, my brain is also swollen, so it's a dance I'm supposed to be doing.  I'm supposed to pay attention to the pressure in my brain and not let it get worse.  If it worsens, the roids go back up just a tad.  If the brain pressure stays the same or continues to improve as the roids decrease, I can keep decreasing the roids.  I'm on a lot of roids, so the step-down doses are spread over several weeks.  I'll be glad to be off the roids, but the brain pressure is certainly real so I'm under no illusion that the roid step-down is going to be quick.  I'm grateful for the lack of seisures and would like for the no-seizure trend to continue!

One thing I adore about being in the hospital is that I get to walk a lot.  I just grab my IV pole and walk some hot laps up here on the 5th floor!  I don't need any help!  It's wonderful, and likely very good for my guts and my brain. 

I've also done yoga every day while here.  I can't do my lay around flopping on the floor yoga because--hospital floor, yuk.  But I have a few standing poses for which I don't fall over, and there's a few seated poses that work okay with the given furniture.  I stay close to my bed in case I tip.

One weird thing about staying in the hospital is always sleeping.  This time a new thing is that they'd like for me to do is strap these leg massagers on my legs when I'm laying down, to prevent blood clots.  Fine with me, I don't need a blood clot!  I'm an obedient patient.  But they massage alternately--left leg, right leg, left leg, etc.  This alternate rubbing gives my body the sensation of spinning when I close my eyes and start to fall asleep.  So the other night I started spinning and all of a sudden this enormous snow-white orchid bloom, the size of a dinner plate, spun into my head.  It had magenta coloring outlining the center of the bloom, and it was perfectly the size of my brain.  It lodged into my brain, completely covering my brain like a blanket.  It smelled nice and kinda helped with the spinning, so I let it rest there for awhile.  Then the mouth-like magenta center of the bloom opened its jaws and started munching on Lloyd!  I could hear it crunching!  It was so weird!!  I haven't decided how I feel about this vision yet, it was that powerful.  I don't usually have such strong visions; even my yellow paintbrushes were more abstract than this hungry orchid.  Hopefully I can have a more peaceful sleep tonight and welcome the hungry orchid more fully in the light of day.