Day 9: Still Queasy-Peasy

Yesterday was a bad day. Whew. They warned me about days like those, but you don't tend to really understand what they mean, until it happens. All nauseous, all day strong. Today was better, but I'm still battling the feeling. You don't want to eat, because nothing sounds good. You don't want to drink because everything tastes medicinal or metal. But I have to eat, and I have to drink to prove to them that I can take care of myself to get out of here.

4 of the larger pills I have to take every day are Prednisone. And that stuff tastes horrible! They dissolve so quickly in your mouth that you barely have time to get them down your throat and away from your taste buds before it starts busting loose. Blech!

Today, they've been dosing me pretty regular with anti-nausea meds. They seem to help, but then sometimes it feels like my stomach is in this sort of suspended state of feeling, where it doesn't feel full, it doesn't feel hungry, but it just feels queasy. It feels like it's just a part of you that's along for the ride, like your arms or your legs. It's weird.

I did get to see film of the mass that Notre Dame had for my family and I. That was so very nice and unexpected. I recognized so many people and I want to thank you all for coming and doing that for us. I'm sure Father Doyle even had some sign work for Donna to attend to afterwards. But it was very nice....and thank you again to all those who put that together and took the time out of your work for me and my family. Thank you all very much!

Donna also sent me a cool shirt in the mail today. It says "Certified Leukemia Butt-Kicker" on it. So, thank you for that Donna!


Well, after having another dose of anti-nausea meds, I think I'm going to take a nap. I know Katie is anxious to watch last night's episode of Battlestar Gallacticia, so I better make sure I have enough 'awake' in me to do it!

Jonathon out.

Day 8: A little perspective

Both Jonathon and I are anxious to see the special mass that our friends at Notre Dame held today. We are honored that they had this mass to pray for Jonathon, and it is extra special that it was in my old dorm. There are very few places you can work that care so much.

After a week of doing pretty well, today was the first day that Jonathon really felt bad. The nausea started this morning and wouldn't let up, and he's just totally exhausted. He's also starting to get a little stir crazy and wants to get out of here, but doesn't have enough energy to really do that. And like he mentioned yesterday, the metallic taste of just about everything is still driving him nuts.

But in the grand scheme of things, I think we've been really lucky so far. I just keep praying that things continue to look positive. The doctors keep telling us that he is their "boring" patient since his case is relatively uncomplicated so far, and he's responding so well to treatment. That is music to my ears.

A lot of people are asking when it might be ok to come visit, and we continue to ask almost everyone to hold off on coming here. If you have the slightest little sniffle, cough, or sneeze, or even were around someone that has the slightest sniffle, cough, or sneeze, or if you have kids, or are around kids, you could bring something in that might get Jonathon (or one of the other patients on this floor) very sick. Once we get through the round of chemo next week, we might be able to start coordinating visits with one or two people at a time, but please no surprise visits.

Other than all that, today was a pretty quiet day, which I have to say - is pretty nice. It's crazy how a little over a week ago, we were sitting at home on our couch, trying to decide what to make for dinner and playing paper, rock, scissors to see who would take the dogs out next, and now our whole life has totally changed. It helps put things into perspective in a lot of ways, and makes you again realize how special every single moment is with the people you love.

Day 7: Food Bad, Xbox Good!

The University of Chicago Hospitals might be nationally known for their treatment program with Leukemia and other things, but I can guarantee they are no where near the national rankings in food satisfaction. Blech! So much of what they have here is incredibly bland and average tasting - kind of like Rachel Ray's stuff. Oh snap! (Sorry, don't meant to offend any Rachel Ray lovers here.) Rachel could learn a thing or two from Giada de Laurentis, swear to Jesus. Despite the fact that the food isn't all the great, I'm also dealing with some sort of metallic/medicinal taste in my mouth that won't go away. It seems to have started with the chemotherapy, although I can't be sure. But it's driving my crazy.

My buddy Dan came up to see me today. He was already coming into town this weekend and stopped by for a 'say-hi.' He tried to help in getting my Xbox working online, but we're pretty sure it's the hospitals IT staff that are prohibiting that. I can still play my games, just locally and not online. Bummer. Everyone I play with on Call of Duty better rest up, cause the Bludstndhricane is down but not out yet!

I did get a 2 hour round of chemotherapy today. This dose, if anything, just made me very sleepy and worn out. I didn't get to walk on the treadmill today. Katie walked me up and down the hallway a few times, but that was about it.

The doctors are very pleased with my progress so far. One of the doctors we really love, Dr. Stock, who is pretty much the lead-lady on my case, keeps mentioning the word 'out-patient.' She mentioned it yesterday and today too. However, today she asked how long of a commute we have from home to Chicago. She's hinting at sending me home and doing the rest of this treatment out-patient. Of course, that gets us very excited. Nothing would make me more happier than to go home earlier than expected. But I don't want to go home until it's safe for me to do so either. I want everyone, including the doctors to be comfortable with that decision before doing it. So, we'll see what happens there.

My sister Jen is coming up tomorrow for a tissue-typing to see if she's a match for me with bone marrow. There's only a 25% chance that she is, but we figure it's worth a shot to find out. Everyone else has a 1% or lower chance of matching my bone marrow. That's crazy isn't? It's a wonder sometimes how our species survived in the first place.

Day 6: Do a Little Dance

Any day without tests or more treatments is a good day to enjoy!  This is probably the first day since Jonathon went into the ER last week (1/19) that he hasn't had some kind of tests.  So today, we took a stroll around the unit and even got him walking on the treadmill a little.  

Obviously, Jonathon was ready for a little fun as he danced like an Egyptian. ;) Needless to say, he's getting a little stir crazy - especially being limited to the confines of this unit of the hospital, and even then, he must wear a mask outside of his room. 

Jonathon also was happy when he got his XBox 360 working with the antiquated TV in our room.  We're still working on connecting it to the hospital's wireless network.  Thank goodness I have my iPhone, my laptop, my headphones, and the ability to leave the room whenever I want!  ;)

Besides having a little fun today, we also got some really great news.  The results from the spinal tap came back, and there were no leukemia cells in the spinal fluid.  (**Katie does the Snoopy dance**) This was just fantastic news, and even better, the doctor said that depending on where his blood cell counts fall to, we may get to do the last part of this month's treatment as outpatient.  He'd still be limited to staying home unless he's here for treatment, but at least he wouldn't have to be stuck in a hospital room.  

Tomorrow is another round of treatment, so hopefully Jonathon's body will be able to tolerate it as well as Monday and Tuesday's treatments went.  After that, it'll be an every Monday schedule for the next several weeks.

We continue to be overwhelmed and thankful for all the support and care that everyone is sending through emails and calls.  We are amazingly blessed to have so many special people in our lives.

Day 5: Surgery and a Spinal Tap with a Twist

'I am Jonathutus of Borg.'

Today, I had my access port installed into my chest. This is where the chemotherapy will be given, as well as future blood draws, etc. It makes it a little easier so I don't have to endure so many needle stabbings, and because chemotherapy is very hard on your veins. I have what's called a double port Port-A-Cath which allows for multiple draws and gives essentially. In other words, they could be drawing my blood from one port, while they're giving me a pain med in the other. They simply inject IV needles in through either port, and the needles stay there until the task is done. The port remains buried beneath my skin, and will likely stay there through the duration of my entire treatment. The port feels a little sore right now, but I'm told in the future I won't even know it's there.



I was awake for the surgery, but I was pretty dopey. They installed the port right below my right collar bone, so it was hard for me to see them actually doing it. They numbed the area pretty well, so I didn't feel much at all.

Afterwards, I was allowed to eat breakfast and nap a little before the action resumed. Around 3pm, it was time for my Spinal Tap. And this Tap came with a kicker: chemotherapy! So, not only were they going to insert a big-ass needle near my spine to withdraw some fluid, they were going to give me some chemo in that very same area. Overall, that process was virutally painless. I could feel pressures in certain areas, the needle moving around and things liket that, but it didn't really hurt at all. Once that was over, I just had to lay in the same position for an hour to stabilize my spinal fluid and to alleviate any other side effects.

I'm still getting night-sweats...ugh.

But I'm kicking the crap out of this Leukemia. It's time for you to be gone. It's time for you to leave. You're being eradicated....

...and resistance is futile.

Day 4: The Fire Inside

Most police officers carry tasers, right? Well, I did hear somewhere that part of the training involved with them carrying tasers is that the officer carrying it must get tasered themselves so that they understand the full impact behind the weapon, before using it on someone else. What a freakin' concept. I'll get back to that in a second.

Today started with the completion of yet another blood transfusion. Only one unit this time though. Around 11:20, the herd of doctors came into my room ready to do the bone marrow biopsy. Let me explain this process in short...

...First off, you're laying on your stomach and they numb the skin area around one of your hips using Novocaine. Then, they insert about a 3/16" diameter needle through your skin, which has what appears to be a garden hose valve handle on the other end. Once they hit the bone with this bugger, they begin twirling the handle, hoping it drills into the bone, extracting a cylindrical piece of bone marrow. Usually, they do this process twice to get two pieces of marrow for separate tests. So, needless to say, this process isn't exactly a frakkin' cakewalk!

Now...this is, as they say, where the plot thickens...

Imagine having this process done on you, but with an In-Resident doctor with little, to no experience! When the process goes well, with a doctor that knows what they're doing, the process is just uncomfortable, NOT, OH MY GOD, SOMEONE JUST REMOVED MY PELVIS, LIT IT ON FIRE, PLAYED CATCH WITH IT, AND THEN PUT IT BACK IN MY BODY. The doctor unfortunately had to do this process 4 times.

Understand my point about the taser now? All doctors should have this performed ON THEM BEFORE PERFORMING IT ON SOMEONE ELSE.

A few hours later, I'm higher than a kite on pain meds, and being in my hospital bed feels like being in a warm fish bowl swimming around with people banging on the glass outside.

*bang*
*bang*
*bang*

'Are you in there?!!!'
'Go away...far away.'

Sometime later, I'm still slightly buzzing when the nurses tell me, 'your chemotherapy is coming right up!'

Oh goody.

Meanwhile, it looks like my pelvis was shot with a bee-bee gun.

(And for the record, I didn't know any of this until I was finished...because with me being on my stomach, I simply couldn't see.)

The chemotherapy was a breeze. Went in through my IV, no big deal. I have no nausea, or other side effects that I'm aware of, currently. I'm sure that will change, but my hip is easily suffering the 2nd most painful after-effects in my natural life. I won't mention the worst pain I've ever felt. Those that know me, know what that is. But, if you're just dying to know, do a Google search for 'testicular torsion.' Yeah...wowser.

Footnote:
Apparently, a few people were a little concerned that I was actually serious in my last post about needing monetary donations. Just so there's no confusion, we don't need money! If you want to send us something monetary to quell your desire to reach into your wallet, send us iTunes Gift Cards. Otherwise, cards are just fine...really.

Day 3: Doctors Can't Agree; Tidings Arrive

I have pneumonia. Nope...wait. No, I don't have pneumonia. Uh-huh, wait for it...yes you do! Holy crap, would someone please make a decision for frak's sakes? For those that don't know, I did have pneumonia 2 weeks ago. However, before being released from South Bend, they told me it was gone. Now that I've arrived here in Chicago and have been given a chest x-ray, there's one doctor convinced I still have it, while the others don't agree. So, the jury is still out on that one, but suffice to say, at least they all agree I have Leukemia! Whew. I guess here in Chicago they attack backwards, you know? They agree on the BIG stuff up front, and squabble over the little stuff afterwards.

Doctor #1: 'He's got a broken neck!'
Doctor #2: 'By golly, you're right!'
Doctor #1: 'And he's got pink eye too.'
Doctor #2: 'No, silly rabbit, he just poked himself there.'
Doctor #1: 'No, I'm sure. It's pink eye!'

*blows head off*

So, like I said, the jury is still out on that one.

Moving on.

It's looking like to tomorrow is the big day when the ball actually starts rolling. I've been told they're going to give me my Borg-implant in my chest, which is the port where the chemotherapy will be given, among other things. I will be getting another bone marrow biopsy done as well. Yay. Love those things. Nothing beats having a sore booty for 3 days.

Jenna, Justin and Amber came up to visit me today. It was nice to see them. My sister will be tissue tested for a bone marrow match probably sometime in the next week or two. I've been told that parents can have a 1% chance of matching, while siblings have a 25% chance of a match. And the rest of the world is just kind of...well, sometimes you get lucky, sometimes you don't.

Thank you Kiely for the wonderful care package! She sent me various photographs of us, a Nerf basketball hoop with ball of course, a fleece blanket, a deck of cards, and Sudoku books for my wife. (Kiely is my sister's roommate.) Thank you Kiely!

Having mentioned gifts, for anyone wanting to send a card or maybe a few hundred million dollars, my address here at the hospital is:

Jonathon Rose
Room# TN674
University of Chicago Hospitals
5841 S. Maryland Avenue
Chicago, IL 60637-1470

Please do not send fresh fruit or flowers as they are not allowed in my hospital room for fear of infection. (But money will still be gladly accepted.)