Thursday, June 18, 2009

Long-ass day... hell! one long-ass week!

It's 1 am, Thursday. I should be in bed. I will go as soon as I finish this.

Well, our trip to and from Indiana, PA and our time there went well. The kids were all kept pretty busy and I rarely saw Dani for more than a minute. The hardest part was when our cell phones went down on Monday morning (did you know that Verizon will call you at 7:30 am if you don't pay your bill? not cool at all, Verizon!). We weren't able to contact each other make plans to meet up for anything.

Living in a college dorm might be fun for 18 year old kids but it sucks for 53 year old women (at least this 53 year old woman!) A single bed with a bad mattress (I sleep in a queen) I did not sleep well at all. I'll give the food a C. It was OK, not great. Burger King would have been fine.

I met some nice ladies from across the state of Pennsylvania. I even met a few who live in my neck of the woods! Funny... I hung with a group of ladies from Erie, PA and Dani hung out with a group of kids from Erie. The kids shared dorm rooms, to get a taste of what it's like living with a complete stranger, but the parents didn't have to share rooms. Dani liked her crew.

So I get home Tuesday evening at 10 pm. Check the mail (YAY! support check!), take a leak and get back in the car to drive to John's, which is nearly an hour drive. Finally get a decent night's sleep, but I could have used more. We had to be up by 7:30 to get ready to drive to Philly for John's chemo treatment.

This is where the long ass day comes in.

We arrive at UPenn Hospital at 9:30 (30 min early!). John gets his blood drawn, then he goes to another room for his vitals and has a consult with his doctor.
Then we have to go across the street to another part of the hospital for his CT scan but it's not for another 3 hours. Fortunately, there's a bridge that connects the 2 parts of the hospital and we don't have to go outside at all.

So we head over to Potbelly's for lunch for me (he can't eat because he has to fast for his CT scan). Good sandwiches at Potbelly's!! Then it's back inside to wait for his turn.

He goes in (the CT scan takes about an hour) Now it's time to check in because they are admitting him for 3 days. Apparently they do this chemo in 3 parts over a 3 day period. I'll post a link at the bottom is anyone wants to read what kind of chemo he's getting and all the fun things it can do to him.

Before he checks in, he wants to eat, so it's back to Potbelly's for his lunch!
Before we get John checked in, we snag a wheelchair and go down to the parking garage and retrieve all his stuff he's bringing with him. We used the wheelchair like a hand cart! Folks thought that was very clever! (my idea!!)

So finally he does the check-in routine and it takes a little while but not long. We go up to his room and he changes and the nurses come in and chat and take vitals and start IVs. By this time it's dinner time.

His room is very nice! He has a roommate, but it's obvious from the decor that this was a single private room, once upon a time. This room looked more like a hotel room! An abundance of chairs, 2 TVs, an armoir for stuff and a TV, cherry cabinetry. There is even a loveseat/sofabed in case a loved one wants to stay over!

The nurse practioner comes in and they go over a bunch of stuff, then a little later, a doctor comes in and has a chat. Everyone is very very nice!!!!!! They explain in great detail what is going to happen, what may happen and how to deal with it.

This hospital is like no other I've ever dealt with! There is no "Oh, the lab is closed, so we're going to start your chemo tomorrow"... No, no no!!! "Mr. Russo, your chemo will be up in a few hours and we'll get you started." This place runs 24/7 like it's day shift! The entire floor is chemo patients. Each patient has his own nurse.

At 10 pm, his chemo wasn't upstairs yet and I was exhausted! So I had to leave him there and drive home. I had one hell of a time trying to figure out how to work the machine where you pay for your parking! Finally got it figured out!

OH! I talked to someone about getting passes and was told you can buy a book of tickets for parking (50 tickets for $80 and 25 tickets for $40) So I go upstairs to find out how to pay for it, and am told this program is stopping on July 1, but the hospital is starting a new program on their own (I guess there's a company that runs their parking garages). So she suggested I come back tomorrow, during the day and get the correct info, which I will do. My parking today was $10. I can't pay that every night, plus gas! So for this time around I'm paying as I go. But for the next 4 day stay and especially the month stay, I need help!

The folks at the hospital have already been in contact with the Leukemia and Lymphoma Society about giving him a grant to help pay some bills. They're also seeing if he can get short term disability. If they can do that, it would help so much!!! He's using his vacation time for this month-long stay.

I sent John a text message when I got home to let him know I arrived home safe and sound but I had not heard back. Either he was alseep or they were finally giving him his Rituxan.

So that's what's happening now. I'm going to bed! My ass is dragging!


Lilly said...

All I can say Joanie is wow. Its a damn good thing you are a strong, capable kick ass kind of gal because that must have been one hell of a trip. Get as much rest as you can and my thoughts and prayers are with both John and you. The hospital sounds fantastic and I am sure John is in the best hands possible by the sounds of things. Take care of yourself though as it will be tiring.

♥ Braja said...

Damn, I'm with Lilly....and maybe John didn't call you back cos Verizon was screwin' around again :)

I hope that pension comes thru, and if not tell us and we'll do a drive for you. Seriously. Tell me....

Maureen at IslandRoar said...

Wow, they sure don't make anything easy; do they?

Joanie M said...

John must have been asleep when I sent the text last night. We talked briefly this morning. The Rituxan made him real itchy last night, but the Benadryl took care of that. He got sleep, but of course it was interrupted by having vitals checked and going to the potty (they're really pushing fluids via IV). So far he's feeling pretty good. The doctor who was on last night told him any nausea and you-know-what would start on Friday just as the treatment is ending (you know, just when you think you got through the treatment with no side effects, it hits you)
I'll be going over there after work tonight.
Thanks for the good wishes! I am absolutely floored by the generous suggestion of help! What a fantastic group of people we have here! I <3 you all!

Anonymous said...

If the blogosphere can save Braja and Jahnu's life, we can all help you out.

Take care of yourself along the way, John needs you to stay healthy.

As always, thinking about you.

Peggy said...


You sound like such a great multi tasker and that's just what John needs at thie time. I have been recently diagnosed with Leukemia and have all this maybe to look forward to! Bless you both abd i will keep you in my thoughts and prayers!

Beth said...

You sound amazingly strong and John is lucky to have you. You guys are in my thoughts and prayers.

CK Lunchbox said...

We're praying for you and your husband Joanie. I know it's not much consolation, but it's sincere.

Pseudonymous High School Teacher said...

You and John are in my thoughts and prayers. Take care Jaonie and get lots of rest.

only a movie said...

Have not been here in a while. Hope you can get some rest soon and thoughts are with your John.

Michel said...

I'm soo sorry to hear about your situation. Your family is in my thoughts and prayers.

Vodka Mom said...

Joanie- I am sending you guys a TON of prayers.

and some love..........

WhisperingWriter said...

Joanie, your family is in my thoughts for sure.

And shame on Verizon for calling that early. Sheesh. We have Verizon so that makes me a little nervous.

Janie at Sounding Forth said...

Hey, girl. Know I'm praying for y'all.

I've missed "seeing" you but I've been all tied up in my own shit. Which doesn't even compare to yours - so I ask you to forgive me for that introspection.

I love ya!

darsden said...

wow ... what an ordeal!...hugs and prayers !!!

Ann's Rants said...

Stay strong. Or have a breakdown if it feels good for a minute.

Then dust yourself off and watch one of your daughter's videos, or make them sing to you over the phone.

Just keep breathing slowly and deeply.

Petra a.k.a The Wise (*Young*) Mommy said...

Man, sounds crazy. Hang in there because I know it is a long road! My thoughts and prayers are with you guys!

giantspeckledchihuahua said...

Hi Joanie, stopping in to wish you good things and better days. Repeat after me and keep repeating until it works its magic...

"....and this, too, shall pass...and this too shall pass…and this too shall pass…and this too shall pass…and this too shall pass…and this too shall pass…and this too shall pass…"

keep going....
"...and this too shall pass…and this too shall pass…and this too shall pass…and this too shall pass…and this too shall pass…"

are we there yet?

Joanie M said...

Wow! I have never such an outpouring of love and concern for me (and by extension, John)! I am absolutely overwhelmed! I can barely see what I'm typing through the tears.

Lilly, this hospital IS fantastic! UPenn is ranked in the top 10 hospitals in the country for cancer treatment.

Braja, you are, without a doubt, one of the most special people I have ever had the honor of knowing.
I hope, one day, to meet you in person. I love you.

Maureen, John's first round of chemo, 2 years ago, was a walk in the park compared to what this is going to be like.

Lisa, I'm doing the best I can to stay healthy. With eating on the run, I'm either going to lose some of the weight or gain a bunch! I'll try to get rest also. I know I have along summer ahead of me.

Peggy, I'm sorry for your diagnosis. I hope your treatment is successful! It's so kind that you can take time to remember us in your prayers when you're going through a stressful time yourself. Good luck with your chemo and I'll pray for you also.

Beth, I hope I can remain strong! Thanks for the prayers... always needed and always accepted!

Ron, prayer are ALWAYS gratefully accepted!

Pseudo, thanks for the good thoughts and prayers. I'll work on that rest thing.

Movie, Lots of folks reminding me to get rest (don't look at the time I post this) I'll do what I can. It may take a while though!

Michel, thanks for the concern and good thoughts!

Vodka, just keep making me laugh every day.... no pressure though!

Whisper, thank you so much!

Janie, no apology necessary!! You have so much going on all the time, I'm amazed you get any time to blog! Thanks for the prayers!

Darsden, thanks for the much needed hugs and prayers! I think of you every time I drive to John's apartment. I pass a street named Darden Drive. really!

Ann, I'll have that breakdown when John is home, after the transplant, around Labor Day. Just remind me later, ok?

Petra, it IS crazy! And it IS a long road! Thanks so much for the thoughts and prayers!

chicuahuah, "and this, too, shall pass, and this, too, shall pass.." That will be my mantra for the summer. thank you.

Pastor Sharon said...

Joanie, my favorite portion of a bible verse is, "and it came to pass". That to me means it didn't come to stay!
You guys are definitely in my prayers!
What kind of support system do you have in place for yourself there in PA? Family, friends, etc....

zelzee said...

I am sending tons and tons of prayers and positive thoughts your way!

I have a good friend going through chemo for lymphoma right now and getting his treatments here in Erie. I am also a cancer survivor (recently) and know how difficult this road can be.

Stay positive. Sounds like you have alot of support and love!

The Good Cook said...

You and John are in my thoughts and prayers. Our 10 year old nephew was just diagnosed with cancer and had his first chemo treatment 2 weeks ago. Every 3 weeks, the 3 day drip.

Cancer Sucks.
You Rock.

God Bless.

ps. I'm an original Pennsylvania Girl. I heart PA.