Monday, June 22, 2009

The End of Round One!

Well, round one of chemotherapy is finished. For a few days, it looked like John wasn't going to show any signs of what he'd just been through. We were told that just as his chemo was ending, the nausea and vomiting could start. That didn't happen. And we celebrated.

John was released from UPenn Hospital at 10 pm Friday night, after undergoing chemo for nearly 48 hours straight. The meds they were giving him to ward off possible side effects seemed to be doing their job. We arrived home around midnight, grabbed a sandwich and headed off to bed.

We woke on Saturday morning and John was feeling terrific! I dropped him off at the car dealer to pick up his car (he got brakes while he was in the hospital) and I went to work. He got his car, went to the store, got a few things. He went home and watched a movie or two, took a little nap, while waiting for me to get back from work.

I arrived back at John's around 5:30 and I was exhausted! We decided to watch a movie before getting dinner and I just zonked!!! I think I slept for 30 minutes or so. Then we went to Fridays for dinner (I get a 50% discount, so we eat there once in a while). For John's neutropenic diet, he has to make sure all his food is cooked.. nothing raw, like fruits and veggies. I woke up in the middle of the night last night with the realization that he had lemon in his iced tea! We'll get that all down pat soon enough.

After dinner, we popped over at the mall, which was right next door and I bought John a blender for Father's Day so he could make his own milkshakes with no sugar added ice cream, sugar-free vanilla syrup. Then a quick stop at the grocery store for, you guessed it, milkshake ingredients!

Back to John's and I washed the blender really well and made us some shakes (they were good!) We finished watching the movie I fell asleep watching earlier (believe it or not, we watched The Tale of Despereaux!) After that we hit the sack.

Today (Sunday) was an entirely different story!

John woke up this morning, completely bathed in a cold sweat! I could ring his side of the sheets out they were so wet. So into the tub he went, with his new PICC line covered with Saran wrap to keep it dry. The PICC line is sort of a permanent IV line implanted in his arm. He'll get all his chemo through the line, and they can draw blood from there. He has to keep it dry and is afraid to shower with it (He needs to get used to it because he's going to have this in his arm until at least September! Men are such babies sometimes!)

I haven't given anyone a bath since Dani was about 6 years old. This was interesting, to say the least. Too bad he felt so crappy... could have been fun! ahem.... anyway, I wash his hair and get the rest of him clean and he finally stopped sweating. I changed the sheets and got 2 sets washed just in case this becomes a daily event.

His appetite is crap, but I've been able to make him eat some things, but he's only taking very small amounts. Our plan today was to go to the library and get online for an hour or so, since John doesn't have internet access at his apartment (grrrr). Between feeling like crap and being completely exhausted, we had to wait for a delivery of medical supplies and then a visiting nurse to teach John and me how to flush his PICC lines out. Needless to say, those plans went right out the window (which is also why I'm typing in the middle of the night).

Poor John felt like a limp dishrag and all he wanted to do is sleep. It's difficult to make him get up and move around. He has to fight off some of the fatigue. I know it's difficult but if he doesn't, it will just get worse.

He did take a 3 hour nap earlier this evening and I snuck out to Burger King to get online, but the connection was lousy. I told him I was going to do it and he sort of pouted but slept the entire time I was gone and for 2 hours after I got home. I did check in on him every 30 minutes or so. For the record, I only bought a diet coke!

Finally, near 10 pm he came back into the living room with me and watched SVU before I had to leave to come home (I do have to drop in here from time to time since I have an 18 year old still living here for the next 2 months anyway)

After work tomorrow, it's back to John's to pick him up and drive him to Philly to the hospital to get his Nulasta shot. John got this shot when he went through chemo 2 years ago and had to get a shot after each treatment and he got 7 treatments. The nulasta shot is $7,000 each! Thank God his insurance covers it!!! I'll probably stay overnight again and go to work on Tuesday. Then it's back to his place on Wednesday for another overnight.

He needs to get blood drawn every Monday and Thursday. Fortunately, where he works, there is an Infirmary and the nurse, Deb who works there (and it completely awesome!) does it for him and sends it out to Quest Diagnostic and his work pays for it! (not sure if his work knows they pay for it since a lot of blood work goes out on a daily basis) He's a receptionist/security guard at a big Chemical Company and they have to test their employees often.

So that's where we are now. John was originally planning to go to work tomorrow, but he felt so exhausted today, he talked to his boss and will stay home instead. He'll know for the next month when he gets his 2nd round of chemo.

Well, I am going to head up to bed. I don't have to be at work until 11 tomorrow, so even though it's 2 am right now, I'll still be able to get 7 or maybe even 8 hours of sleep tonight.

OH! My fabulous wonderful beautiful daughter, Gina aka The Recovering Actor
knitted John a chemo cap to wear when his hair falls out and he needs to keep his head warm while he's in the hospital, and when we go the movies or restaurants where it's usually rather cool. Since John's retired military (20 years in the Army, most with the 82nd Airborne Division) Gina made it in Camo colors (tan, olive green and darker green and white). I can't wait to give it to him tomorrow (although I'll have to wash it before he wears it... we have about a week before he needs it, so I should have enough time to get it washed) I think she's awesome!


Sharon Rose said...

You are doing a wonderful job, being the loving caregiver that you are. I am so sorry John has become sick from this round of Chemo.
Are you taking time to take care of you?

The Panic Room said...

Echoing what Sharon said, be sure to take care of yourself in good ways so that you can continue the support you are giving. Sending you both strength and good vibes into the universe.

Wonderful World of Weiners said...

Keeping the prayers heading your way.


Eternal Lizdom said...

You are such a strong woman, Joanie. A saint!!

Daria said...

John is so fortunate to have you in his life ... it's a difficulty journey and he needs support.

Remember to take care of yourself too.

Joanie said...

Ah, taking care of me.... that's a tricky one. I'm really trying not to burn the candle at both ends, but it's difficult sometimes.

John is so funny! Every time we meet a new person (nurse, an aide, etc.) he tells them how, when he first was diagnosed, not long after we started dating, I told him I wouldn't bail on him and how we've been fighting this together for 2 years now (we were dating nearly a year when he was diagnosed). Then, when they mistakenly assume I'm his wife, he tells everyone that if he can talk me into it, he would make me his wife! LOL I just smile and say maybe someday.

Anonymous said...

Amazing...and your unselfishness will come back to you ten-fold. Sending you positive thoughts and energy.

Unknown said...

Love the chemo cap idea. We need a photo!


Joanie said...

Garret, I will definitely get a picture of John with the chemo cap! I actually took pictures a few weeks ago... before shots. He's one very hairy dude (typical Italian male... hairy front, back, shoulders!) I imagine it won't be more than a week before I can take some hairless pictures.

IB said...

Hang tough, Joanie. You are a rock. John's a lucky guy to have you in his life.

Best wishes for you both

Julia@SometimesLucid said...

Your character as a person really shines through, through these updates. John is very lucky to have you. I wish him, and you, lots of luck and well wishes through this difficult time.

Pseudo said...

You are an amazing person Joanie. You and John are in my thoughts and prayers. Echoing the others, please take good care of yourself.

Sprite's Keeper said...

Adding my words and prayers and hope the sickness ebbs quickly. Hang in there Joanie and John! We're rooting for you!

Candy's daily Dandy said...

I think you are pertty awesome too!!

My prayers are with you both and together you will beat this. I know you will.

Kat said...

John is such a lucky man to have you as his caretaker. I am sure he will pull through this just fine with you there to nurse him. Keeping you both in my prayers.

Lilly said...

All the best to you and John Joanie. You make a great team. And your daughter is a gorgeous caring girl like her Mom.