Monday, March 22, 2010

And now, back to the show . . . #3

Chemo again . . . Gah! Why does the time go so fast when you really want it to slow down and vice versa? Another of the great mysteries of the universe.

First, I have to tell you about the amazing weekend we had at the Korner Kottage Bed and Breakfast in Sutton’s Bay, Michigan. We were the guests of Jim and Linda Munro, owners and former Niles residents. Staying at the Korner Kottage was like going to your favorite relatives’ house and relaxing for the whole weekend. The kind of relative that means it when they say they want you to come visit and relax. The kind of relative that will have breakfast ready for you when you wake up, and a gourmet breakfast at that -- with the most awesome coffee machine on the planet. The kind of relative that is there for you if you need anything at all (like winery suggestions) but will let you do your own thing and sleep all day if that is what you choose to do. The kind of relative that has the best dog in the world (shout out to Nestle Quik!) that is sweet and friendly, but not over-the-top. The kind of relative that has all the really cool little details in every single room, and heaven-scented bed linens.  (We stayed in the Paris Room.) Yeah, it was just like that. Comfortable, warm, inviting, relaxing, amazing. And to top all that off, Sutton’s Bay is the sweetest little village. There are some great shops along the Main Street and a couple great restaurants, too. I can’t even tell you how many wineries there are in that area, but I know I counted at least 20 in the Leelanau Peninsula. We walked through town a couple times and ate at Gusto’s, an Italian restaurant within walking distance of the Kottage. (Think Pete’s Patio away from home) We also discovered a deli that had the absolute most spectacular smoked whitefish spread ever. Ever. Really.

If you have never had the pleasure of staying at a B&B, as we had not, put it on your MUST DO list. I think this may have just started a new hobby for us. It was so much more comfortable than any hotel we have ever stayed in and was so much more relaxing and enjoyable. The difference is in all the little details that a hotel just can’t provide. Really, if you are looking for a wonderful weekender for any occasion at all, call Linda and Jim. Seriously, call them. I’ll wait right here for you to get back to the blog.

Linda, we really missed seeing you, but Jim did an amazing job! We will definitely be back -- and sooner rather than later, I hope!

After our weekend away, it was really hard to think about starting up chemo again. Johnny had gained so much strength over the last week, that I didn’t want to see it drained away by the chemo, but we knew it had to be done and how important it really is.

His liver enzymes didn’t come down, but they didn’t go up, either. I think we have crested the summit and the labs will hopefully come down next time. They were 209, 298, 320 and today 321. I think we will start to see them come down, maybe not to where they need to be yet by next time but trending that direction. They have to be below 180 for them to fill the pump.

He did receive the systemic (port) chemo today and that was pretty rough. He was sick before we even left for home. He has been up and down since coming home, varying from sound asleep, vomiting, or singing old Alamo songs about Davy Crockett. I know, weird.

We had wonderful visits today at the infusion center. They have renamed the bed area that Johnny has been in the last three times as the Toad Lounge. My friend, Farid Jalinous (Dr. J), stopped in for a while, then Jeff Brawley and Tammy stopped in. Then a great surprise, Johnny’s chemo buddy from his first protocol, Carol, stopped in. She had her infusion with us in the Toad Lounge. It was so nice to see her and catch up with her; the last time we saw her was December 21st. I told Johnny just this morning that I had to email her because it had been a while, and I was thinking about her -- and there she was! Wonderful! Even my sister, Carla (HAPPY BIRTHDAY, BOOMER!), stopped in before we left. She works in that building for a pediatrician group.

So the day, although yucky for Johnny, went by very quickly. Ginger did manage to accomplish a good amount of crocheting, and I got some Kindling done. We asked for additional fluids again today, especially with him being sick so quickly. They were happy to give it to him. All of the nurses there are fabulous.

He is now in the tub and will go straight to bed when he is out. We have all of our “supplies” ready for the nighttime. Hopefully, his tummy will calm down and he will have it out of his system before going to sleep, rather than while he is trying to sleep. I hope, I hope, I hope.

Praying for a good night’s sleep, and liver enzymes that come down to an appropriate level. And for so much more.

HEY!  I just check on some of the comments from previous posts:  Dr. Yancey is that YOU that commented?  Oh, my gosh. . . how are you?  Are you eating properly?  Is anyone providing you with late evening snacks?  Are you taking care of all your minions?  We were so happy to see that you were checking on Johnny.  Incision is gorgeous!  And yes, there were 53 staples, to be exact.  Looks perfect!  Hope you are being appreciated appropriately by all the people you are helping. . . we certainly appreciated everything you did for us.  Take good care!

3 comments:

  1. Pammie and Toad and Jr. Toads-
    Glad to read about a soooo much deserved weekend away from cancer. I was so glad that the weather was without snow for your weekend jaunt!
    I am devoting my Toad prayers this whole week to strength, no projectile anything and proper direction for the liver enzymes (we'd prefer down, if you please).
    Pammie- I have been asked by the computer illiterate...er, I mean challenged, yeah challenged in my family (your Aunt Judy specifically) to let you know that she is also praying for you all and has her "ladies" at church praying like crazy too and most importantly.....she loves you!

    Okay, I'm off to read for a few before I call it a night!

    Love you all-
    Georgeann, Derek, Chad and Ryne Nolan

    P.S. We want to know if Johnny is losing eyelashes and brows? Ryne did and it freaked me out but they came back just fine, it seemed like it was about 70/30 with the kids at Riley. The blonde kids seemed to lose eyelashes, brows and keep a "ring" of hair around their hairline, while the dark haired kids were completely bald but most kept their brows and lashes. Clearly, you have more important things to discuss...when you have time, tho, we were just wonderin'.

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  2. Pee Wee,
    Johnny only lost body hair during his first protocol. The hair loss was really patchy on his legs, complete on his back, and almost complete on his chest. He didn't lose his eyelashes or eyebrows.

    He isn't supposed to lose his hair with this protocol at all. We have noticed a bit of new baby hair growth on his back and chest. It would have been ok with me if that hadn't grown back! :)

    Thanks for all the prayers!

    Love,
    Pammy

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  3. It's like ask.com over here....ryne wants to know lots of stuff so thanks for taking time to answer us!

    Remember that we love you!!!

    PeeWee and the crew

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