The Whole Story

OK, I have had a nap, Johnny is settled in bed (probably for the night) and I finally feel like I have the time to fill you all in on the details of yesterday.

We arrived at the hospital at 5:30 and completed the registration process in less than 10 minutes. We were in pre-op by 5:45 and finished with all the preparations by 6:30, which included shaving what was left of the hair on his cute little belly.

The anesthesiologist came in to talk about the options available to Johnny. Let me just stop right here for a minute and say that: OMG! The anesthesiologist looked like he had just walked in from a photo shoot for the “Men of Anesthesia Calendar”. He looked to be about 25, and hotter than a 2-dollar pistol. Ladies between the ages of 19 and 25, his name is Ryan Miller. Holy Wah!

But I digress . . .

The options for anesthesia included an epidural for long-term pain management which sounded like a really great option. He said that for surgeries of this magnitude he likes to have the epidural in because it makes the first couple of days post-op so much more manageable. In addition to the epidural, he also has a Morphine PCA pump (the little button that he can push when he needs it).

Next, the senior surgical resident came in, Dr. Kyle Yancey. Nice guy. He is going to do well in medicine. One of the best bedside manners EVER! He asked Johnny what his understanding of the procedure was and then filled in any of the blanks that Johnny needed filled in. He was very thorough in his explanation without speaking down to us.

Dr. House then came in to complete the process and gave us the risks and benefits speech. We felt very confident again speaking with him and his confidence of the procedure and its outcome possibilities was comforting.

At 7:30 on the dot (No, I’m serious -- ON THE DOT!) the surgical tech came in and took Johnny back to surgery. I kissed him and managed not to cry (in front of him :o}) and then went to stake our claim on some real estate in the waiting room.

IU hospital has this really cool position . . . they have an RN whose job it is to round through each surgical suite and then come to the waiting room and report to each family. She does this every 60 - 90 minutes. It was wonderful, and made the time pass a bit more quickly, I think.

At 8:30 she came out and told us that they had made the initial incision and had started on the colon part of the surgery. At 10:00-ish, she reported that things were going smoothly, Johnny was stable and comfortable and they were working towards the gall bladder and lymph nodes. Sometime after 12 or 12:30 she reported that they had started work on the liver, removing some of the tumors for biopsy and evaluation. By 2:00 the report was that they had placed the Hepatic Artery Infusion (HAI) pump and would begin closing in 30 minutes or so. The 3:30 report was that they were closing and should be done shortly. At 4 they took us to the consultation room and Dr. House came in to give us the break down of the operation.

Here is the break down by part:

Colon: The removal of the section went great. He said that the tattooing made his job easy and the lesion easy to identify. He could feel a small nodule left in the mucosa of the bowel (approximately the size of an M&M) and it was probably the remnant of the primary tumor. Removed a few lymph nodes for study, but said that they looked “clean” and doesn’t expect to have any negative feedback from that. The end-to-end connection went together nicely and he doesn’t expect there to be any trouble from that. He will not be able to eat until Thursday at the earliest, but did drink quite a bit of water today. He enjoyed that a lot.

Gall bladder: Came out without a hitch. Nothing exciting to say about that.

Lymph nodes around the liver: Removed just to make sure nothing is traveling to other exciting destinations.

Liver: Ok, well here is where things take a little turn off “Every Thing is Perfect” Road. The tumors have continued to grow even since his CT scan here in January. There are about 10 tumors that range in size from 1 inch to golfball-size. In addition to these 10, there are “innumerable” lesions the size of peppercorns littered throughout the entire liver. According to Dr. House, this does not change our plan. In his words, “This is the right treatment at the right time.” He is still confident and still stands by his 60-70% response rate with this treatment. He would like to start chemo within 3 weeks of us getting home to start combating these obviously aggressive tumors. The news was overwhelming, but I have to say not altogether unexpected. I just had a feeling that these lesions were pissed off and were going to try to do a lot more damage in the little time they had left before we got to them.

The plan remains the same. The hope is that the infusion pump and the new chemo along with the systemic chemo will work its magic and knock out the lesions in the liver. Keeping in mind, they consider Johnny a “responder”. Since the chemo worked so well on the colon, we have every reason to believe that the correct chemo for the liver and through the pump will work equally as well. It just has to.

Ginger happened to ask Dr. House if he could even guess as to how long the cancer had been growing. He said that his best guess, with the obvious aggressiveness of the liver lesions and the size of the colon mass, was approximately one year before his initial diagnosis (July).

Johnny was in recovery for almost 4 hours, not because he was having trouble, but just like most hospitals, they were waiting on a room for him and then they had to wait on a nurse to arrive to take care of him. The girls in recovery were apologetic, but when I told them I knew the deal and that I understood, they let me spend another 5 minutes or so with Johnny. See, it pays to be nice!

Incidentally, his primary nurse in recovery, Liz, reminded me soooo much of my little friend, Jenny McKimmey! HI, SPUNK!! She was tiny and spunky and had glasses and moved and talked just like Jen. Silly as it may seem, it was comforting!

At about 8:30 or so last night they got him into his room (Room 5842) and once he was settled, I forced Ginger to go back to the hotel to get a good night’s sleep. I stayed with Johnny and took little naps through the night when he did. They provided us with a relatively comfortable pull out bed and I pulled it right up beside Johnny. I put the side rail of his bed down and we could hold hands all night long. He had trouble getting comfortable, and each time he wanted to change position required removing all of the sheets and blankets, monitoring the multitude of wires, tubes and catheters and finally getting settled. That usually lasted about 20 minutes and we would repeat the process all over again. Around 4 a.m. he slept for almost an hour and a half straight, and then the resident’s and other staff started in for the day.

He was able to sit up in a chair twice today, the first time was for 60 minutes and the second time was 90 minutes. Colleen, his nurse, was super impressed with him for even trying 90 minutes the second time.

So, here we are at 9 p.m. on Tuesday and he is gearing up for the second night. Tonight Ginger will send me back to the hotel to sleep and she will serve as night watchman for our Johnny. In the morning we will perform the changing of the guard and we will start the process all over again. It is nice to have Ginger here to share this with. There is no one else that would be able to do this with me (and for Johnny) on the entire earth!

Lots of you want to come visit, but I’m not sure when that will be feasible. Before planning your visit, please call. I would love to have you all stop by, but not at the expense of Johnny’s recovery. And I know each one of you understand.

Now for a couple shout outs:

To Mom and Dad: Thanks for being here for Johnny’s surgery. It was so comforting to have you here. I also want you to know that I appreciate all you do to make things easier on the boys. I love you so much.

To my sisters (and brothers-in-law): Thanks for making this easy on me by being my boys' other mothers. I know I can count on all of you to make this tough time easier on the boys. I couldn't do this without you, and I mean that from the very bottom of my heart. Love you Angie, Alan, Carla, Rob, and of course, Griffin!

To Aunt Barb: Thanks so much for the snacks, fruit, and beverages that you sent down with us. It so totally got us through the day yesterday and today as well. Lots of good stuff! Also, thanks for the meal for the boys and Carla, Robert and Griffin yesterday. They loved it, and Johnny and I appreciate it more than you could possibly know. Love from all of us!

Sonya: Love, love, love the puppy chow and everything else you sent down. The book has lots of lovely inspiration that I have found incredibly comforting. “Don’t fear tomorrow, God is already there.” I love you.

Linda (my other mother): Thanks for providing dinner for 1557 Harrah Road tonight. I know I can always count on you to be there for my family, for absolutely everything. I love you.

And to my FB Class of ‘85 Friends: You guys knocked my socks off! It was such a happy surprise to get a message from the front desk at the hotel saying I had a package. They brought it right up to me and the roses are absolutely gorgeous! I will be using the lovely bath products tonight when I go back to the hotel. Then, my kids call me screaming something about six pizzas from Chicago in dry ice. . . can we make bomb out of the dry ice, huh, Mom, huh?!?!?! They are so excited about the pizzas and are saving them for Friday night when they will watch the Winter Olympic Opening Ceremony. Sounds like they are planning a party and will be able to show off with their Authentic Chicago Pizza. I am just absolutely overwhelmed by you guys! Again I say, Facebook is AWESOME! Love to each one of you!