Tue, 27 Jul 2004

Sequel to Continue

Howdy - It's Tues morning and I have gotten a couple emails from people who have received the picture of us but were unable to get the text from last night's email. So, here is the text of the email without the picture. I apologize for the size of the picture - - I thought I had resized it smaller than it was. I'll make it smaller next time. For those of you who got the original email including text......sorry for the duplication.

Take care..................
Love..................Tanya
Hey there. It's Monday night and Jade and I spent all day at Huntsman Cancer Institute (HCI). He had an oncology appt with Dr. Albritton (our last one before she leaves for Boston) and then chemo afterwards.

A little background on how last week was: Awful. Terrible. Miserable. One of the side effects of the irinotecan (chemo) is diarrhea. They have patients take Immodium AD like every two hours to help control it. Jade had a 24 hour period where he was following HCI's guidelines for controlling the diarrhea and took 12-14 pills and it didn't have any effect at all. It actually was getting worse the wknd after chemo and last Mon and Tues. By Tues morning Jade was starting to wonder if the tumors were causing a blockage. He went to HCI and had an abdominal x-ray which showed a gas pocket forming, showing a blockage but they weren't sure what it was due to. He had a CT scan on Thurs but because of the state holiday (Pioneer Day) in Utah last Fri we weren't able to know results until this morning. Jade has been on a liquid diet until the past couple days. (It's actually called a "heavy" liquid diet.) With all the digestive problems, he's been eating popsicles, Gatorade, ice cream and a couple pieces of toast during the week. He has been trying to eat since Sat though and it's gone ok - - up and down - - but ok.
Dr. Albritton informed us the tumors didn't grow at all with the chemo. Great news. Jade actually went one week extra in-between chemo rounds due to all the fights dealing with insurance covering the chemo costs or not. So, we're thinking they may have even grown with that extra week and possibly shrunk back to their "original size." Whether there was shrinkage or simply no growth, it was great news. Dr. Albritton wants Jade to do two more rounds of this chemo (he started today in fact) and then do surgery to de-bulk the tumors. So that would give us six weeks for chemo and surgery about the end of Sept. We have a consultation with our surgeon on Fri so we'll get her opinion too.
We are going to have a new oncologist at HCI when Dr. Albritton leaves but we talked with her about flying back periodically to meet with her as we reach major decision points in Jade's treatment. So, basically she's given us a good road map for the next two to three months and if we need to consult with her we can go back and get another game plan or regroup if or as things change. We'll being seeing an oncologist who deals with lymphoma until HCI gets an oncologist who specializes in sarcomas. Oh, the joys of having freak cancer. Cancer itself isn't bad enough.....we get to have freak cancer.
Last Tues Jade and I were really quite low. It was quite somber and teary here at our house wondering if this was a sign of what was to come in the next few months. He wasn't sleeping and was quite uncomfortable. As I was carrying laundry down the hall I saw a car parked in front of our house and looked out the peek hole in time to see a friend of ours walking to the porch. He said he had been thinking of us all morning, couldn't get us out of his head and wondered if we were ok. I said, "No. We're really not ok today. Thanks for coming our." We spent the next couple hours talking and by the time he left we were so comforted and had amazing peace individually and in our home again.
While we spent today at HCI, I had a couple books with me to read. One was a Louis L'Amour. I was reading the foreword describing life in the early days of the west which states, "Stories of the frontier are exciting because they are about dyanmic people, the ones who have been through the mill. The men and women who arrived in the west were survivors, they had to be. And they had to continue to survive."
I sat and thought of this concept of surviving and continuing to survive. Jade and I have reminisced quite a bit this past week since it is the one year anniversary (22 July 2003) of him going into LDS Hospital for his marrow-oblative chemo and the start of his bone marrow transplant. I think back to surviving that experience and how ironic it is that we are having to continue to survive now. (By the way, it's a good thing I don't have a crystal ball. I couldn't have coped last year knowing what we'd be facing this July. Makes me nervous to think of July of 2005. Sigh.)
I am quick to recognize though the individuals who help us continue to survive. While I certainly feel like Boo Radley at times (see "To Kill A Mockingbird" for further explanation if necessary), Jade and I don't exist in a vacuum. Friends showing up on your porch on a Tues morning out of the blue are the critical moments which help you continue to survive. Sweet emails from friends, family members, co-workers and neighbors help us continue to survive. We are always impressed with how others cope and continue to survive their various challenges as well. We get inspiration from observing your strength and courage.
So, I think all in all today we got the best news we could have (given the parameters of having freak cancer.) We'll see how chemo goes this week and next (it's a two weeks on, one week off regimen.) Oh, I've attached a photo of the three of us from my family reunion a few weeks ago, the night we did pictures. Garrett is growing up so fast! Changes every day.
Thank you for your love and continued support. Enjoy summer. We certainly are eating our share of popsicles, otter pops and ice cream. Take care..............
Love ya'................................Tanya and co.