Our 16 year old son, Zack,(Zackman) was diagnosed with Ewings Sarcoma in June 2012. As a Senior in High School, his entire life changed. This blog follows the daily routine of chemotherapy and radiation, Home schooling, changes in lifestyle, friends,physical and emotional challenges. Join us on Our Journey in curing Ewings Sarcoma. (You are welcome to post comments , please be respectful!)
Saturday, May 18, 2013
"Crystal Clear"....so far
I spoke with my "aunt" Lee the other day and find that as I'm speaking, I realize the personal changes I have gone through in this past year. I knew this week was going to be a "heavy" week, full of tests to determine if the Ewings is still gone. I won't use the word remission. To me that gives "it" permission to return and we do not! I have become more of an observer (which is something I am still working on through counseling). I feel as if I have been inside a glass bubble looking at the world outside, everyone is talking, but all I hear are muffled sounds. I am slowly "coming back" as my mother refers to me, as if I've been gone on a long journey and returning. She is spot on! I find myself relaxing more as Zack can do more and continues on with his life.
Tuesday, Zack was scheduled for labs. I have been in this room a thousand times and never really notices the train table Zack was sitting on. I remember the "clock" room, but all of a sudden we are sitting there and I begin to laugh! Of course, he looks at me like I've lost my mind, but he simply smiles and lets me have my moment of crazy. We are told soon that his counts are great!! We are then given a whole new schedule regarding the tests. For some reason there has been more confusion at the front office. Luckily I didn't go completely crazy on everyone, as I found out later that Lena, who had gone to visit her mother, ended up losing her unexpectedly while there. My heart was so sad for her, I can't and don't even want to imagine what that would be like. You might as well wrap me up and throw me out!! We got our appointments all lined up and within an hour were on our way home.
My senses have been pretty sharp lately. If that doesn't make sense, just like in the very beginning of this journey when "something.. I call my Angel...told me to go back in to say goodnight to Zack (after already having done so before) and discovering the tumor. That sense has been very sharp of late. I knew, when we left the Cancer Center that "something" was going to happen and I needed to be aware! As we were driving out of town, traffic got backed up at a railroad track, I stopped a few yards away from the tracks when all of a sudden the train is there and a woman in a van was stuck right on the tracks! The arm (that was supposed to go down first to stop traffic) suddenly started to come down on her car. It caught onto her luggage rack and she couldn't back up. I motion for the man in back of me to back up more, so that I could give her even more room. She was stuck and the train was coming fast! I jumped out of the car, ran over to the arm, pulled it up as she backed her car to safety, I then discovered that another car in the other lane would be stuck with the arm on his car, so he moved until everyone was clear. I'm not sure if they would have been cleared by the train or not, but I wasn't going to take a chance. A few feet after we moved again, we were missed when a car ran the light and nearly hit us and two other cars. Stopping at the light, Zack looks over at me and says "Mom, you need me to drive?" It hit me, what all just happened. I have been so in survival mode, that I did all of that and didn't even realize what I was doing. I told him I was fine, but to keep his eyes open!
Wednesday was Senior "skip day". His friends joked with him that he "skipped" the entire year! But Zack wanted to be a part of it all. He told us all, "I haven't been able to do shit for school this year, I am going to hang out with my friends that skipped school and have a good time!" They all ended up going to Connestee Falls lake Atagahi and had a great time. Zack did return with a slight sunburn, but promised he wore sunscreen. It was nice to see him with a big smile on his face.
It is now Thursday and we are scheduled for MRI and Bone Scans. We arrive at the Cancer Center where they access Zack's port for the days scans. Once we are at the Hospital, Zack becomes angry. He THEN tells me that he wanted to have the MRI at the Reuter Center, where their machines are bigger and less closed in. I tell him that THIS is why he must communicate with me. I can't fix a problem if I don't know what he is feeling. He immediately reassures me and says he just hates these tests. "I have only had one MRI in my life and they had to drug me to do it, so you are a lot tougher than your Mama". He make some comment like "DUH" and we were again laughing. A very nice male technician came in and was all set to insert the iv, when Zack lifted his shirt and showed he was already "plugged in" and ready to go. I sat out in the hall for about an hour, when he phoned and asked for his clothes. Excited I thought we were all done. He looks at me and reminds me there are still bone scans and we must return in three hours. Since he hadn't eaten since midnight, we went and grabbed lunch. He tells me that he is feeling kind of tired and must drink a lot as they just injected him with radioactive dye. Something every mother wants to hear!! NOT!!! I push my thoughts to the side. I won't make it if I really think about everything he has had put in his system. I can't think about that!!
When we finish lunch, we still have two hours so I take him to one of my favorite places in Asheville, The Tobacco Barn. It is an old tobacco barn filled with booths of Antiques, Art and Furniture. If nothing else, it's like a museum and art gallery mixed in with a lot of dust from the old building. We stroll through one aisle at a time. Zack is in a great mood, the MRI wasn't as rough as he thought it would be and it was done fairly quickly. He picks up a spiral candleholder and ask what it is. (you really couldn't' tell), then a plainer, he shows me how that works, he is fascinated with the new, old and recycled items. He forgets he was raised in an Antique Shop. He is looking for an octopus. He is obsessed with them and the symbology doesn't go unnoticed. I think I mentioned in a previous blog, how some octopi can regrow limbs once the fall off. He thinks of his body as an octopus, it heals itself. What a great image to keep!! I firmly believe that is how he has been able to bounce back each time, he is thinking like a healthy person and why shouldn't he!! He finds a couple of things he would LOVE to have, but alas, no room and too much money. After previewing most of the contents of the store, it is time to head back for the bone scan.
We again arrive at the Hospital. I jokingly ask if he wants to run upstairs and say Hi to the nursing staff. He looks are me and says "Ah.... NO!!" Too early I guess. I just want them all to see how healthy he looks, but that's MY thing, being a Mom and all!! It's strange to see peoples expressions when Zack walks into a room. They look up at this big guy and all of a sudden their eyes are sad. There is an older couple in the corner and when they saw Zack, they immediately looked at me and managed a smile. When he was gone for his scan, the woman asked about him. I shared our journey and assured them he was doing great!! "So good to here, prayers are with you!" I thanked them. I hadn't realized how tired I was until I sat in the oversized chair with my feet up and fell asleep snoring up a storm. The television was so loud in the waiting area that no one heard me, or at least they were all polite enough to tell me they didn't. By 3:30 pm we were done for the day. I had decided to go back to work, where Jessica was covering for the day and close out everything. Zack desperately wanted and needed an adjustment, so we headed straight back home. After I dropped him off to pick up his truck to meet me at the office, I get a call from Angie at the Cancer Center. She said "Sabrina, the scans came back and not only are they clear, they are CRYSTAL CLEAR!!!" I am elated!!! I immediately call Frank and Mom to tell them the good news! We passed the first set of tests!! The MRI was of the area where the tumor had been, CRYSTAL CLEAR! I then meet Zack at the office and tell him the great news. I am standing with Nancy and Jessica as he looks at me and says "Ya, I knew that!!!" "Did Angie call you?", "No?! I just know Mom!!!" He is right, it is his body and he has become quite familiar with his own health this year. Once he is adjusted he heads out to his friends house. It isn't until later that I find out he hadn't even told them the news. They asked me and when I shared the news with Drake a day later, his eyes teared up a bit, "that's great news Mama!!"
Friday I was scheduled to donate platelets again. They have called me stating there was an extreme shortage. I had decided though, on Thursday, that I was just too tired of driving to Asheville and next week we would again be returning for the second set of scans. Echocardiogram, PET and CT scans are set for Tuesday and I have an appointment with my OB on Friday, so I postponed until then. Friday, was Senior Awards Day at the High School. All of the Seniors wore their caps and gowns and entering into the Auditorium in a procession, they all walked past all of the other classmates . Zack was able to participate and I so wanted to go and hide in a corner just witness it all myself, but it was for students only and Zack threatened to make my life miserable if I even attempted to show up. He knew he wasn't getting an award, but said that he wanted to be a part of the celebration. A couple of his friends were upset with the school and said he should have at least been recognized for having graduated in spite of everything he has gone through. Zack, being just like his Dad said "I don't care about that stuff, I know what I did, besides, I didn't want to have to get up from where I was sitting, I was in the middle of a bunch of other people and when you're as big as me, you don't move that easily!" He came home with his yearbook and said "darn, I only made it in the senior picture". When I asked why that bothered him (already knowing the answer) he said "because it is proof I wasn't there and shows on paper what all I missed out on." I noticed there were no signatures or notes from his classmates. He said "the people I am friends with, are still my friends and I don't want a book full of phony crap Mom!" Typical Zack, once he made that statement, he was again out the door to hang out with his friends.
Zack and Austin
This entire week, he has been going to a new friend (whom he met through mutual friends). This "kid" Tyler lives a couple of miles from our house, his parents have a lot of land and Zack and his friends go there to go 4 wheeling and sit around a bonfire. Each night, Zack has called or texted and asked if he could be just a little later. By the time he reached 11:30, we said last time!! Don't ask again!! Don't push it right now!! You still need to rest and heal. He is having such a good time and feeling so free, not having to go so often now, that he too is trying to find his way.
painted cabinets and new hardware
In my usual fashion, I took on repainting the kitchen cabinets and a few of the outer walls. Frank was the one that finally said I needed to take it easy today, after having painted all day yesterday and this morning. The results are wonderful though, and our house is becoming bright and new! I guess you could say I'm again nesting! I forgot to take before pics of the kitchen, but you get the idea. Before the cabinets were a pale, dirty looking yellow, now.... Voila!!!
painted two walls, and re caulked counter top
Tomorrow we pay homage to Frank's Aunt Jane who turned 70 this week. It will be nice to see the family and share in a little family reunion. Tuesday is just a couple of days away and once those scans are finished, Zack will move on with plans to register for Blue Ridge Community College automotive classes. Graduation is nearing as well, all I know is this particular mother is going to need an entire box of kleenex!!!