Thursday, October 4, 2012

I'll take my steak rare please....

Zack stayed home Wednesday, while Frank and I were able to put in full days at work.  He seems to be in a new routine. Texting me at lunch with the school work he completed, asking if that was enough. My response "go ahead and finish the next level of work so we have something to turn in tomorrow." was followed with an "OK".

He was pretty tired today, but forged through with is work. Frank returned home before me and called me to bring home a couple of steaks. He said Zack was quite pale and his energy was very low. I gladly accepted the challenge and not knowing what I was looking for asked the butcher for a couple of good steaks. When I returned home I was shocked at Zack's color, this is why he is having a double blood transfusion tomorrow. His hands, lips, and overall skin color was so pale he was iridescent. These are the times when it becomes hard. When you can physically see the change. His mood was good in spite of everything. Drake came by and asked if Zack could go and hang out with him for awhile. I agreed as long as Drake  took him and brought him back home. 

Once dinner was done, Frank and I sat down for the Presidential debate. We both agreed to behave while watching and once it was all done, we were none the wiser. Zack has discovered several different computer games that are light and fun, so every now and then I would go in his room to "help" him play.

Sleeping beauty?
Today is Thursday  and we closed the office early at noon. The timing was perfect as Zack was scheduled to receive two units of blood at 12:45 pm. The morning went smoothly, every day at work I am more and more myself. Like I said before, the party brought us all back to life and it's amazing how something so simple can be so cathartic. Of course also learning to take care of myself and rest when tired is making a huge difference. 

We arrive at the clinic, the blood is already there waiting for us (usually, we can wait up to two hours for it to arrive) so we are able to get started within 30 minutes. Zack requested that they insert an IV into his arm this time. He is tired of everything going through the port and wants to give it a break. The nurse finds the vein quite easily which surprises her as he is so anemic. She gets blood for labs and once the results are in we are told that everything is right on the border  but when he gets the blood his counts will get better. He is excited as he is told that if he feels well he can go to the tractor pull on Saturday.  

Rhonda stops by with just thirty minutes left on her lunch break. She looks great and it was so good to see her, even if for just a few minutes. We agree to meet for dinner if we are still in town when she gets off work.  Zack is given Benedryl and immediately falls into a deep sleep. He doesn't realize who is there or why. I take the time to do bookkeeping for Franks Company, arrange meetings with the Hospital for payments arrangements and possible financial assistance, order Juice Plus for Zack and me, and yes, even talk more with the "camper dude" to arrange delivery of our much missed pop up camper. 

Before I know it, Dr. Scotthorn walks in with another Doctor. He introduces him as the Radiation Specialist. Dr. M.  We sit down and discuss the next steps. I hadn't realized, but in about three weeks, Zack will be going in every day for radiation on the localized area where the tumor was removed. The Doctor explains the possible side effects are much less than with the chemo. There could be some mild swelling in the area and it could be a bit tender. No pain is expected as he compares it to receiving an x-ray.  We discuss how the tumor was removed and he mentions that there are no previous x-rays or mri's to review prior to surgery. He mentions that Dr. Bridges "did not follow procedure", No kidding!!! I  told him I am going to make sure that he NEVER does this to ANYONE ever again. I mention that I have photos of the tumor when I first discovered it. I open my laptop and show him the pictures. He says that this is so important to have and he is so glad the I have a record of it. It will help him in the marking of the area. He then proceeds to explain the future risks of radiation. Because there is not a lot of studies regarding Ewings Sarcoma and risks of radiation, he can only offer that studies without radiation show a high return on the cancer.  He mentions Hodgkins and Breast Cancer having a high risk of returning because of the locations where the cancer usually is located. The fact that his cancer was in the upper thigh, where there is a lot of muscle, tissue and fat, he feels that chances of returning in the form of a sarcoma are not high, but this is something that Zack will have to monitor for the next 10 - 20 years. The procedure for the radiation is going to be five days a week for three weeks. Zack will go every day, Monday - Friday, the treatment will last approximately 15 minutes. Along with this he will have to continue with lab work once or twice a week, but not chemotherapy. That will resume when the radiation is completed. The Doctor wasn't sure if Zack was going to be able to come alone, only because of the legalities of treating a minor, a detail I'm sure will work out. I could even arrange to take him on my 2 1/2 hour lunch break, so not too stressed about that. Next week, when Zack is in the hospital he will be picked up via ambulance and brought to the cancer center to begin the measuring and marking of the spot where the radiation is to be done. The Doctor even teased and said maybe they would let Zack drive the ambulance over, Zack said "the heck with driving, I want to look under the hood!". A true mechanic in the making!!

I would lie if I didn't say this was another blow. We keep hearing about possible long term effects of all of the treatments, but the bottom line is, without treatment his chances are too high of a risk, one that we are not willing to take. Let's face it, none of us know what our futures hold with regards to health, relationships, happiness, wealth etc.... We all do the best we can to take care of ourselves, to do what is right, but life (as we have been shown) happens, sometimes in spite of what we do and we have to deal with it as happens. to me words are powerful, so you won't see me repeat the "negative possibilities". I believe in being "aware", but not accepting of the "what if's".

The few hours were full of information, work and emotions. I'm glad when they say were are done and don't need to return until Tuesday for pre-hospital lab work.  Zack slept through everything so he is well rested and ready for dinner. As agreed we meet Rhonda and Peter for dinner of  (what else) Steak. Tomorrow Zack will do more school work and turn in what he has completed.  I have arranged for Mom and I to meet our dear friend Louis (his wife Celia has a full day so she can't join us) for lunch. We are anxious to hear about his month in Italy. As I told him in a previous email, I live vicariously through others and need to hear about his journey.  We agree to meet at the "Bistro" a quaint restaurant on the Biltmore House Property, where my sister works at Guests Services. ( ask for her if you ever want to visit the Biltmore House, it is well worth the trip).  Yes, I can't believe it either,  I am driving to Asheville again... but to see Louis and take Mom it is well worth it. Besides, they have some of the best thrift stores too! Hey, I can rest over the weekend!

All in all, it was a very productive day! Zack is already starting to feel more energetic and we are closer to the next step. Each day that goes by is another day he is done with treatment. A blessing indeed!

No comments:

Post a Comment