Wednesday, December 5, 2012

Monday, Tuesday, Wednesday........

It is Monday and Zack's blisters are healing slowly but surely. We had decided to keep him from radiation treatment to give him one more day of healing. Our plan for this week is to be in the hospital, so since he only has four more radiation treatments, they can come and pick him up and bring him over for the rest of the week. No more driving every weekday to Asheville. What will he do with all that time? School work!!!! We figured that by the time he leaves the house and returns four hours are gone and it's the middle of the day. It's always better to get a good night sleep, eat breakfast and hit the ground running. By the afternoon he is already tired.

Zack went to school to drop off some work and ran into the assistant Principal. She "casually" mentions a test to him (one he has never heard of) and then says something like, never mind you won't be an early graduate anyway. Zack freaked. He came by the office and told me what she said, I of course, said "well, she was trying to get your attention!", You haven't turned in any of your English and you are way behind. IF you don't get it done and NOW, NO you won't be an early graduate. Though we rarely see the teachers, I think maybe five times since school has started (and that's total teacher visits for all) We have to hold Zack accountable as well. Tough? you bet! Again, a boss is not going to stand over him and say "now get your work done", at some point he will need to learn self motivation. I am disappointed in the "system" and how little effort is being put out, but they too are limited in the amount of time they can expend on one student. Aggressive words from an exhausted parent, who is having to also be teacher, cheerleader, bookkeeper, mother, housewife, well..... the fact that I'm writing the blog two days "late" should say it all, 

As I'm sitting reviewing my Facebook page, I see an invitation to a fund raiser. It is a young lady, 15 years old and in her second year of high school. She goes to the same school as Zack and had just had surgery for a brain tumor at Duke University Hospital. They thought at first it was benign but pathology reported it to be malignant. I won't go into the details, it's her journey and I can't keep track of others details as well. It is going to be a tough road ahead, this I already know. I saw that she was friends with Zack on FB and asked her to friend me. I wrote a personal note to her and her parents (not sure of her comprehension level after surgery) and told them to call if they ever need someone to talk to, as we are going through a similar situation. I see now that she accepted me as her friend too. This is all I can do for her, offer support and prayers. She seems to have a great support system. That is so important. Without friends, family and yes, even community support these journeys can be even longer. We, (again I can't say enough), are so blessed to have such support world wide!

As I sit there reading about yet another young cancer patient, I start to anger. I am fed up with this word, fed up with what it does to the kids and their families. I meet so many people, in the waiting rooms, hospitals, clinic and now FB. I hear their many stories and many successes as well. My emotions are up and down so many times when this word is mentioned. Lately it is the anger that comes out. "Who cares what the hell it is called, it's cancer" was one such comment which offended a very dear friend. Let this be my apology from this point on... if I offend, it is NEVER intentional and please accept my heartfelt apology in advance. I am a woman that has always taken what life throws my way (not that it's been that bad of a life). Right now, today I'm pissed. 

Let's move on to Tuesday morning,. We are all packed and ready to go. Just like when I was expecting Zack, a bag is always packed with the Hospital "staples", these are items that are not used in between visits, two lamps, extension chords, light bulbs, snacks, blankets, etc.... It doesn't take us long at all anymore to get ready. We have the folding laptop table, ottoman with a blanket neatly folded inside, the prepared bag and then we add our clothes and toiletries. All of this fits neatly on a rolling baggage carrier for when we arrive at the Hospital. Snacks and drinks are always purchased at the store after we are settled in the first day. We even have the arrival down pat. We pull up to the entrance, unload, leaving Zack with everything. I then go and "try" (usually after three times around the lot) to find a parking spot, walk back up to the entrance and we arrive on the third floor, Pediatric Unit ,with a a loud "We're BACK!!! Of course, as always we are greeted with a smile and our room number.

We started out this morning, as always, with radiation. They tell us this is the last week and it is more centralized than in previous visits. This is considered the "booster" treatments consisting of four. The burns that are still healing will not be affected anymore and will now be able to heal completely.We then arrive at the Pediatric Oncology floor and after labs are drawn are told the counts are well enough to "go in".  Dr. Bottom comes in and is concerned about the blisters. She doesn't want Zack to go in to the  because the chemo will shoot down his immune system and if he continues with both this week, his wounds may not heal. Zack (who usually doesn't have an opinion about when to go in ) looks at the doctor and firmly says, "I'm not going in next week!" I have the house party and two other parties I'm invited to if my counts are good. Dr. B decides to call the doctor who is handling his radiation and he assures her that there will not be anymore burning, so we are approved to go in.

We enter the Hospital, get settled in and it is now 3 pm and I head to the local store for drinks and snacks.  Just before I left for the store I noticed a contest on FB through a local store. The person that leaves the last comment at the end of the contest (no time given) wins this large antique nativity. So, I decide what the heck. Let me just say that, there were five of us, leaving comments off and on for four hours. It was so funny. We were the same five, with one additional person here and there. One lady in particular, Karen was saying what a rough week she was having and she really needed it, her underlying tone was playful, so I put in (remember people I have a weird sense of humor) that mine was worse because my kid is in the hospital. (this was also another chance to share our story via the blog, so I put that information in there as well.). She read it and immediately said "I don't REALLY need it", and I replied with "me neither, I'm just using the sympathy vote".  I did get a very sweet message from Karen, as she too has a 17 year old and it touched her heart. The fun part was that the five of us started getting silly. I was in Walmart and hadn't put my name in for awhile, so someone said "where's Sabrina?" I , of course having this all on my cell phone answer "lost in Walmart", Karen responds "attention Walmart shoppers, please find Sabrina and show her the exit.` I respond "I see a light Karen, should I go into it?" her response "No, I don't think you should." Others had similar responses and it not only made the time go by, but allowed me the luxury of laughing, yes out loud in the middle of walmart. I didn't give a damn who was watching me! At some point we were putting down each others names to be the winners, the President of the store posted the rules stating "the person who wins MUST show ID"... yadayadayada....Unfortunately someone marked us ALL (5 of us ) as spam and we all got either warnings from FB or were blocked!  We had all teased of visitation and when we discovered it was "one of our own" that won, my comment to him was "we will all meet and expect a custody arrangement to be made." Through all of this, I have met a new friend. Karen and I are now FB friends and thanks to a silly contest, had a wonderful afternoon.

Once finished ( a couple of hours later), in the store, I met with Rhonda in Zack's room. I drop off the goodies for him and his dinner and Rhonda and I  head down to the cafeteria for dinner. As we head downstairs to the 2nd floor I see a family in the corner of the Pediatric ICU waiting area. All of a sudden I realize they are the in laws of my former boss, Lisa.  Though I didn't leave work on the best of terms ( I quit after having a breakdown and she didn't understand) I still can feel for their misfortune. I went up and gave the mother, sister and father a hug. They are there waiting for news of their great granddaughter (26) who was in a head on collision with her 6 month old in the car. I found around lunch today (Wednesday) that the baby suffered a broken leg and the mother needed surgery on her arm. Both mother and baby are expected to make full recoveries. My meal was horrible, dried up roast beef, so I ate the roll as Rhonda devoured her sushi (which she said was fantastic!) Once finished , we said our goodbyes and I headed back up to Zack. They were just getting him ready for chemo treatment at 8 pm.  I had fallen asleep before him and when I woke up at midnight, he was still up on the computer, with the lights on and TV blaring. I told him he needed to get to sleep and change (he was still in his long pants, belt and even his boots). He snapped to which I snapped right back and said "not your punching bag!!" He immediately after changing gave me a big hug and apologized. He then explained that every time he moves his legs hurt from the burns. My heart sank, am I helping him or hindering? I tried to explain that perhaps wearing his shorts instead of long pants would help his legs heal faster, less material rubbing his legs. He agreed and thanked me. Within minutes, he was sound asleep, as was I. 

It is Wednesday and we are now down two more radiations and one more chemo for this week. Zack has figured out that if he wears my ear buds that came with my phone he can't hear anything else in the room. It's kind of funny in fact. We have to tap him on the shoulder to get his attention. He wore them all night and slept very well. I was so tired, I never even heard when Stacy (his evening nurse) would come in. I had ordered three mattress' this time, (yes I AM familiar with the princess and the pea). The only place to put them in under the window, which is also right under the heat / air conditioning vent. Zack was hot all night, so the air was on most of the time. I had hid under the covers, but when I woke this morning my sinuses were worse than yesterday. My eyes felt like two bowling balls were laying on them. We were awakened by a knock on the door. It was the EMT coming to transport Zack for his morning radiation. Within minutes they were all three out the door and I was getting ready to go to work in a couple of hours.

Zack returned from his therapy saying "they broke the machine." We had to go and use another one. Of course the joke for the rest of the day was "YOU broke the machine?" Dr. Scothorn came in and checked out his burns (Zack didn't want Donna .. daytime nurse to check him, he is embarrassed). Doc S. said everything looked good. He too is not worried about more burning.

Jessica offered to work for me this morning, so I took her up on her offer. I get a text at lunch (around the time I was heading out to work the afternoon shift) and Jess is offering to continue to work the afternoon shift.  Feeling worse I call her and make sure she really can and that Doc Steve is okay with that. Doc Nancy is out of town visiting her mother and I already felt weird about missing the morning. Her response, Yes I can and Doc says it is just fine!! Something inside just gave in and I finally thanked her and said I will come by and close tonight and get everything ready for the morning. I call Rhonda to meet for a quick lunch (she only has an hour and I didn't want to eat at the hospital again), we meet and once she heads back to work, I see go back to the Hospital and chill until 5:30 when I decide it is time to head home.

Zack had fallen asleep in the chair with his hands holding up his face. Before I left I helped him to the couch (torture chamber), get him covered up and kiss him goodbye. His face is flush so as I'm heading out the door I ask Donna (daytime nurse) to please check his temperature. She gives me a big hug goodbye and tells me to take care of myself. It isn't moments later that I can't hold the tears in anymore. I am exhausted, sad and an emotional mess right now. I know not feeling well is not helping at all, so I decide to just get my butt home and in bed.

As I head home I call my Mom/ Brother and he calms me down a bit, as he is always does. I talk with Jessica and thank her for working and just as I'm pulling into the drive, Doc Steve is checking to make sure everything is okay. He isn't feeling 100% so he says "we will do the best we can tomorrow, get some rest.". Once in the house I throw in a couple of loads of Hospital laundry, Zack is going through clothes right now with changing of bandages and is already short for the week. I sort through the mail, hug my little Sidi who is glad I'm home, but confused about the "others" not being here.

I call Frank to see is Zack did indeed have a fever and he says "no, it's all okay, rest." So, here I am finishing up a blog that has taken me three days to complete. I am glad to be home, but can't wait to be back with my "baby" tomorrow night after work. We are reminded constantly to, "count how many are left and you will feel better", not really!!! We are very busy making it just day by day, it's hard to look ahead or behind, we are here today and we must make today as easy as possible on Zack, tomorrow is yet to come. Of course, that's how I feel today, tomorrow maybe I'll be less pissy!!! (smile)
Mamma sweepy!!!

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