Zack and I head out early for the start of his second month of chemo at the Clinic. His appointment is at 8 am and we know we are in for the entire day. He is in a great mood in spite of what lies ahead. We are greeted as usual by the smiling faces. Zack has them all wrapped around his little finger. The nurses and doctors told me they look forward to seeing him, he is so cool, funny and such a great kid.
They start the usual protocol as Zack begins his school work. He set up his laptop and books on the bed and begins to write with his Senior project letter of intent, he then moves on to Sports and Entertainment, then English and ends with Psychology. I told him he can't do anything this weekend if not caught up with all of his school work, so he is determined to get it done. (Hey you have to find motivation somewhere). He is anxious to work on his car and bring it home and it's not beneath us to use everything we can.
I set up the desk against the wall with my laptop, medical bills and thank you notes. We never even turned on the TV today (a miracle in and of itself). Since we already are receiving past due notices , I wrote a letter to all the doctors, hospitals and anyone whom sent us a statement for services advising we are awaiting confirmation of medicaid for the first three months. I felt it better to keep everyone posted on the process and it's always better to put it in writing for our file. Communication is key! I called the new insurance company that begins September 1, 2012 and confirm that Mission is indeed in network and they cover the medicine Zack will need in the future. Everything is a go! The lady is very nice and says she wishes Zack all the best.
We are visited by a Chaplain named Buddy. A tall thin man, very quiet and calming. Zack said he thought him to be awkward. He asked how we were doing, what Zack was in for. We just sat and talked (you know what I do best). Next thing I know Zack is telling him where all I have lived, He asked what life was like in Belgium, then Spain. Religion is not mentioned until he asked Zack how he feels about his situation. It was cool how he handled it, he just looked at said "as the good book says in Matthews, it sucketh!". We all laughed and said "yea pretty much." He asked how Zacks friends are handling this and Zack said "they all pretty much have someone in their family that is dealing with some form of cancer, so they are used to it." I mention that we are not Christian, but spiritual prayers , we study several beliefs and we feel that though this is very hard on Zack, he has never questioned "why me" and knows that he is going through this for a reason, perhaps to be a teacher or student, or both. The Chaplain was very kind and said that we "seemed" to have a very good way of looking at the situation. He offered his services anytime we need to talk and thanked me for sharing my "stories" with him. Was he just being kind or or was he sincere? I think both, but it's not up to me to judge that. We both appreciated his visit.
Franks Dad (John) was brought into ER at 7 PM last night (I did not know this until the end of the day, I thought he was brought in this morning). He was having a hard time breathing (his health has declined over the past several years, so this is not a surprise) I expected him to be admitted to a room by now. I go to the front desk and ask what room, she says "he is in ER".. STILL? I go to ER and ask the security officer that is guarding the door,
he says "we don't have a John Fisher here.
He calls back to the room and tells me "he was discharged"
ME: really?? who picked him up? (mother in law had to return home)
HIM: "a woman on crutches"
ME: really? we don't know anyone on crutches!
HIM: "are you sure?"
ME: Yup, pretty sure!
HIM: "well maybe he took a taxi home"
ME: a one legged man that isn't even sure where he is? don't think so! FIND MY FATHER IN LAW NOW!!!
Him: "let me call admissions", "nope they don't have him either".
ME: "well should we call missing persons?" Isn't it up to YOU guys to make sure you don't LOOSE A PATIENT!!
HIM: "Let me get one of the nurses from ER here and they can show you his empty room."
ME: "real reassuring, how is an empty room going to help me?"
HIM: "well you can see he isn't there!"
Me ..............................
A male nurse comes out to meet me and brings me back to "the" room, clearly there is no one there. At this point pissed at the run around, I ask if he wants me to feel the bed to get a "psychic feeling for where he really is?" His response? "you're funny". (YOU WANT FUNNY??) All of a sudden the nurse says "oh wait, I think he is in here". We walk to the next room and there sitting in the dark in the edge of a gurney is Big John. There he was sitting up at the end of the gurney. He was slumped over (his favorite way to sleep) and lethargic. He sees me and smiles muttering something that I can't understand. He tries to undo his IV and when I gently tried to remove his hand he clenched his fists and took a punch at me, the good news is I'm pretty fast and jumped back just before possible impact. It hits me, it really looks like they actually forgot he was in there. I immediately call for a case worker and nothing. I go out to the nurses station and demand to see the head nurse. In walks a sweetheart of a nurse. I tell her John needs medicine for his headache and a patch as he is a pack a day smoker. I tell the nurse that I have to go back to Zack who is at the Cancer Center so she needs to get a companion to stay with him until he is brought up to his room. She apologizes and says they are our of rooms and are waiting for a bed, but in the meantime she will personally make sure he is moved into a larger bed in the other section of ER until a room is ready. I feel more confident now in leaving and let the nurse know that I am just across the street and WILL show up at any minute without warning to ensure he is being well taken care of. Oh yea... did I mention the ER called my mother in law at 6 am to ask when he had a pacemaker installed? She asked WHAT PACEMAKER??? Scaaaaary!
I reach the clinic, pick up a couple of sandwiches, drinks and chips for Zack and I (hoping he is up to eating, which he was) and tell him of my journey. He was pale, but in very good spirits. He hands me a piece of paper and is smiling. His count is back and he is doing really well. His body is still creating whatever he needs to protect him. He is excited! He is also determined not to get sick this week, we have a new mixture of medicine that seems to keep the nausea at bay. At 1 pm I had an interview with the National Sarcoma Foundation. The interview involves both Zack and I , so we are both on speaker phone sharing Zack's story from beginning to end. We are now included in their registry. The purpose of this is so that they can collect his medical information and keep it on file to compare to other Ewing Sarcoma patients. They also offer information on new treatments, trials and locations with the best care.
It is nearing the time to head out (around 5 pm). As I'm sitting there thinking about the Kytril ($223.00 for 60 ) I realize that Saturday his new insurance kicks in so I go to the Doctor and ask if she can give us enough for the week. Why spend the money for that many pills if we can get it for a co pay this weekend. they agree and get us enough for tonight, tomorrow when the pharmacy opens they will get us a couple more. I am finally using my head, or maybe it is that I'm finally able to concentrate. Yea, let's go with THAT!
We exit the clinic and make it home only stopping once when Zack was a bit nauseous. It is now 9:30 pm and he has taken three pills (2)Kytril (anti- nauseau) & (1)Septra ( fights infections) , drank his Mezna (sp) which coats and protects his bladder from the chemo (VERY NASTY TASTING STUFF (ABSOLUTELY DISGUSTING!!!!!! -written by Zack), and given himself his blood thinner shot. He is ready to go with Frank for a shorter day of treatment tomorrow. Frank will go and see his father while there and make sure he is still okay. We are lucky that they are in close proximity, so we can take care of both, though Zack remains our main priority.
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