Tuesday, February 12, 2013
"Mom you are seriously twisted"
This day couldn't come to soon for me. Zack of course, is not so thrilled, as it is chemo week. Having waited since Friday (when we discovered the bump on Zack's leg) we have been anxious about having the Doctor look at the area.
We arrive at the center around 9 am, which allowed us to sleep in a bit. Well, I did, Zack spent the night at Drakes so he left there when the kids left for school. Melanie does the usual height, weight, blood pressure, temperature checks. She then takes us to have his port accessed. She knows by now not to comment on his skin color and whether or not she thinks he will move forward with chemo. It's hard to tell really and we usually get it wrong. His blood is drawn, usually three samples and she then sends us to one of the rooms with a couch and chair. Apologizing, she says that two rooms with beds are reserved for smaller children. Zack is thrilled, as he doesn't like being in the bed. He picks room #8 and announces it as "HIS ROOM".
He settles in and pulls out his laptop. He reaches in his pocket for his cell phone and then forgets that it was damaged by water (a glass spilling over) at Drake's house last night. We filed with the insurance company, but it is taking a couple of days for them to review, since this happened to him before. (Just another "person" for me to fight with, should they turn us down.) I set up a mini office on the couch, setting up my laptop and pulling out the folders of those organizations I need to contact today.
Zack has told me on the way to the Cancer Center "whomever wants to check out my sore, better ALL get their asses in the room at the same time and look at it, 'cause I'm not pulling my pants down all day!!" All of a sudden I come up with a funny idea. (I try everything to find humor to lighten the mood). I tell him " on the day of his final treatment , we need to be in one of the exam rooms, facing the hospital nursing garage and moon everyone that walks by!" He thinks it is hilarious and says "Mom, your so twisted, I never even thought of that, hell DONALD never even thought of that!!!" We both get a good laugh and then I explain how I totally understand where he is coming from with regards to looking at his bump and assure him that only the Doctor will look at it. He tells me that HE will be the one to tell the doctor, but right or wrong, I needed to talk to him first to share my concerns. Zack still doesn't share everything and I wanted the doc to know how much pain he was in and how hard it was for him to walk, so much so, that he laid on the couch most of the weekend. I go to the front desk where all the Doctors and nurses are working and ask Dr. S to come out to the hall. Luckily he too has a 16 year old son and understands the shyness. He assures me that he will be the only one to look at the leg and will do so discretely. As I re enter Zack's room, I tell him what I told the Doctor. He isn't thrilled, but later thanked me for taking care of things. Every so often I remind him that it IS his body, but it is also our responsibility to ensure that everything is known about his condition, no matter how little he may think a problem may be.
Shortly after talking with Dr. S. he enters the room. He says that the counts are right on the boarder and he can have his chemo treatment today. It isn't until later into treatment that we both realized he didn't get the red stuff (which can make him very sick!). Melanie explained that he is nearing the end of the life time maximum on that particular drug, so they are skipping a week here and there and giving him the milder chemo. The Doc explained that he understood no one else was to look at the sore on his leg and appreciated Zack letting him take a look at it. I didn't really like his expression when he finished looking. He stood up and said "we are going to put you on oral antibiotics and an antibiotic ointment, if it doesn't clear up in a week, we will order an MRI." He looked at me with concern, which caused me to freak out internally. Once the examination was completed, I went outside and asked him if there was something for me to be concerned about. He said he just didn't like the fact that it was infected and with his counts low, he wanted to make sure it would heal. He said it is unusual to develop another tumor, especially while on treatment, but needed to rule out everything. He would have a better idea once the infection was gone. The fact that it was also so painful and his tumor was not, is a good sign. Looking for more comfort, I asked a couple of the nurses and they said he would have ordered MRI immediately if he was concerned. So, considering they have been taking excellent care of him and have never hidden anything from us, I am going to relax and know that he will be all right.
As Zack was receiving treatment, I ran to grab us lunch and pick up a loaner cell phone for him. The rest of the day was spent on the phone making payment arrangements with the Anesthesiologist, Cancer Center and Mission Hospital. All had agreed to a "charity care discount" based on our income, with the exception of Mission Hospital. Susan ( a rather condescending woman) finally (after a month of waiting) answered my call and said "I sent you a letter a couple of weeks ago, to 130 ....) I explained that was not the right number we are 176... to which she replied "oh, well then, I'll send you out another one. Is there anything else I can do for you?" I reply with "yes, you can tell me if I won the appeal?" " oh no, you didn't! the others that honored this went by the old income guidelines , we are going by the new ones." "So, everyone else got it wrong and you did it right?" "Yes" was her response. I told her that I would be submitting a new application, as our CPA was finishing up last years personal taxes and we will then see if we qualify. Never a dull moment. At least, for now I know what their guidelines are and will have an idea before submitting a request whether or not we qualify and I can now set up payment arrangements with them and have the phone stop ringing all day with debt collectors.
I had some time to visit with Karen (our social worker), who gave me some other names of people to contact at Mission, as I also received a $259.00 bill for a couple of weeks ago when I went in and then had to walk out of the ER, without receiving any kind of treatment! I would hate to think of how many people are paying bills that they are not meant to pay, simply because they are sent to them.
We wrapped up around 5:45 pm. Since we are having a Valentines party for our patients on Thursday, I stopped by Sams Club (you are welcome for the free advertising) and picked up some cookies, fruit and drinks. Zack stayed in the car, as he wasn't feeling great and I didn't want him in a large crowd. Within twenty minutes I was back in the car and we were on our way home. Since he just has a Neulasta shot and Lovenox levels tested tomorrow, Donald can go with him. He calls him on the way home and they set up a time. Of course, later in the evening he comes over to spend the night and try and cheer Zack up.
Once we arrive in Brevard I remember I have a prescription of my own to pick up (I was lucky enough to have Zacks antibiotics filled at the Cancer Center pharmacy earlier in the day). Zack wants Taco Bell for dinner, so we drive through as it is right next to the pharmacy and as he stays in the car I run in to pick up my "patches". Zack of course teases when I apologize for having to make another stop, he says "is it your hormone patches?" I say "yes", he responds with "oh my God, please, please get them... we can't go through THAT again!" referring to a couple of weeks ago when I didn't have them and turned into a monster!! Out of the mouths of babes!!! We both get a good laugh out of that comment.
We are finally home after stopping at Drakes to pick up his phone charger, which he left last night. It is then that his mood changes quickly. He must now drink his Mesna. I'm not sure how to describe this "STUFF". The scent is so bad you can smell it from another room in the house with the door closed!! It gets harder and harder for him to drink this each month. Today was the first day that I see him have such a violent reaction before drinking it. He couldn't even go near the kitchen counter due to the smell, then he gagged each time he got near the drink, he sat down and couldn't stop shaking and crying. He kept saying "Mom, Dad, I can't take it! I can't drink it". We know by now not to say a word. He knows he must drink it, why point out the obvious. As he sits on the chair in the dining room crying, I simply rub his back and tell him how proud we are of him. He gets up and down several times, walking into his room, then the bathroom, back into the dining room. This lasts about an hour. There is a certain time frame in which he is supposed to drink it, but we can't hold him down and force it down his throat, so we just wait patiently for him to come to terms with it all. All of a sudden, he stands up, walks to the counter holding his nose and gulps it down. He grabs his drink and then a mint. The tricky part now continues as he must keep it down. If he throws up in the next two hours he must repeat the steps and drink another one.
(The chemotherapy drugs ifosfamide and cyclophosphamide are normally removed from the bloodstream by the kidneys and broken down into other compounds. These compounds can damage the lining of the bladder and cause blood in the urine, a condition known as . Mesna works by binding to these compounds, making them less toxic. They are then excreted from the body in the urine.)
It is now 10 pm and he has made it past the two hour mark. Donald is here and the two are relaxing watching a movie. Zack is fighting me about taking his antibiotics tonight, but I still forge ahead and push him into taking it. I'm sure there are times he hates what I'm doing, but I know, one day he will understand. As I sit in bed writing the blog, Zack comes in and just sits for a couple of minutes. We don't say a word, he reaches out his hand and squeezes mine, gets up and heads into his room. This precious moment turns again to laughter by Frank's snoring while sound asleep on the couch. Zack turns to me and we both break out laughing! Frank and I had already agreed earlier tonight, he was exhausted physically from work and Zack and I emotionally, but equal just the same.