A Few Stressful Days, but the End is Near

I have been out of commission for a few days, I must admit. Thursday we went into the city for what we thought was a follow up visit with the stem cell doc. Well, it turned out that instead of a two o'clock appointment, we had to be there for an 1145 pulmonary function test. We tried for a week to find out the date of this well, actually the time, but had to do a hundred calls to finally get it together! So we arrive for that a little early and walk to the other building where the test will be given. Not terrible. Scott goes in to an exam room, at a strange doctor's office, takes the test, about 45 minutes later, after waiting of course, Wait, the test was at 1045, we leave, it is a little after noon. We hoof it back to the Cancer Center, not really far as I said, go to the reception desk, and they send us right to the lab, Scott is scheduled for bloodwork at 130, but they will put him through. The day seems to be going great, Right? We go to the waiting area for the doc's office, wait about 15 minutes, the tech takes us in and does his vitals, it is now about 1ish. Ok, this is going great, we say, and are happy that we won't be in rush hour traffic on the LONG ISLAND EXPRESSWAY, well, no such luck. We hear the doc running thru the hall, see him run past the exam room several million times, but he doesn't stop, doesn't greet and keeps going. Finally a Nurse Practionior comes through the door. HO, has the doc been in to see you? No. OH, Well, he will be in shortly, he is the only one here, the other two are on a conference, both at the same time, so he is extremely busy. We look at one another, OK? The nurse P goes through the file, half of the tests he took for pre harvest are missing, so the poor clerk has to find them, he calls her and says he has a few that he was faxed today! She begins to go over the protocall, a drug that is being run througha clinical trial, we are slated for Scott to participate, it may or may not be the drug it may or may not draw stem cells out quicker with the use of Nupogen, blah blah blah, and you need to be here every morning for a blood draw, before you receive the med and come back at 10 pm every night to receive it , blah balhblah...............WAIT A MINUTE< WE HAVE TO BE HERE EVERY NIGHT AT 10 PM????!!!! AND EVERY MORINIG????????WHAT? Oh, she calmly says, Anna should have explained this to you when you met with her. ANNA, WHO IS ANNA? WHEN DID WE MEET HER? You didn't meet anna? NO! This is impossible for us to take part in, we have three kids to worry about, they can't just fend for them selves when mommy and daddy go off to the city for a few hours every night.
She totally understood, and said it wasn't a requirement to harvest stemcells. The doc comes in somewhere around 330. He stands there and listens to what the NP tells him about us and the kids and his response was, "HOW ARE YOUR THREE CHILDREN MY PROBLEM?" and "WHY DO BOTH OF YOU HAVE TO COME HERE FOR A LITTLE SHOT IN THE ARM?" Meanwhile I could see my husband's already jangling nerves going over the edge, as my BP rose to heights unknown. My confidence level in this doctor just flew out the window. But anyhow, we were speaking to the doc, who called our doc, because we had made arraingements with a friend who is an RN to give the Nupogen, stem cell drug to Scott over the weekend, if we could get the meds. The doctor wouldn't release the drugs to us and called our doc whose office was closed on the weekend. This was the problem, EXPENSIVE MED! our insurance company wasn't going to pay for the med, sound familiar, and we needed it. What we were trying to do was avoid a trip into the city on Sat, SUn, and Mon. The Nupogen had to be given on those days prior to collecting the cells. It worked out that we had to have Scott go to the city anyhow. Needless to say he had to go thru an HIV test all over again, and the poor social worker caught my wrath about the way everyone communicated to us and each other. Non existent communication. We did get stuck in horrific traffic and didn't get home until 7pm.Thank God for my sister and her husband.
Next day, Friday, the day the Catheter is going to be placed. My Father in law drove, so at least that stress was knocked out of me. I was still worried about Scott though. Anyway, he signed consent with the Nurse who is going to do the stem cell harvesting, a real doll of a lady that makes you feel very comfortable with her and in her procedure. Her, I feel confident in. The procedure went off without a hitch, the doc who did it was also a doll, as was the staff. We were out of there by 4, the procedure started a little after 2 and with recovery time, 4pm was reasonable. During all of this I was on the phone with the local doc's office who said that he would release the meds. His nurses and billing dept tried to figure out a way to bill them and release them, but to no avail, so we were back to the pharmacy. The nurses at the doc's office were trying really hard, they got the approval override for the insurance to pay for it, sent off a letter of Medical Necessity, etc. It was going to be approved. I called the pharmacy. NOPE< WE WON'T RELEASE THE MEDS< I WON'T OPEN A CARTON OF TEN< TO GIVE YOU SIX AND GET STUCK WITH THE REST. THEN HAVE TO OPEN A CARTON OF TEN TO GIVE YOU THREE< NOPE, NOT HAPPENING. So that was what made the decision to go into the city every day.He gets to take a ride with his dDAD yesterday and today, Tomorrow we may take the kids together, who knows. WHatever arraingements he needs to make, that is fine. The cost of the med if it had been released, 1500 dollars a vial! So we would have had an 800 dollar a day for three days copay. He needed 3 vials a day! More cost effective with the tolls, travel and gas!
So Yesterday, Scott went into the city with his Dad, today too. Yesterday was Patrick's 13th birthday, we still had to get ready for that. We had coffee and cake in the evening, a dark chocolate cake with chocolate icing! Yummy! I actually baked! But I had to do that, and get the house presentable, because, as you know, I was out of the house and not back in until 7pm both of the previous nights, and Patrick wanted to make his special salad on his birthday. We set out shortly after Scott and got everything we needed for the evening and for the salad. Then when Scott got home, we took him(Patrick) to get his present. We added a cell phone to my plan, so that we could get in touch with him at anytime, it looks as though we will be spending a ton of time in the city, and I feel safer knowing that he will be a phone call away.
After allof this, we have a transplant date, which wasn't yet set until we stomped our feet and got one: MARCH 14th.
So, the end is comming near, and I too am very happy, nervous, and frightened. I know this will be the best thing to put this disease to sleep, and so that I will have my husband back. I just hate that he is going through this, I still haven't seen the fairness in it all. I guess we, as a family will come out on the other side of this stromger, with more wisdom, and closer. The kids have really stepped up to the preverbial plate, the boys, I mean, Cassidy just thinks that all of this is normal! Poor thing! Anyway, the boys have matured, and gone through this relatively unscathed, a few fears and bumps in the road, though, but still themselves.I feel all of my 40 years, never before have I really felt my age, but now I do. I used to say, I still feel the same as I did when I was 17 and graduating from high school, not anymore. The gray hair, I earned it, and sometimes for months at a time, I let it show. My friend the hairdresser, threatend, at my suprise party, to have allof my friends chip in andbuy a year's supply of hair dye, but it doesn't bother me. I did earn the head full of gray, and it is mine, I own it! That is all for now, I think you all will understand if I really don't have a heck of a lot of time to write this week. Stay with me, we will be harvesting TUE-FRI. I will catch up with all of you when I can.