Ok....so I have been telling most of you that I have been trying to get a hold of Dr. Rodriguez and he has yet to return my call!
September 2, 2010 - Treatment Day. I had written and told some of you that my chemo (Remicade) was going to be changed from the 5mg/kg dosage to the 10mg/kg dosage. The time was going to be decreased from every 8 weeks to every 6 weeks. Well on treatment day Mrs. Rene let me know that she had finally got a hold of Amity (Dr. Rodriguez's chemo nurse) and she had stated that the order for the Remicade was no longer in effect. I don't know how it was worded...but the point is the Remicade wasn't changing and was still 5mg/kg and every 8 weeks.
I was mad. Why? Dr. Rodriguez had told me that he had already sent in the order. He also said that he was ordering it 1- because he was scared I was building antibodies (raising dosage would change amount that body was used to so if antibodies were building it would be a change and would throw that off from happening anytime soon. 2- I'm not getting better so we needed to raise to the chemo so hopefully I would begin to feel better...I'm not going to say remission, because we are nowhere close to that....we just want me to feel better.
Ok so first problem - chemo not changed.
Mrs. Rene then informs me that the Cura-Scripts (whatever its called) did not send my chemo. (With this stupid company evidently you have to answer when they call the few days before and say yes to sending the order. Well that is ridiculous because if a doctor gave an order and it is approved by insurance...you HAVE to do what the doctor says...you don't call the patient asking are you ready. That is crazy. Whatever doctor says...goes!)
Now let me explain this. Originally Blue Cross Blue Shield (BCBS) had sent an order to Vital Care (the IV company Mrs. Julie is with) to be my Remicade supplier. They pre-mixed my chemo, brought it to the house, provided the pump that enabled me to walk around, provided the huber needle for my mediport, provided us with the heparin and normal saline (already drawn up as well), and always brought me a sweet little goody bag. Well they supplied me for a whole three treatments. After the third treatment BCBS also sent an order to this stupid place called Cura-Scripts or something like that. Well this company sent the vials of powdered Remicade and that was ALL! Mrs. Rene would have to mix on site, would have to mix with the bag of saline, had to supply the huber needle for my port, had to supply my heparin and my saline flushes, we had to HANG MY BAG OF FLUIDS WITH THE REMICADE FROM A HANGER ON A NAIL! It was just ridiculous. This company was just a prescription supplier. I didn't need a prescription of Remicade I NEEDED A TREATMENT OF REMICADE!
So anyways...BCBS never stopped the order to both places. So Mrs. Julie's company had a Remicade from the time both orders got sent. Well that company just stopped the order even though they had the order because they knew the other company was sending and they would be out money.
Well when they didn't send my chemo on the 2nd...luckily Mrs. Rene was able to get a hold of Mrs. Julie's company who still had that Remicade from that previous time. Well they saved my life because they were able to get a hold of it. All of us were just going to tell BCBS in sweet terms "Get over it" (but in worse words).
Ok...so that was the second problem.
So today which is 1 week and 3 days after treatment. I feel like a train hit me but in a worse way. I am swollen everywhere and I have called the Emergency on call doctor at Rodriguez's office. My throat was closing as well as everything else swelling so I just took some benadryl. If it gets worse he told me to go to the ER. Well we are waiting on him to call back....
We don't know what is happening right now, but we are very scared. I as a nurse am thinking one of two things:
Either I am on so many medicines that my kidneys are failing (all the swelling, plus the fact that I'm having trouble urinating...I'm having urinary retention. I have to push down like I'm having a bowel movement to be able to push the urine out)
or Either it is that I built antibodies to the 5mg/kg and I am having a bad reaction. If this is the case I will not be able to take chemo anymore and I don't have an option left because with me the chemo and upping the dosage was my last option of treatment...if this is case then I will just be put on more pills that don't work and eventually it will just take surgeries to fix problems that get worse.
So you all see where I'm at right now. I am fine...just needing answers, because whatever is happening doesn't seem too wonderful right now. I'm swelling all over for a reason. It hurts to move and it hurts terribly to get up and walk. My feet feel like they are about to pop when I walk on them....
As a nurse I know that while symptoms are worse I need a way to prove so I felt smart because I took pictures. Now you will see pictures where I push my finger to my skin and then the next picture is where I removed my finger. This shows the pitting edema. (fluid and swelling of the skin and what the depth of this swelling is/pretty much how bad) (I don't feel like explaining it all...you just will know when you see) When you press normal skin it goes straight back to what it looked like before you pressed it...Well my skin is living an indention for a little while...
What I'm feeling right now : Well I just feel bad. I feel tired. My fingers are killing me, especially at the joints. My wrists, my face (canker sores in mouth), the bottom of my feet on the pads, my knees, my hips, my legs...do you get the point...EVERYWHERE! and that is with my pain medication...its crazy
No more talking...these pictures say it all! (Also..the pictures of the pills are JUST what I had to take THIS MORNING...not all the pills for the day!)
I'm ok... I love you all...don't think I'm upset...I just don't feel very well writing this and I love you all and just wanted to keep you all up to date with me...just don't feel good! I love y'all and pray that the doctor calls soon!