Infection – Fever – Hospitalized – Day 1 – Chemo Therapy Round 2 – Cycle 1 + 17:
02/07/2013:
4:30: I get up out of bed to use the bathroom, I have been tossing and turning all night long and have been unable to sleep. It is storming outside when I exit my room and my dad is already up watching the weather because it is storming really bad outside. I use the bathroom and then return and watch some TV with him. I need to get some sleep, I have an appointment in 5.5 hours with Dr. Safa at Tulane University Hospital and Clinic at Tulane’s Cancer Center.
5:00: I started drifting off to sleep and slept a little better than earlier but still in and out of it.
8:30: I get up out of bed. I eat some Honey Nut Cheerios.
9:00: My mom and dad and wife get into my parents car and my dad drives us down the Tulane Cancer Center in Downtown New Orleans.
9:30: We get to Tulane and walk around a little bit figure out where exactly I have to go.
9:35: I sign in at the front desk. I take my seat. I am starting not to feel good, but try to ignore it.
9:45: I walk back up to the front desk and told them I signed in, and asked the if they have a new patient packet for me to fill out. They give me a clipboard with 4 pages of info to fill out.
9:50: I return to the seat by my wife and start filling out all of the info.
10:00: They call me back to the desk. She asks how far I got, I said the first page basically because they asked a ton of question and spaces to fill out. She said that’s fine, she asks to see my license and insurance card and said that I wouldn’t have to fill out all of the paperwork, she could just scan it into the system. She points me to the last 2 pages and has me check mark some boxes about past history and also sign the consent form. She then ask if I am paying my co-pay at the moment as well. I say yes, and give her my credit card for my co-pay.
10:15: She processes everything gives me my cards back, the receipt, and sends me back to my seat in the waiting room.
10:30: We are called to the back. The nurse walks us down the hall to the Hematology/Oncology Department. She shows my family to the patient room, and sits me down in another chair to take my temp, weight and blood pressure. She asks me if I just drank some super hot coffee or something, I said “No”, and asked “Why, do I have a temperature?”
She says, yes 100.8.
With me with my chemo and everything I should go to the Emergency Room if my temperature is ever over 100.2
10:50: The nurse shows me to patient room where my family is waiting.
11:00: Still sitting in the room, not feeling at all.
11:30: Still in the room waiting, I lay back on the patient table.
11:40: I sit back up as I am really starting to feel the nausea hit me.
11:50: I go over to the garbage can, but nothing comes up. I put some cold water in my hand and wipe my face and head.I ask someone to ask them where the bathroom is not wanting to head out the room to I know exactly where I am going as I have access to a sink and garbage can at the moment. I am shown to the bathroom. I still do not throw up, but while I am there I do use the bathroom and rest. I then wash up and wash my face with cold water and then head back to the patient waiting room.
12:00: I am back in the patient waiting room. They tell me they will come explain more of the transplant process, but first they want to do a blood culture from my port to see if it is possible my port is infected.
12:15: The nurse comes in and I ask if they have any numbing cream, she says she doesn’t, but she does have some Pain Ease spray that numbs the area. I ask her if the needle she has is compatible with my smart port. She says she is not sure, and will have to go check. While she is out checking. I pick up the needle and start examining it, through its plastic casing of course, it looks like its the wrong type of needle just from examination. I then see that in small print it is a non-coring needle on the back of the packaging.
12:30: The nurse comes back in and says that that is the right needle. She gets to work. She prepares her culture bottles and the needle. She then positions herself on my right hand side and has me lay back on the the table again and puts my feet up. She then sprays my port and numbs it up and then puts the needle in. I don’t feel a thing. She then tries to pull back some blood but can’t get it. I move around she still can’t get it. I walk around and she still can’t get it. She then pushes some saline to get some flow going, and then she is able to pull back the 4 syringes of blood she needs. She fills up the two cultures bottles and she fills up 4 vials of blood to send off for testing.
12:40: She comes back in to get some external cultures from my arm but she is not confident of sticking me with my veins and my hard sticks, so she says another nurse will do it.
12:50: Dr. Safa comes in with a few other members of her staff and starts going over what will go on during the whole transplant process. They will have to schedule it to be in sync with one of my salvage chemos so that they can give me the Neupogen following the chemo. They will then watch my blood count to watch it dip, and and as soon as they see the numbers starting to rise again they will start doing a blood dialysis on me where they pull the stem cells out of me and freeze them. This will go on for a week, 5 days straight, for 5-8 hours per day till they have enough to give back to me during the transplant. Once they have collected enough they will let me rest for 1 week. They will then do 9 days of chemo with different drugs counting from -9 to 0. Then either on day 0 or day 1 they will watch me for 15-21 days until they are happy with my blood counts returning to good numbers. Since I live locally, they will then let me return home. They will continue to monitor me and I will come in for a number of check ups, but while I am home I will not be able to be around any children 14 or younger and I will also not be able to be around any pets including Buster, as they do not want the possibility of transferring viruses from animals to me, or scratching me and causing and infection or any chances of anything really. Anyone seeing me will have to make sure they are clean before entering the room I will be staying in, along with washing their hands. If they have any sickness whatsoever, they will have to wear a mask, or not see me at all.
1:20: We talk with the Stem Cell Transplant Coordinator and she goes over everything with us including a packet and how to contact her and what we must do next to prepare. Dr. Safa comes and tells me that they talked to my oncologist Dr. Veith and that I must now go over to EJGH to be admitted for my high temperature.
1:30: We are heading out of Tulane and over to EJGH.
1:40: I am dropped off at EJGH. I go to the admit desk. They don’t have me in the system yet. I call Dr. Veith’s office and they are getting everything OK’d with the insurance company and then they will finish up the admit orders.
2:05: One of the admit staff calls me and starts checking me in. Everything is already in the system, she just needs my co-pay, so I give my Credit Card for this $250 Hotel I mean Hospital Stay.
2:15: I take my admit papers and start heading up to the 5th floor. I see some of the nurses I saw two weeks ago for my last chemo infusion.
2:20: I am in my room. I was originally told I was going onto room 518, but was put in room 516. They put a sign on my door saying that none of my visitors can be sick, everyone must wash their hands when they enter my room, that and other rules.
2:35: My dad finds me finally in 516, I originally told him 518, and then had to text him 516.
2:50: Shannon my nurse comes in and tells me everything we are about to do. I am at 100.3 with the fever. She wants to access my port. I tell her let me call my mom to bring over my lidocane cream for my port because accessing the port hurts like hell because of the way the needle pinches the skin against the port before piercing through, a needle for blood isn’t as painful, I tell her that they can come draw blood from my arm. She says she will call them to draw blood from my arm and to call her when I am ready.
3:10: My wife and my mom both arrive. My mom gives me the lidocane cream and I give it to my wife. She puts on one of the gloves out of the bag and then applies the cream to my port.
3:15: Done Applying Cream, now I just need to wait an hour before I let them access my port.
3:30: Shanon comes back and checks on me and I tell her that I should be good to go at 4:15 for her access my port. She makes a note of it.
3:40: I am just hot and tired and just lay in bed. I am so out of it, I don’t even feel like getting on my laptops. That should show you how far out of it I am.
4:15: Shannon comes back with needle to access my port. She wipes off the area, sanitizes the area, puts on gloves, and the readies the needle with saline throughout the line and needle. She then sticks the needle in. I feel a very slight pain but something like a 1 on the scale of 0 – 10 so not bad at all. She puts the plastic patch on to hold the needle in the port. Shen then proceeds to flush the port and draw back blood. She then grabs 4 bottles for cultures to be done here. She prepares to pull blood, but it take a little while and then she figures she has to pull down on the needle to get the port to move just a little to get the blood to come back. She pulls 1 syringe to throw away, and then she pulls 4 syringes, for each bottle. She then puts one syringe into each bottle, flushes my line with 2 syringes of saline, clamps off my line, and then leaves to submit those cultures.
5:00: Shannon come back and hangs some antibiotics and fluids. Until they know exactly what is in my system they are going to give me a few different rounds of different antibiotics.
9:00: My temperature is 103.1. The nurse calls the doctor and the doctor says to give me a 500mg Tylenol.
11:00: My temperatures are in the 101 ranges, so the Tylenol helped.
11:30: I get an Ambien to help me sleep.
11:59: Another day gone, blah…
