When I first started this treatment, my doctor told me that I might lose a day. When he said I might lose a day, I really thought he had lost his mind. I thought, "How bad can it be?" Then I started the treatments. Not only did I lose the day of the treatment by virtue of the treatment itself, I also often lost the day before. I get partial amnesia of things said and done the day before and most of the time I get partial amnesia the day after as well. It is a little bit scary. Sometimes there are important details that I have lost and sometimes it is just that I called someone and lost the entire conversation. So because of this "amnesia," I decided that this time I would try to type up some things to jog my memory of everything that happens so that I wouldn't lose this as it is part of what will help me become well. I want to remember the good, the bad, and the oozy. So the following blog will be what happened on 9/9/08
At 6:45, I was awakened by my husband who kindly reminded me that I had to get up. For some reason I thought I had to wake up at 7:00 to leave at 7:30, but the truth of the matter was that I had to be up by 6:30 to leave by 7:00. Ooops. So I stumbled out of bed to brush my hair, teeth, and toilet (and no I didn't BRUSH the toilet). Then I scrambled to find clothes to put on. Then, I gathered all the necessities for the day. I always have to take Benedryl & Molybdenum with me, something to eat, my new PICC line dressing and something for entertainment. When we first began IV treatments, I purchased a portable DVD player to use for treatment time so I wouldn't be bored out of my mind. By 7:05, we were both out the door and on our way. My husband drops me off the doctor's office around 7:45. I sign in for the treatment which basically says that I accept any treatment they will give me and that I won't sue the pants off the doctor's office should something go wrong. I set up all of my things in the IV room and wait patiently for my appointment to begin.
My PICC line is assessed by the family nurse practioner and my new dressing is applied. Let's say this is never a pleasant experience, but in the last week I have had it changed 9 times so this time was particularly painful. For reference, the dressing is usually changed once a week. I have a problem with my PICC (specifically with the stuff they use to clean the area) so I've had a lot of blisters and oozing to handle. While this is being done, the RN is mixing up the first bag for my treatment.
By 8:40, I am sitting in the IV room with other patients. I take my 50 mg of Benedryl and my drip is started. I remember saying "I didn't get the full treatment." To which my nurse replied, "Oh we forgot to get your water." No they forgot to take my vitals. :) So my vitals were then taken (and I'll spare you the I only weigh 95 pounds and my great blood pressure and all the other details that are in my IV chart) and I began to watch Mr. & Mrs. Smith on my DVD player. The first bag really does nothing, but make me a little sleepy, but in retrospect it is probably the Benedryl kicking in. I call my husband to let him know the approximate time of ending just in case I fall asleep prior to the 3rd "bag" starting.
I begin to eat my lunch (early I know, but I knew I'd be asleep for real lunch) which consisted of a ham & cheese bagel and applesauce. I also took my Molybdenum 30 minutes after starting the 1st bag. Around 10, the first bag finishes and I clamp off my IV. Shortly afterwards, the RN arrives with 1 bag and 1 bottle of meds. If I was using a regular IV, this 2nd bag would cause the most pain. Prior to the PICC, this m ed would take 40 minutes to complete and I would spend the entire 40 minutes holding my arm, closing my eyes, and popping pain meds. However, because I have a PICC line, I do not feel this drug rushing through veins so the time is 20 minutes, with no holding arms, no pain meds and I finish watching the episodes Grey's that I had started during the 1st bag. I know that shortly I will be sound asleep.
Twenty minutes after this bag finished, the RN switches it to the bottle of meds. The 3rd bottle looks like a bottle of Mountain Dew. The 3rd bottle is so difficult that if they put it in a bag, it would eat through the plastic. Imagine what it is doing to my body and the bacteria in my body. I quickly call my husband b/c shortly, I will not be with it at all. At the beginning of this treatment, I freeze. I shiver and feel like I am going to throw up. I never do though. I remember my nurse always asks me if I want a blanket, but I never do because I know shortly I will be burning up, hurting and not wanting anything to touch me at all.
From this point on is quite fuzzy. I remember my nurse getting the supplies I would need for a home IV infusion, I remember my husband arriving to the doctor's office and I remember getting in bed. My husband said we arrived home around 11:30 and that I stumbled my way to bed. I slept the whole way home moaning in my sleep of what my husband can assume is that I was in so much pain that moaning was my way of coping with it. Fortunately, I do not remember the pain. So I slept from 10:30 to 6:45 only interrupted once to to go to the bathroom and get some water. I would not have woken at 6:45 except my husband returned home from work and wanted to ensure I was alright. So I stumbled out of bed at 7:00 to go to the bathroom, drink lots of fluids and eat some dinner. I got online for about an hour to check in on some friends, chat with an old friend, and then I decided that I needed to get back to bed.
I'm not sure what time I fell back to sleep but it was in the 8:00 time frame and I woke up at 3:45am. Sooooooo
What this boils down to .. is that on 9-9-8, I slept from 10:30am to 3:45am on 9-10 with maybe a total of 90 minutes being awake. THAT IS CRAZY. I did lose my whole day. For the record, I barely remember any of Monday or Tuesday. I am glad I wrote this at 3:45 because I would not remember it.
Today, I felt wobbly all day. Like the world was going at 65 mph and I was stuck going 5mph. I am finally feeling a little bit "normal."
Sooo Sooo weird. Hope you "enjoyed" peeking into the day in the life of my treatment.
Stay tuned tomorrow for: How did I get diagnosed?