5:00- The doctors are working on a game plan regarding my low blood pressures. The fellow and residents each come in and talk to us. If my pressure readings don't go up soon, I will be transferred to the PICU.
It is not uncommon for BMT patients to spend a few days in the Pediatric Intensive Care Unit (PICU); the PICU has the advantage of a nurse in your room at all times, and much closer watch over vitals, or other special needs. The oncology ward will even save your oncology room for you, so you don't have to transfer all your things. Thankfully, I haven't had to go there so far.
6:15- Anand and Catherine visit.
It is always a blessing to see Anand and Catherine, who lead Lighted Candles World Impact Ministries. Anand brought an encouraging message from the Bible- by Christ's stripes, I am healed. After the tumultuous day, it was a comfort to be reminded that God has promised to heal me, and is going to fully restore me. Also, it was a blessing to be reminded of all the people praying for me!
**6:25- New bags of lipids and TPN are hung- my steak and potatoes!
New bags are hung every evening. The problem is, the new bags will set the Pole alarm of every 3-4 minutes, which means a nurse has to come, clear the line, and hope the beeping will stop!
6:35 - Dr. Petrosiute confirms the plan to potentially move me to the PICU; the PICU has been notified I might be coming.
It's always good to have a game plan, so that if there is an emergency, everyone knows exactly what to do!
6:55- Dr. Matloub and Linda come back, and lay out the protocol regarding the bacteria- there is to be absolutely no water usage. No one can open any tap, flush the toilet, or shower. We get bottled water to drink, and Purell to clean our hands.
Wow!! You never know the worth of water until the well is dry.
7:30- I receive my daily dose of Lasix
I"m on a 24 hr. saline fluid drip, to help my organs flush out the chemo. However, my body retains too much of the fluid, which increases my weight, and causes fluid-retention in my hands and feet. As a result, I'm weighed twice a day, and my weight is closely monitored. If my weight is up, I receive Lasix, which helps flush out the excess fluid in my body. The problem is...I potty-trot every 10 minutes, for 3 hours, after receiving Lasix.
**8:00- Sheilka arrives, bearing idlis.
Sheilka is an Indian lady who befriended Mom and Dad when they first came to the USA; she and her husband are our adopted Indian grandparents. They live minutes from the hospital, and visits several times a week. Both times I've had cancer, Sheilka made different amazing Indian dishes that I requested, so that the spices masked the chemo taste in my mouth. This time she brought idlis, steamed rice and lentil cakes. They are plain, soft, and very gentle on the stomach. I ate one, the first solid food in over 3 days! She also brought a delicious red velvet cake, for me to share with the nurses!
|Sheilka and I|
Someone from my family tries to always be with me. Either Dad, Mother, or Rachel (or a combination) spends the night with me. They switch out every day, and there have been only one 24 hour period when one of my family was not with me. It's a huge blessing to have someone with me 24/7. They basically act like my slaves, running to fulfill my every whim and fancy, fetch food to satisfy my cravings, bring me encouraging notes, or help me when I'm puking or sick, among other things! Thanks guys!!
|One tired guy, in the middle of one tiring night|
9PM- I force down two Tylenol pills, since I'm running a fever.
My throat is raw, so it's extremely difficult to swallow.
|I alternate drinking the sickeningly sweet medicine with water|
|Taking the pills; I think my face says it all|
**9:30- Sheilka leaves; I receive my Actigall
The original 12+ pills I was on daily were slowly switched to IV, as I was unable to swallow. However, there is one pill I still have to eat every day- Actigall; it helps and supports the liver, and is very important. It's a struggle, but I'm proud to say that I eat one everyday!!
**10PM- Turn Food Network back on, while I wait for the Lasix to finish working.
Lasix works for a minimum of 3 hours, so even though I'm tired, I can't go to sleep! I turn on the TV, because at this late hour there isn't really any noise- I miss the noise of the family; the TV is a poor substitute.
**10:15- Prepare for bed. Text Mrs. Libassi and Christina.
Their son/brother Sam just had an auto BMT 2 weeks before me! It was so nice to be able to know what to expect from him. Check out his blog at
**11 PM -Go to sleep
|My sister took this picture of me and my can't-sleep-without-it -dish|
|I didn't know if I should include this picture...but hey, it's reality!|