Day 4

If I have learned one thing from extended stays in hospitals it is this:  no news is good news.  Because unless you're being discharged (the best day ever) it means you're having more procedures done, and 'nothing' is better than a procedure.

Today oncology and endocrinology were here for about five minutes each.  The only complications I have from treatment so far are the eye problems and the high glucose associated with steroid use.  As for the hyperglycemia, I'm happy to report it stayed under control all night.  However, I seem to have the most difficulty controlling it during the afternoon and evening, so we'll see how tonight goes.  I think I need to adjust my carb ratios (how many units I give per gram of carbohydrate eaten) due to the steroid treatments.  I finished lunch at 1145 and I'm already up from 152 at 1200 to 250 at 1300.

Suk, my nurse, just came in and I discussed the idea with her.  She's on board.  She's always so sweet to me.

So I took 4.3U correction at 1310 and will check my glucose in an hour.

My eyesight remains poor, but I am still able to use a computer.  Reading words off the TV is tricky.  I receive eye drops (another steroid, of course) every four hours to help protect my eyes from the chemo, but an improvement has yet to be seen (pun definitely intended).  By 31 December I will have finished with chemotherapy and the majority of the hazardous waste will have flushed from my body. As I'm told by oncology, my eyesight should begin to return.  If not I'll be considered for further treatment.

I am encouraged by the treatment so far.  I still feel healthy.  My ability to get out of bed, take a shower, and walk around the hospital amazes me, as it was never like this before.  The challenge will be remaining this way once my counts are down.

I love visitors, even if it's someone to just sit and watch TV.  Or calls, my room phone is 612 273 0729.

And To All A Good Night!

So my nurse asked my endocrinologist about bolusing for meals.  His response:  we're not used to patients on insulin drips having much of an appetite, so bolusing for what is being eaten is a great idea.  I got this news after having a late lunch, so I again spent my afternoon and evening in the mid 300's before it came down.  I ate a late dinner again and bolused appropriately.  We'll see how this treats me tonight.

Overall I've been feeling well.  I get out of bed and move around my room without any problems, although tugging around my IV pole is annoying.  Today IRael and I walked four laps around the 7th floor, my goal is to make it to ten laps total throughout the day.  It feels good to get out of bed and do things for myself.  Other than the high blood glucose I am not having any nausea or other side effects yet, but they tell me with Citarabine that typically comes later.  I just want to be sure to get as much exercise as possible while I can to keep my strength up and lung clear.

My doctors are fairly certain there is fungus growing in my right lung.  I'm on antifungals to treat it and they tell me as long as I'm asymptomatic they don't plan to treat it any different.  I haven't had a fever, cough, or difficulty breathing, but my CBC is still up.  Hopefully once this goes I won't have any additional advancement of the infection.  It makes me realize how incredibly sick I was when I was first diagnosed.  I think of all the precautions I take now (constant hand washing, wearing a mask when leaving my room) to prevent infection, I can't believe I was so careless this summer.

Today I had breakfast with IRael, spent the afternoon playing Uno and watching movies with my family, then walked the rounds with IRael before he headed home for the night.  I am so fortunate to have such a devoted and loving boyfriend, a family willing to drive through a snowstorm to be together for the holiday, and the constant thoughts and warm-wishes from friends and strangers alike.  I cannot convey my gratitude to everyone who is pulling for me, and I hope your holiday was a good one.

I just checked my blood sugar: 150.  Bingo.

Day 3

Yesterday was stupid.  Wednesday night they gave me a "low-dose" steroid to prevent nausea.  I told them my diabetes reacts badly to steroid (a common side-effect).  They say to wait and see how I'll react since it's supposedly "low-dose".  My pump wasn't able to keep up with my insulin needs and my glucose levels climbed into the 500's.  I finally switched to an IV insulin drip around 1600.  On the drip, my basal topped out at 16 U/hr (my pump stops at 2.5)! It lowered my glucose to 80 around 2030.  IRael and I ordered a big chinese dinner and I got another dose of steroids.  My glucose topped out around 350 overnight(no thanks to a bag of sour patch kids I ate around midnight) but was in the 100's by 0930.

So today I finished brunch at 1145 (2 U/hr), I get a glucose check at 1200: 156.  I stay at 2 U/hr until my next check at 1300.  Right now it is 1247 and I'm already at 207.  The drip is set up solely as a basal system (a certain dose is given as units of insulin (U) per hour).  I want to use a bolus system, so when my glucose levels are in normal ranges (80-140) anything I eat would be covered by a proactive bolus instead of waiting and adjusting.  I called my nurse and switched my rate to 6 U/hr at 1253.  She agrees with me but is informing my doctors, so we'll see what happens.  The drip also uses Regular insulin (switches to active form 40 minutes after injection and is metabolized completely by 6 hours) but I wonder why I don't use Humalog insulin (activates within 5 minutes and is metabolized within 2 hours.  Hopefully the doctors can stop by and I'll ask them.

Yesterday my vision really deteriorated.  Blurred vision is a common side effect with Cytarabine, but I worry it will lead to another permanent deterioration.  I think the high blood glucose I had yesterday played a factor, too.  It has now become difficult to see in my entire field of vision.  The nurses administer eye drops to me every 4 hours to help prevent dryness and chemical damage from the chemo.  Hopefully things will improve once the Cytarabine stops.

That and I lost my poker.  I hate switching to a new one.

My family just arrived so you'll get another post later.

Merry Christmas.

Here We Go Again

I'm coming at you live from the University of Minnesota - Fairview Medical Center.  I was admitted this morning around ten.  Since then I've been sitting around my room, talking to my different doctors as they come into the room.  Everything is just as I remember it:  the view from the window, the smell of the room, and (unfortunately) the menu I'm allowed to order from.

I just started the first drug of my chemotherapy cocktail.  The regimen is called FLAG and consists of three drugs:  Fludarabine/ARA-C (Cytarabine) and G-CSF (Filgrastim).  Fludarabine is administered via IV over 30 minutes.  Cytarabine is infused over four hours, starting four hours after Fludarabine.  Filgrastim is given as an injection.  All are given for five days.  The major side effects are nausea/vomiting, skin problems, vision changes, headache, and kidney and liver complications.  The cocktail will cause my immune system to temporarily stop producing cells (called neutropenia), which will make me susceptible to opportunistic infection for about a month.

I suddenly have lots of time on my hands,so I welcome guests anytime.  Just please don't visit if you are ill or in close contact with someone who is.  I am in room 7D-503.