Day +4

So I thought I would take you through a typical day in the life of Pam and I right now.  If you have ever seen the movie Groundhog Day with Bill Murray then you can already get a mental picture.  We wake each morning at the Residence Inn around 7:30 am.  I go down and get breakfast at the buffet and Pam slowly wakes herself up.  We head to the hospital (.5 miles) for our daily 8:30 check in.  We slide into the room that is designated for Pam (we use it daily on an outpatient basis right now, and she will eventually be admitted to it full time when the time comes) and they take a blood sample and vitals.  This dictates her daily regimen.  She gets hooked up to fluids because her blood pressure is usually low.  They add magnesium or potassium as needed, right now about every other day.  She also gets a chemo. called Methotrexate that supresses her immune system.  This all takes anywhere from 2-4 hours depending on how many fluids they give her.  We also have a check in with the doctor on call to examine her and just look for symptoms they are watching for.

At 9am every day Pam gets her morning dose of drugs:

Levaquin - antibactierial

Acyclovir - antiviral

Voriconazole - anitfungal

Nexium - acid reflux

Cyclosporine - immune supressant

She takes these all in pill form at 9am and 9pm daily.  We have a "Blue Binder" that we keep track of all pills taken and when they are to be taken.  My job is to check off that it was done.  Pam also needs to track all of her fluids in and out.  So we write down everything she drinks in fluid ounces, and measure all fluids out in ml.   We also write down everything she eats, her temperature when she wakes up and goes to bed, and any other things we notice.  So far her symptoms are fatigue, tingling and light headedness due to low blood pressure (90/54), and mild insomnia.

After the morning hospital visit, we head back to the hotel and get some lunch.  We then either go for a walk outdoors, or Pam takes a nap.  We watch TV, read, and plan for dinner for a couple of hours and then actually eat dinner (quite a process, as Pam's diet is restricted now for food safety).  We then try to find a movie on TV, or some football and then ease into bed.  At 9pm Pam takes her meds again and we retire for the day.

We wake up the next morning and do it again!  Every day that we get outpatient is great, the ability to change locations, get outside, and stretch out a bit is fantastic for Pam mentally/emotionally.  Hopefully we will get 3-5 more days of that.  We were actually able to drive up to Bethel yesterday and visit the boys for a couple of hours!  A great medicine for Pam and the boys.  She kept her Mask on and lots of hand washing!!