Continuing the journey at home

Since we've been home Randy has continued to struggle with loss of appetite caused by an odd, uneasy nausea. Eventually Dr Dean told us that it was probably because his digestive system was sloughing off what was killed by the chemo. That has been getting a little better, thank God.

We have been self-quarantining since Randy started chemo treatments in February. For someone as social as Randy that is a very long time to be away from the people he loves. Fortunately the journey is made easier with support of others. The texts and calls from friends mean so much. People have sent us cards and gifts, and now are bringing us meals. The local Weight Watcher group that Randy has attended even sent this lovely hand-written quilt!

The cycle continues, and we are on a high note again

For several weeks I have had nothing unusual to write about because the days have been the same. Randy has been in a state of extreme exhaustion, trying to come out of it enough each day to eat something and do a little activity. And every Friday we have driven back to Gainesville to get his blood tested again. At the high point in the hospital his ANC was over 6,000. Unfortunately it has been going down steadily and as of last Friday it had sunk to about 1,100, and we were getting concerned. 

But today his ANC was (drum roll) 4,590!  And his WBC and Platelets are normal, too! So much good news in one day!

Home at last

 Zzzzzz...

Waiting again

We cannot go home until Randy goes 2 days without a fever. They continue to run tests but honestly, I think they are almost out of tests. 

There has not been a definitive answer of what's causing the fevers, appetite loss, and extreme fatigue so the treatment has been pills and IVs of antibiotics and antifungals, plus meds to prevent asthma attacks (which he does not have). The staff are wonderful and days are boring again, which are still the best kind of hospital days to have. But we really want to go home.

Our original hotel reservation was until July 24th. Obviously we're extended it a few times and now we need to again. The hotel staff have been very sweet and helpful but this time we really cannot stay in the same room any longer. So Sunday afternoon I packed up our stuff and Monday I moved it to another room.

Almost miss the CVL

Friday the IV in Randy's right wrist was clogged, so they took it out and put a new one in on his left wrist. Unfortunately the next morning his hand was very swollen. So they took that line out and put one into his right forearm. But as the day wore on it really started to hurt. After dinner the nurse tried to find a suitable vein in his left arm but couldn't. A phlebotomist came in and checked his arms a long time before saying nope, she would only stick him if she was confident and she wasn't. So the order was put in for an ultrasound phlebotomist. And at 3:30 in the morning a guy came bustling in, wheeling a portable ultrasound machine and cheerily saying "Good morning! I'm going to turn on the light now!" 

He was quite good and placed a needle in a deep vein in Randy's left forearm. Just in time Randy mentioned that he was allergic to the standard dressing and the nurse prepared the other kind. Then she removed the old IV, which really hurt. But Randy had a brand new IV, just in time for his nightly antibiotic drip.

30 minutes later another ultrasound phlebotomist came in and turned on the lights, ready to change his IV needle! No thanks, once was enough.

At one point I asked the nurse about the results of Randy's Saturday evening blood test. His ANC is up to 2,800! The doctor has warned us it will probably fluctuate up and down, but at least now there is some "up"!

ANC comes back!

The results of the Thursday night blood test: the ANC went from 160 to 330 - FINALLY!

We dedicated Friday to sleeping as much as possible. Randy dozed in the recliner all day, getting a light fever on and off. He did try to eat breakfast and lunch but nothing tasted good. Then we ordered a pastrami sandwich from McAlister's, which was good enough to cheer us both up a bit. Later Dorian woke us up at 1:30 am to let us know Randy's ANC went to 880. There's something I don't mind being woken up for - praise God!!!

Saturday was another day of resting, although Randy got some laps in while I was showering at the hotel. Unfortunately his fever still came back mid-day. This prompted an evening visit from nurse Judy who accompanies the doctor on his visits. They've given it 72 hours so now they want to run more tests: re-do the blood cultures, get nasal swabs to culture, get an EKG, and do a CT scan. They are checking if something new has developed, or should they keep doing the same thing.

Thursday night - what's sleep anyway?

Having gotten approximately 2 hours of sleep the previous night, Randy was really, really tired. Thursday, per instructions, he walked a couple of laps and sat up most of the day. By 6 pm he called it a day and went to bed.

Of course people kept coming in, all of them very kind and doing necessary things that will make Randy better, and every one of them very much appreciated. This is not unusual; many people have similar experiences and it's just part of the journey. We are everlastingly grateful to God that we are here, where the kind staff know what they are doing. But mental and emotional gratitude sometimes bumps up against the purely physical need for just a little sleep.

Randy felt warm to me when he went to bed at so RN Ryan came to take his temp - yes, fever - and came back with Tylenol.

Shortly after Ryan came to introduce RN Dorian for the shift change. 

PCA Sophia to take vitals.

Dorian came with meds.

Phlebotomist arrived to draw blood.

Sophia took vitals.

Sophia took vitals.

Sophie took vitals. Randy had a fever again, even higher.

Dorian came to give him Tylenol.

Dorian came to hang a antibiotic IV. Heart rate was also elevated so Vital checks will be even more frequent! Randy put a cool washcloth in forehead and tried for a bit of sleep before the next checkup, which came in 30 minutes.