Day +7 -'Rode Hard and Put Away Wet'

 'Rode Hard and Put Away Wet' is typically applied to abused horses, but that's how we feel today after a hard day, not withstanding the loving tender care we received. Deb and I have used the term over the years for 'exhausted.' That would be accurate terminology.

We arrived in clinic a little after 8 am. We had another tough night of fevers over 103 degrees. We were so delighted to finally have heat! 

Several visitors poked their heads in to check on Deb. Lab director Susann and her assistant cheered us up. APN Kristen, who is Dr van Rhee's right hand came by to share what she knew. Between the three visitors, many positive vibes were floating around  the room.

Deb first had her normal meds and belly shot. The cross-matched platelets arrived and were infused before we went up to the 8th floor for our appointment with Dr van Rhee and staff. Deb typically reacts to blood products so normally she gets meds to help her with that. This protocol eliminates them. 

Sharon, our wonderful  nurse of the last few days

Deb's Woozy meter was 8-9 today. Not fun! Deb's tummy has large red spots where each shot has gone in. There are small knots where the needle penetrated.

So, we went into the room to await Dr vanRhee. While we waited, a new gent showed up from the Carfilzomib administration. Deb had several rounds of Carfilzomib awhile back under another medical test program. Some new cautions and warnings have been discovered and Deb has to be briefed and sign a form saying she has been updated. New risks : heart damage and stroke possibilities.

When Dr van Rhee arrived, he had an entourage in tow, with APN Kristen, Dr Yi-Chang Liu, Susann from the lab, and our Research nurse. Dr van Rhee said Deb was doing very good but 'the proof of the pudding will be "have the myeloma lesions come back or not in a few months." That has been the case with each round of chemo Deb has had recently. She has gotten a rapid response to the chemo followed by rapid regrowth of the myeloma lesions.

He also told us to be prepared for another stem cell infusion without chemo toward the end of the program, perhaps between days 12 and 24. He also explained that the white blood counts we are seeing are 97 percent Killer Cells which do not have the complete ability that normal healthy white cells have. Therefore, Deb is still very vulnerable.

Now, here's Vern's take on what happened: Dr van Rhee is excited about how the cells in Deb are responding but this is not his first rodeo. He does not want to give us any unrealistic sense of success yet until things prove out more. After all, Deb is in a life or death battle and is enrolled a limited medical test. Dr van Rhee wants to keep us grounded in that fact. However, the entire team is ecstatic about the test results so far.

Dr van Rhee made some med adjustments and ordered a few new tests. 

After the session with the doc and staff, we went back to the 4th floor to get the two units of red blood. Deb was shot by then. Soon a tech arrived to get deep arterial blood samples to check lung function and oxygen carrying. Dr van Rhee is concerned about Deb's shortness of breath. The first tech stuck her with a long needle but left with an invalid test result. Soon Deb was greeted with another tech bearing needles. Oh joy!

cool damp towel cooling Deb's head

So tonight, more fevers and chills ahead. As a caregiver, it is scary trying to help Deb through the night but the medical staff says it's normal for the IL-2. 

Blessings!


White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3