(updated as charts weren’t coming through)
Ok – I definitely feel like I’ve rounded a corner and am feeling better. I have the ability to focus and I can actually put effort into typing things as well as inputting my daily numbers to I can be monitoring how I’m doing. As a recap, the goal coming into this procedure was to kill my existing infrastructure (white blood cells, etc.) and then replace with a version that had been through my RVD cocktail a few years back. So I wanted to give everyone an idea of what it meant for your numbers to drop. This is a totally non-medical description and will be fraut with mis-speaks – but hopefully it will get the point across.
First, you have your WBC (white blood cells) the parts of your body that fight diseases. These ‘proteins’ are what diagnose you as having MM. In my case I’m IgA on the protein and Lambda on the free light chain. So my IgA goes rampant and then dwarfs the other two (IgG and IgM). If I kill all of these off then who’s watching the store? When I cut my finger or if I get a nasal infection? After the RVD my cells were beaten back into submission and then the Cytoxan killed off most of the bad stuff and then it was harvested and put in a freezer. The freezing process also is bad for the “bad stuff”. So the hope is that what’s put back is back in ‘normal’ operating procedure and wont run rampant again.
The risk you run is that while all this is being done the chemo is affecting other aspects of your body and could cause other issues. In addition to your ability to fight infections and bacteria your ability to create blood cells, and platelets could be compromised. When that occurs you need to a level that is of concern you need to have a transfusion. So I wanted show everyone what it means with respect to your numbers.
This chart shows you my WBC numbers with green being the normal ‘hi’ and red being the normal ‘low’ (and the value of normal ‘low’). If you’re below 11 then you have an immunity issue and should be concerned. This is why the door of my room states mask and gloves must be worn.
My Platelets started in normal but have dropped off significantly. Luckily, 35 isn’t a level of concern yet (I believe our real “low” will be 10) and if I can keep that number over the next few days that will be good. If you had a number below 150 in a normal situation then you’re at risk of being able to repair yourself.
Hemoglobin is your red blood cell production facility. If this were to drop then the need for a blood transfusion could exist. Luckily things look like i’m keeping up there with where I need to be. But as you can tell, my numbers are still dropping and so I need to be cautious about what i’m exposed to as well as the bacteria and things my own body produces.
I’ve not gone into detail on this front but part of my daily regimen is a product called Nystatin, an anti-fungal product. This needs to be used 4-5 times per day in a variety of manners: mouth wash, swallow; an ointment for the nether regions (to control what gets created there); a powder for the nether regions and under arms (where potential fungal growth could occur. So it’s not just people coming in but you need to watch what you create as well!
These items I hope everyone finds of value. I hope it’s a way of thinking of what you need to watch and what you need to be cautious of when you’re in this position. However, it’s also important, and brings me back to one of my original rants and raves, it’s important to KNOW where you stand – even when you’re healthy. I was diagnosed with this disease because i had an elevated protein level. This was a regular doctor’s visit and bloodwork. Nothing special – if you’ve not been, if your friend hasn’t been, if anyone you know HAS NOT BEEN to the doctor in the last two years then take them yourself!
Thanks for reading!