August 22, 2020
The older I get (which seems to happen faster and faster these days!), time seems to be constantly slipping away – or maybe it’s just that I appreciate it more and want to hold onto it but can’t because it truly is like the sand in the hourglass, or trying to grip water. Today is day 100 since my transplant!!!! How is that possible?! {apparently it’s not bc I counted wrong and it’s really 88 – but for editorial purposes we are going to keep this 100 theme going okay?!} I actually thought it was another week away, but when I went to count the days as I was writing this morning I saw that indeed, TODAY is day 100! {no it’s not silly, don’t try to do this with a 3yo in the room} So, yeah, 100 is a big number that seems like we should celebrate or should be important but what’s the big deal about it? Well, around day 100 is when they usually do a bone marrow biopsy to determine how many of the cells in my marrow are now donor cells as opposed to my own. They have run chimerisms on my blood regularly and check two lines of information to determine just that. So far the first one (I still can’t remember what it’s called is even though he’s told me several times) has been consistently at 100% but the T-cells (the fighting cells – think big soldiers slaying the cancer cells) have not quite made it yet. They were at 85% last time they checked. This is totally normal as it takes them longer to come up. So, when they do the bone marrow biopsy they will be able to see more information that my blood can show them. This happens on September 3 (I will pause so you can add this to your calendar….{this is the actual Day 100}). The goal is for them to be at 100%. You wanna know what happens when they reach 100%? I knew you would. I get to start weaning off some of my anti-rejection medications (remember the pills that give me the shakes?)! So, that is what we are praying for – 100% after day 100!
So how am I doing you ask? Medically I’m still rockin’ the labwork and impressing the docs. My visits have been very boring as there is not much to talk about. Physically, I am a little more tired and weak than I have been in the past several bunch of weeks. My white cells and platelets are down some due to the oral chemo meds I have to take – these are the ones specifically for my type of Leukemia that I will have to take for at least two years and possibly forever. This is okay, they are not in a dangerous zone but I can sure feel the difference. Mentally/Emotionally? Do you want to go get a cup of coffee before we get into that one? I’ll wait… No, seriously, I am good – not in a bad place at all. But you all know I like to keep things real and raw here so I will share. I do this because mental health is important. And so many times people feel so alone with these struggles – they are embarrassing to talk about, and the fear of the consequences of talking about it can be huge. I just want to be the voice that says (whether you are going with cancer or not – junk is junk and we all have our own to deal with that pushes us to our limits) “You are not alone.” I don’t do well with stress. And since school has started back I have been more stressed. This is not new. I have been homeschooling for about 12 years now. I am covered up in kids and it seems not a minute of the day goes by that someone isn’t calling my name – whether that be verbally, or by their actions. I handle some of our business stuff because Marsh and computers don’t get along – he just wants to be outside, so all numbers and such are my department. There is the usual mom stuff of making appointments and scheduling everyone – we missed a few because of cancer and COVID. But when you throw being a cancer patient on top of that it seems to exacerbate the stress. And it would take several more paragraphs to unpack all of that. In addition to that, I have put on weight since my transplant and this adds to the stress and not feeling well. I have had some of my diet restrictions lifted so that should help some, but the fact that it is hot as six hells outside and because of my weakness, I can’t do much running these days. We don’t know if this is just diet/exercise-related (which would totally make sense) or due to some of my meds. Either way, it’s a pain. I had to buy new pants. I hate it. And let me share a formula with you: stress+physical issues+tired = feeling depressed. I know this, and have a handle on it right now and know what to do and who to turn to when I can’t. But if you are feeling this way or know someone who is – be encouraged, or encourage them that getting help is okay. This past week a friend of several of my friends took her life because she was dealing with depression. This breaks my heart. Look out for your people. Be aware of ways you can help and encourage.
Well, it’s Saturday folks. I am going to try to go get caught up on laundry – something that I never thought I would be thankful to do, but I am – I have been able to stay on top of the laundry monster for a while now, better than pre-cancer! I’ve also been cooking dinner most every night – amazing my family and even myself! God is good. He has given me 100 days more than we thought I would have. And we are thankful.
Cancermamma 