All is Quiet on the Peterson Front

 Well, I haven't posted lately because things have been quiet. And in this situation, quiet is good...but also annoying. It's good because we aren't doing anything like running off to a "foreign land", but annoying because of the whole hurry up and wait thing I mentioned in my last post.

So since the last post, it's just been the usual stay at home mom stuff...chores, making sure our kid survives to his 18th birthday...ya know...the usual stuff. And to spice it up, been doing some chemotherapy.

When we got back from Houston my mom came to help out some and that was fun...mostly because I got to relive a little bit of my teenage years, where I did nothing and she cooked and cleaned and I played some video games....but then she left...sigh. 😩

I try to do all the things like I used to do mainly because often times I don't really FEEL sick, or I don't FEEL like chemotherapy is really taking it's toll. But then I try to do all the good old stuff, and I end up over doing it. So it's been a bit of a change to listen to my body and to actually take it easy when it says "sit the fnck down!!"

Like this week, for example, because of the chemotherapy, my blood counts have dropped (which is totally expected). And I may not be low enough to get a transfusion, but low enough to where I can feel myself being
tired more easily...and it's not the tired like you didn't get enough sleep, but the tired where you're winded after a work out. So, I dropped my son off to my in-laws who were so kind to take him so last minute. So then I went home, did some light cleaning and just took it easy for the rest of the day.

As a technically able bodied mom, I do feel bad, because it kind of felt like I was just "dumping" him onto them and flitting off to super fun things. But honestly, it was probably best for the both of us. He got to go play in a sandbox, and I got to do quiet things.

Welp, that's all that's pretty much gone on since my last post. Like I said, it's been quiet.

I'm also posting a pic of Stefan, Mikkel, and myself with my hair coming back! 😊

Being Home and Doing Treatments

I've been home for about a week, and it's been good! I got to celebrate Mikkel's first birthday on his actual birthday, and though the first ones are for the parents, I'd like to think that he at least enjoyed having his parental units at home. :)

He's walking now, and getting better every day! He's imitating more and gesturing new things...it's very cute seeing him go through these changes and hitting these milestones.

I didn't think about it until the other day about how thankful I would actually be to see his birthday and then to see future ones because never in my thoughts was this a possible scenario of what I would face.

I'm a little scared for him to be honest. When we were in the hospital the doctors put me at ease and said that AML is not something that I would need to worry about passing it on to Mikkel, and then I happened to be reading up on it, and then it said that one of the factors of a diagnosis is a family history of it. Now that I've asked Dr. Google, I'm freaking out again. So now I have to ask for confirmation next time I'm in the office and then there's the fear of hearing what I don't wanna hear and blah blah blah. But not just my doctors, but Mikkel's doctor as well said that I don't need to worry and there is a very unlikely chance that I would have passed anything along.

I love him to itsy bitsy pieces, but knowing what I know now, sometimes I question if I would still have him in the first place, because the possibilities do scare me but then I find myself fighting harder to kick this mess so there's that...

Anyway, we returned from Houston on Saturday night, then Monday morning was the beginning of my treatment. It's kind of what I would have had during my maintenance regimen, but the doses are a little higher since we're trying to kill stuff as opposed to keeping stuff away.

So my treatment is as follows: "chemo" pills as well as the rest of the other pills I need on a daily basis and then out patient chemo every day for 5 days every 5th week. So I just finished my first cycle on Friday, and will take a 4 week break and on the 5th week I do it again. That will go on for one or two times and then a biopsy will be done. In between cycles I'll have weekly visits with my doctors to do the usual checks.

Always nervous about biopsies. I'm one of the expect the worst, hope for the best kind of people. So it's the waiting that is the worst. One of my doctors said you just have to hurry up and wait. And it is so true.

So that's about all I'm doing now...hurrying up and waiting...

So a little more detail into what I'm facing here...with my AML I have the FLT3 mutation. So in a nutshell, through my reading and my experience of having it, it means that it's a more aggressive Leukemia. My Leukemia made this known at the beginning where I failed to reach remission after my first hospital stay and that biopsy after I was sent home. "I'm not going anywhere easily" it said.  So right from the get go it made itself known and then it changed up some of the treatment a little.

When someone has the FLT3 mutation they are definitely going for a stem cell transplant, and what happens when that is needed is that you need to wipe out the bone marrow completely essentially by getting a potent mix of chemo. I forget which two I used, but one of them was Dacogen. Then as your marrow is being wiped out, you get all these really fun side effects such as mouth sores, loss of appetite, loss of taste, nose bleeds (and other places if you are a lady), hemorrhoids, diarrhea, nausea, vomiting, skin peeling, skin darkening, and fatigue. I'm sure there are others, but I experienced all of these at some point.

These are just general side effects to expect when going through any chemo, and if you experienced any of them during general chemo, chances are you'd experience them again, and worse during pre-translate chemo.

I thought that I might luck out since I handled the general chemo on my initial hospital admission pretty well. But pre-transplant chemo really did a number on my body, and that's when the bulk of side effects happened. I remember sleeping almost non-stop and consistently being in that groggy phase of sleep (yuck).

So after your marrow is completely emptied out, you're now ready for you shiny brand new stem cells! The stem cells are put in your body much like any other blood transfusion. The stem cells go into your body and just know automatically where to go to make your new marrow. Now, as your marrow is responsible for making blood and stuff, your blood type may change. Mine changed from A+ to O+, since my donor is O+ (thank you to my dear brother for being my donor).

And then you just wait and recover. That's really it in a nutshell.

So like I said before, my current regimen is 4 weeks off, one week on of chemo, while I take my usual pills throughout the rest of the time...just hoping and praying that there is nothing but good news moving forward!

Losing Myself a Little

I'm going to take a moment and talk about what all this time has done to me. And when I say "all this time" I'm not just referring to the cancer time, but it starts a little before then, from around COVID. Not the very beginning of it, but some time in the middle, and then there's this whole cancer thing that hasn't helped.

I feel like I've lost a little bit of me. A little bit of independence. When we were made to work from home at the beginning, as a couple Stefan and I didn't mind it. Sure, we joked about wanting to kill each other, but in reality we're a couple the actually gets along both as a romantic couple and as friends. We never really craved nor fought for space or private time, though, of course, sometimes we did separate due to an argument, or so he could do him and I could do me.

And maybe that's what the issue was for me? Maybe the fact that it's so easy to be around him makes it easy to just not WANT alone time. I'm ok with playing on my computer while he's two feet away reading a book. I don't hate it if we both have our office doors open while doing some kind of work. I dunno.

But one thing I've always loved about our relationship is that through out our "couplehood" we were both Alex and Stefan, the individuals, and "Stelex" the couple. Yes, I have given us a couple name...look out Bennifer and Brangelina. We were both independent individuals who knew ourselves and then the couple who knew each other.

Now, as a person I still know who I am, but I can't do things alone so much anymore. That's where I feel like I'm losing my identity. I don't know if you can claim to know who you are as a person while claiming you're losing your independence in doing things, but I'm describing what it feels like, and that's what it feels like. Now, I get very anxious, more than I used to, if I was in an new or unusual situation. And should Stefan be in that situation with me, I tend to cling to him more. Like physically!

So that slowly started and continued with COVID. When we were at home all the time and the few times we got out, I had some anxiety where I wouldn't normally. And as COVID restrictions started lifting and everyone started to get back to normal, I was diagnosed...so then I wasn't able to (and still can't)drive. In general, I don't mind being chauffeured, but the inability to drive while capable is a little saddening to me. I'm honestly pretty sure that I don't know how to drive anymore.

I think this all hit me when we were parked outside of an H.E.B store. Stefan told me to go inside grab what I needed and he would finish up doing a work call and charge the car. I straight up told him that I can't go in alone because I don't know the store. Words I didn't think would EVER come out of my mouth. And as annoyed and shocked I was at myself, I still waited for him to finish up his stuff so we could go in together. It was like any other store I have been in...with labeled aisles and cash registers and associates...basically like any other grocery in North America. But I couldn't and didn't want to do it.

I love Stefan, and he's amazing! But the fact that he takes care of me so well makes it easy for me to be lazy with myself and dependent on him. The days I feel confident and say I'm going to do XYZ, he encourages me, but then I'll decide not to be brave that day and put off whatever that "brave thing" I needed to do was.

I don't love that I'm becoming dependent, or clingy, or whatever it is. It scares me...I wasn't raised to be like that, and I wasn't like that. But somehow I'm losing myself a little. I don't like the fact that some things I can do, and have done very well in the past that I'm now just having Stefan do, or having him come with me as I do.

I hope this is just all due to the compounding and extended seclusion from the outside world due to the COVID pandemic and now due to my immunosuppression.

Once this is all over and I'm permitted to go about my business, I'm going to make it a point to find me again. But right now, I don't know how to do that. I don't know that that's where the fight is at this moment.

Note: After reading this a few times, I noticed that it sounds like I can't so ANYTHING without STEFAN specifically...but not exactly it...it's more like things on my own. If I were to go to a new nail salon for example, I would not go alone and would find someone for girl time, and things like that.