Some Call it God, Some Call it Luck

 So I'm still in the hospital...it's been 3 weeks since my routine clinical visit turned to a few days at the hospital. I can't say I'm too surprised, only because I've always been a long recover-er. At this point, we're just waiting for my white blood cells to come back to finish up clearing out the infection. So that's the hold up...pretty exciting right? It's not. As much as I love chilling hard and doing nothing, 3 weeks seems to be a bit much, and I do miss Mikkel. So no exact word yet of my release into the wild, but I'm ready for when the say go.

In my last post I couldn't remember the name of the extra testing that they did, but now I do. It is called a Karius test. Just wanted to get that term out to you like I said I would.

Anyway I was speaking to a nurse today and we discussed how patients have unfortunately passed because their Leukemia, specifically the acute type, AML or ALL, were caught too late. It usually presents itself as an ongoing cold, with some weight loss and night sweats. And a lot of people, especially the young folk don't think much of such symptoms other than being a cold and then just taking the cold medications. I was one of them. I took a bunch of COVID tests, and after they all came back negative I just had a steady diet of Robitussin, cough drops, and Nyquil. I remember having to drop off Mikkel to his grandparents, or have Stefan do nights and morning because I wasn't feeling well. I actually look back at my phone and see pictures that I was taking with Mikkel and knowing that at that time I was not feeling well, but not having a thought of this is where I'd be. Kinda sends chills up my spine. But all I was thinking at the time, is that it's just a cold that I need to break.

We were even supposed to go to Jamaica within just a few days of my unexpected hospital visit. I even expedited Mikkel's passport for that trip. I kept saying that maybe it was my body just needing a break from being a new mom, or quite simply a cold. and then the Jamaica trip would be a nice break. Even my knee was swollen at the time, and we just talked about getting a wheelchair. But it all came down to my knee getting pretty bad and sprouting a fever of 103/104. 

And now we are here.

As I am replaying my memories of my initial diagnosis, I keep thinking how lucky we were for things to have played out the way they have. Of course my current situation SUCKS! But it could have been much worse.

Hear me out...

We are lucky that we moved to Orlando before this all started, where Stefan's folks and my folks are close by to help when needed; we are lucky that my knee and fever showed up when they did because I would have gone on my merry way to Jamaica and I just don't want to think what would have happened if we went down that road. I'm lucky to be responding so well to the medications they have given me, and with my relapse, I'm lucky I went back into remission.

Now, I use the term lucky, but truth is I believe in God and know it's more than just luck. I'm not here to preach in this post, but just saying that with path I've been down from my initial diagnosis to now, I don't feel like I'm alone in this. I mean in a spiritual way...I'm definitely not alone in this Stefan has NOT left the hospital for more than a day! 😩 lol!

But seriously all these things that have happened, all the little road blocks, I've ended up finding a way around them, and I can't say for sure that it's all luck. That said, I don't believe in "praying the sick away", but I believe that these doctors have been given the tools and talent to help cure patients.

Sure some days I have "less faith" than others where I question more because I'm scared, or I'm a little more angry at Him, like a kid at a parent because I'm frustrated at where I am, but that's just part of the journey. I have found that it's the tough times where you have "less faith" that you need to pray more.

I was praying at one point for a sign that I was going to be ok, and kinda stopped praying for that specifically because I didn't see any, nor would I have know that I saw one if it hit me in the face. Then I just happened to be thinking back. On my initial visit, and every single hospital visit since, both here and MD Anderson, I was asked about setting up an advanced directive. I keep saying yes, not really because I WANT to fill it out, but I figure it would be good to look at if nothing else. I haven't seen anything to do with any advanced directive yet, and I realized that probably was the sign that He's not done with me being here yet. 

And talk about praying...when I relapsed, we prayed for a miracle...and it happened I went back into remission. The doctors said that they haven't seen a patient in my situation go back into remission just based on the two medications that I was taking.

I do often get scared because even though I feel like God is with me on this and my prayers are being heard, I still never know what will happen. I just have to roll with the punches and know that Big Man is with me.

So yeah, I guess that's my little "sermon" and it all came from a discussion I had with a nurse this afternoon.

I'm just waiting here for this infection to clear out properly, and so I can get more chemo and then some booster donor cells!

Welp, I hope you guys have a great evening. Stay awesome!!

Back in for a "Quick" Hospital Visit!

 On Monday Feb 27, I went to the clinic for a routine appointment where I get my labs checked, and if I need anything like a blood transfusion I just get it done there. So that day I needed a platelet transfusion which is totally not out of the ordinary. I've received them several times before, no big deal.

Now, what could happen is that patients can have an allergic reaction to these transfusions. Not to say they are allergic to the platelets and can't ever get them, but for some reason there's something about that specific bag that can cause a reaction. That is my understanding at least. I never really paid attention to all that because I never needed to. Anyway! I got the bag and shortly after started to have some small groups of hives, and then a little bit of the nose drippies and the tired eye feeling you get with allergies. On top of all this I also got a fever, which can also be an allergic reaction to a transfusion.

Let me take a quick pause right here so that I may explain the whole fever and immunocompromised body here. While in this state of a compromised immune system, patients are encouraged to take their temperature throughout the day. Rule of thumb is at least when you take your medication. What we, the patients, are looking for (or not looking for), is a temperature of 100.4 degrees. When that happens, we call the clinic and then head over to the ER so that we can get checked out because it can be a sign of an infection.

Ok, back to the clinic...

I had the hives, and the nose and eye issues, and then the fever. All of what was aligning with the run of the mil allergic reaction. But because of the fever alone, I had to be admitted. And because of the fever alone I was having vials filled with blood so they could use them to grow cultures to see if there were any infections. Before we were transported to the ER, the nurse who was taking care of me mentioned that she didn't think the fever was related to the allergic reaction because my temp was kinda high before everything started, though not a fever. And she was sooooooo right!

I got admitted and then ran a fever on and off, but mostly on for 48 hours. Most of the time I felt like I didn't have one so it wasn't a state of me feeling off or anything. I was just "relaxing" while I was just waiting for the fever to break and then I could see if there were any cultures so that I could go home,

So now with the cultures, they are looking for an infection my body may have picked up. That way the doctors can ID the damn thing, and then give me the right drugs to get rid of it. The plan was that the cultures would be back in 72 hours. So then I could go home around Thursday/Friday. Then with the timing and all, I was due for another bone marrow biopsy...so then my doctor said that since I was there they should just keep me til Monday so I could do the biopsy out of convenience. Which, I do hate being in the hospital, but it really is more convenient getting an appointment set up as an in patient than as outpatient.

So that Monday (3/6) is rolling around, nothing is still coming up on the cultures which is good, but bad because additional testing has to be done. So, they drew blood on Friday (3/3) for another test that I will have to get the name of, because I can't remember it right now, but it had to be sent off to CA and then the results wouldn't be back until Wednesday (3/8). So then we were looking at a busting out time of Wednesday. So by Tuesday the results came back and from CA as well as all the additional testing such as CT scans and sonograms for blood clots and the results showed that I had a bacterial infection from Klebsiella. The CT scans showed what I thought were two ingrown hairs as the infection site.

You might be thinking how I could possible do that. Well, my hair has been coming in, and they really did look like two in grown hairs. during the hospital stay the infection reached it's peak and they were clearly not two in grown hairs, but things have settled and I am getting back to normal.

My biopsy results show that I'm still in remission! Which is a huge relief. I also did a lumbar puncture to check if there was any cancer in the spinal fluid, which sometimes happens with AML, and that came back clean...so all good news.

With all that said, it is now 3/10, and I have no idea when they will release me back into the wild. they are still waiting for the infection to clear up some more, and waiting for my counts to come back up so I'm not tooootally vulnerable.

I miss my little one very much, but I have to keep in mind that I'm playing the long game for him and my husband, so staying positive and thankful that I get to video chat him every day and that he can come visit me...and also thankful that my husband stays here with me every day. I keep reminding him that I don't mind if he goes home to sleep in a real be but St. Stefan has refused to leave me alone.

That's what I got today for my "quick" hospital visit...stay awesome on the outside everyone!

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.

I'm a Fncking Unicorn!

 

So today I found out I'm a unicorn...

The last biopsy I did on 1/17/2023 showed that there was 30% of Leukemia in my marrow. When we came to Houston I did another biopsy for their own tests on 1/23/23 (yeah, the totally awake, just numbed one), and those results showed that there is .05% of Leukemia in my marrow.

That means I'm in remission again, with trace amounts of Leukemia.

The good news is that I'm in remission, the bad news is that there is still trace amounts. What that means is that there is currently no active Leukemia running around in my marrow nor bloodstream, but because there is still that tiny little bit hanging around, I do have another chance to relapse. It's possible that it may not happen even with the trace amount, but more likely it would happen. So the plan is ideally to kill the last bit and live happily ever after.

The part that freaks me out a little is that I'm a unicorn. A unique case for this. Here is why: 1. I relapsed in such a short amount of time; 2. I am young; 3. My body responded extremely well to the medications that I was given in response to my relapse, which brought me down to the .05%.

Now, according to the doctor a relapse so close a transplant doesn't happen often, but it sometimes does. And then the cocktail that they give me, though a potent mixture, doesn't usually work so effectively on relapse patients. And then on top of all of this is my age. Should any of these things happen, it usually happens with patients twice my age (65 years plus). So I have now puzzled the world's best cancer doctors!

I'm not sure if that's something that I am more proud of or scared of...

I have often found comfort in knowing that I'm NOT the fncking unicorn, that my situation is NOT the path less traveled. So now I have to find comfort in something else, like the fact that because of my age they still have options, or the fact that there are options at all.

The point is that even though I'm a unicorn it's not the end. I'm not that unicorn you see in Harry Potter getting it's blood drank by Voldemort. Which now I find weirdly symbolic...cancer = Voldemort,  Alex = unicorn. Maybe not in that particular situation, but you know what I'm getting at!

Anyway...my Leukemia doctor is hopeful and I have fight! I have been prescribed a cocktail of pills and chemo and will be starting that in the near future. Then we all know what the hope is then.

Here I am! a FnCKING FIGHTING UNICORN!!! (WEEEEE SAAAAAAAW, WEEEEE SAAAAAAAW => my unicorn sound or whatever) 

Everything is Bigger Y'all

We're in Texas! Let me fill you in on how we got here...

At my last appointment with my initial doctors on 1/19/2023 they told me that my Leukemia came back, and I had 30% of Leukemia in my marrow. That was on a Thursday. On Saturday we packed up, dropped our little one off to his grandparents and drove 4 states. We were in Houston on Sunday afternoon for our Monday appointment.

I'd like to take a quick second here and just give a shout out to Tesla...we got the month trial of auto driving and it was quite helpful for us (even though it was just my husband driving).

We've been here doing tests after tests after tests everyday in the hospital. One of which was a bone marrow biopsy where I was not put under anesthesia, nor sedated! My first introduction to a biopsy I was put under. The one after that they said they weren't going to put me under, but sedate me. And now this one had neither, but just to local numbing shot. It seems that my biopsies are just getting progressively worse...or badass I'd like to call it. 😎

Anyway...here we are in TX where we are still trying to think of we are going to be here longer than a week or so. Our return date keeps getting pushed back a day at a time and I'm afraid it will be us just staying here for a few months. It wouldn't be so bad if I got to clean my house some and didn't leave in a matter of a day.

The hospital is definitely different. It's huuuuge! The medical complex could be the size of downtown Orlando easily, and there are much more people here...but none of this should surprise me since it's MD Anderson, the best in the world! But it still does.

Sitting in the waiting room is interesting. I see lots of people with Leukemia like me (duh), but when you listen to them talk about their stories you'll find that some of them don't have just Leukemia. But maybe one or two other types of cancer. And it makes me feel both comforted and out of place.

I keep thinking "Well, ok. All these people have so many issues and I'm here with my one type. I gotta be one of the easier cases so I'll definitely be ok". And on the other hand I feel like I don't need to be here because it seems like I'm an easy case. That said cancer is cancer...everyone should be able to get the best care possible.

This one older guy was listing off all the things wrong with him outside of cancer...replaced hip, respiratory issues, some weird surgeries I've never heard of, and catching COVID. At the end of the list the lady across from me whispered to her husband, "geez he's on really bad shape"

I laughed and I thought to myself, "Lady look around...were in a cancer center... we're all in bad shape" but seriously that man's list was longer than Rapunzel's hair (I don't know any long thing analogies so this is the best you're gonna get...🤷‍♀️).

All of these people both listen, speaking and commenting are super nice...and happy for that matter. Not happy about the situation, of course, but happy people. I've found that once you've been diagnosed with cancer, you're officially enrolled in a mind game. A mind game of how to balance your positivity and seriousness.

So I'm still here doing tests and waiting to speak follow up with my doctors in my future appointments. First day here I got 23 vials of blood drawn. I'd say that's a personal best! 😎