Two weeks after Shaun’s seizure last May, I sat at a doctor’s appointment of my own hearing the words “I also rechecked some blood levels I was concerned about in February. I hoped that they would be lower, but they have gone up. We will send in a referral to hematology for you.”
I had thought we were just checking my A1C. We’ve been keeping an eye on that, and that was my understanding of why I was giving away tubes of blood.
I’m not mad that she didn’t tell me she was concerned about some of the levels, because had it been nothing, she didn’t need to bring it up and we’d move on.
The problem was this: it was something. Something that I hadn’t even known about. I sort of felt bamboozled, if I’m being honest.
Hearing the words “referral to hematology” are quite scary to hear at anytime. They hit me like a ton of bricks because it was not even in the realm of my possible outcomes of this appointment. I had figured it’d be the time she would say “you’re not pre-diabetic anymore, congratulations…it’s full blown diabetes now.” I am thankful it was not that, and my levels are staying at the “pre” level and trending downwards over the last few blood tests.
To be honest, I don’t even know if or when I told Shaun. I scheduled the appointment for hematology and was able to get in, in the next few weeks.
The doctor I saw was super great. I had done research before my appointment and actually interrupted him when he told me what one of the possibilities could be. He seemed mildly impressed with my google doctorate.
He didn’t seem as concerned as my primary doctor was, maybe that’s his job in his field of doctoring. He basically said “these aren’t super high, so we can check them again in six months.”
If I am saying I left feeling reassured, I’d be absolutely lying. Appointments that you don’t get answers at are highly frustrating.
Having an “unanswered” appointment a month after Shaun’s seizure from Epilepsy was just more frustrating. We already have something in our life that gives us no real answers besides “Basically being alive can trigger a seizure. This medicine will help you, until the day it doesn’t. Good luck with life.” This sounds so dramatic, but honestly, that’s what Epilepsy IS!
Six months from June is December. I had my blood drawn last week. Technology is so great. You get a message within hours of your blood draw saying “your results are ready”. You open the results with a message at the top that says “not reviewed by your care team” and then scroll to the results.
I scrolled down with hopes that the levels had not risen.
Except, the levels had risen.
Now? Now I got to wait for two days until I saw Hematology again. I normally don’t love early morning appointments, but was happy I had this 8am appointment! I wanted to go over the “now whats” and get an answer.
Here’s the deal, the blood levels that have been high for almost a year can mean SO many things.
It can mean simply this: DUDE! You’re so overweight and fat. Your body is raising these levels because of you being obese. Lose weight. Get off your fat hind end and quit drinking McDonald’s cokes.
It can mean: You’re overweight and have wrecked yourself SO much that you actually DO have diabetes even if the other blood levels say that you’re only pre-diabetic. Way to go! You need to lose some weight, maybe you can get out of this before it gets worse. And you’ll need to probably check your blood and eat better and all the things.
It can mean: Your life is so extremely stressful it’s showing up in your blood work. Lessen your stress and you’ll maybe be better. (Lose weight while you’re at it, too!)
It can also mean: You have some sort of infection. Nothing else is showing it, but you do.
Those are the “good” meanings of my high levels.
Those levels can also mean: You have a bone marrow disorder.
Those levels can also mean: Welcome to the world of many that have heard it before you…”You have cancer.”
I have known all of these things since last May. They’ve been on my mind off and on since then. Not consuming my life, but they’ve been there. Life was very stressful in May, so it would make sense if this was because of stress.
My life isn’t nearly as stressful as it was in May. My levels still went up in the last six months. They haven’t gone up by an extreme amount, but they’re only 13 away from the level of “we absolutely have to figure out what is going on here”. Close enough for me.
When I went into my appointment last week I saw a different person. She came in and basically acted like this is not a big deal. I am sure she deals with people who actually have some big deal things going on, maybe it was nice to not have horrible news to give me.
BUT. This actually IS a big deal to me.
When I heard the words “this really isn’t earth-shattering” it made me feel a little bit better. At the same time, though, I wanted to be like “DUDE! I get that, but why are they still rising?”
She told me that we could do a bone marrow biopsy to see if we can figure out what is going on.
She glossed over that, I feel like, and went on to say that we could also just wait six months since the levels weren’t super concerning.
I’m not sure if my mouth dropped, but I do know that my eyes got wide.
WAIT? Six MORE months? I had to already wait the six months before this and it wasn’t super duper hard, but it was always on my mind. I did not want to wait ANOTHER six months knowing that my levels HAD risen in the last six and were close enough to being “high enough to actually be concerned” that I would be thinking about it more than I should be.
I know she wanted me to pick wait six months. I could feel it.
I could not pick that. I knew it wouldn’t be good for my mental health to wait another six months wondering “what the heck was going on with myself. Is this serious or just something that we can work through easily-ish?”
I told her that I would like to do the bone marrow biopsy.
My bone marrow biopsy was able to be scheduled for this coming Tuesday.
My bone marrow biopsy results appointment is scheduled for New Year’s Eve.
I always feel bad for the doctors who have to work on holidays. I am feeling extremely thankful for the doctor who will see me on NYE.
How am I doing with this?
I’m doing okay.
I’m hopeful this will give us an answer. That truly is all I want. An answer as to why this is going on.
Whatever the outcome is, I can’t change what it will be. I can’t spend my time worrying if it’s the “best” worst case scenario or if it is the “okay” worst case scenario or if it’s the worst, worst case scenario. Worrying won’t change anything and just cause me more stress. I can place the results in God’s hands that are in full control of this anyways.
It’s actually interesting to me, I have spent periods of my life wanting to not be alive. I am spending time right now thinking about how I absolutely do not want this to be something that would cause me to not be alive. If anything scares me, it’s that.
It’s interesting how circumstances can change our perspectives.
I know that life is short no matter what, we cannot take life for granted and all the general cliches surrounding this. But how often do we actually spend time thinking about them or living like they’re true?
I know that some of you will be frustrated this is how you’re hearing about this. I’m sorry. I hope you can forgive me and understand that my heart is to share this with people in the “easiest” way possible.
I mean, I sent a text to my mom, dad and sister to tell them. How do you call someone and say “well, I have a bone marrow biopsy this week. It could be nothing or it could be a really shitty something.”? For me? I can’t. I can’t do that.
The truth is, I even debated telling anyone this information.
Then I thought back to our miscarriages in 2009. In May of 2009 we told no one we were pregnant. Then had to tell people we miscarried a baby. It would have been so much easier if they had all known about the baby instead of telling them “well, we WERE pregnant…but not anymore.”
In August of 2009, we told people we were pregnant. Then a few weeks later, told them we wouldn’t be having a baby. The miscarriage was still hard, but having people know and be praying for us before finding out about not having a baby was meaningful to me. It made the situation feel “less alone”.
This situation isn’t awesome, I don’t like bothering people with not awesome information. I have learned for me, though, is that having people KNOW the information it is easier for me to walk through it. I don’t have to feel like I am walking through it alone. I don’t have to feel like I am hiding things from people. Especially a thing that could be a big deal.
Should we live life by the “could be” things? I don’t know.
I do know that we should live life together. Living life together means living life in the awesome and the not so awesome.
While I don’t quite know where this falls on the awesome scale, I do know that I love my people. I want my people “in the know” so they can know how to walk alongside of me in the week of waiting I will have.
This is how you can walk alongside of me:
Simply pray.
Pray for peace.
Pray for God’s will.
Pray for the good that WILL come out of this, no matter the outcome.
Simply pray.
Now for a disclaimer: I know that you love me. I know that you want to know exactly what levels were high and how high they were. I’m not going to let you know that information. Not because I don’t love you back, but because I don’t want super well-meaning people giving me advice that I am not asking for. I know you love your XYZ product and it’s helped you heal from all the things. Do not use this to sell to me, that’s actually rather disgusting.
I also don’t want you to be like “I’m so sorry. I’m praying for you.” But you don’t pray at all. You do not have to say a word to me. You’ve read this, you know the information. You don’t have to say anything. If you feel like you do, but don’t know WHAT to say/send, you can simply text me a heart. Or text me some hilarious—maybe borderline inappropriate meme. I love those.
I know that you know that your sister’s niece’s on her husband’s side neighbor’s pet sitter had this same exact issue and they did ABC to get better. I’m so glad for that. Right now, that’s not what I need or actually want to hear. If you’re wondering what I need or want to hear, go read the last six bolded sentences of the novel I wrote above.
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