It is physically, emotionally, and spiritually draining!!
I first went to a post hospital check-up with my regular doctor. Since the local hematologist had no answers for me as to why I had the P.E., it put my primary doctor on extra alert to try to help give me some answers. During his exam, he noticed a couple of moles that looked very suspicious to him. So, he decided to send me on to a dermatologist for a full skin check. Basically, because cancer is one of the leading causes of unexplained pulmonary embolisms, so this definitely needed to be taken seriously and addressed quickly.
During that appointment he also decided to refer me to another hematologist for a second opinion, and also to a neurologist to better understand the myoclonic jerks that started after my P.E. and what we can do about them.
The dermatologist appointment was the one that was completely unexpected. I didn't even want to consider that there was a possibility of cancer taking over my body to the point that it had already affected my blood without me even being aware of it. Just the whole thought would crumple me in a ball, and leave me feeling like I needed to puke because I knew that if that WAS my answer to why I had the P.E., my life was about to get a LOT worse, and I just wasn't sure if I was prepared for the battle that would then ensue.
Here are pics of the suspicious moles:
They went ahead and scheduled me to come back in 2 weeks later to go over my results, and that freaked me out even more because most people who had experience with mole removal said they were just called with the results, so WHY did I have an automatic appointment to review mine. It took a lot to get through those two weeks because uncertainty sets my anxiety on overload, and sadly, I ended up BACK in the derm's office by the next week because one of my mole removal spots (the first pictured above) was not healing correctly and the pain just kept getting worse.
Here is a pretty gross picture of what that experience was like:
Evidently it was supposed to be pink and fleshy looking in the middle, and the other spot was, but this one was not and it was really painful and angry looking. And it was aggravated even more by the fact that I am allergic to the adhesive from the band-aids, which just made for an even more miserable experience all around.
I am about a month out now, and though the other one has pretty well healed completely, this one is still not even close, and still just yuck. Doesn't hurt as bad thankfully, but it is not pretty to look at, for sure.
Anyway, after that LONG 2 week wait, where I had completely prepared myself for the idea that at least one of them was going to come back positive for melanoma (because I'd rather believe the worst and hope for the best, than get knocked off my feet thinking everything was OK and then find out it wasn't), I finally got my results.
NO CANCER!!! PRAISE THE LORD!!
The one that had trouble healing was actually completely fine, just had some fibrous tissue in it that made it look strange. The other one (the dark, irregular shaped one) was a compound dysplastic nevus and that basically is a pre-cancerous spot. It had not turned to cancer yet, but had a strong potential to and it did need to be removed.
I will go back for yearly skin checks now, and I am supposed to do monthly self checks to make sure no new moles are growing or old ones are changing.
Whew! That was over!!
That same day, I went to the neurologist. It was a decent appointment. The best guess at this time is that I have postanoxic myoclonus and that's basically where your brain gets damaged due to lack of oxygen for a period of time. It's considered common in people with pulmonary embolism, near drowning, or cardiac arrest.
Anyway, after that LONG 2 week wait, where I had completely prepared myself for the idea that at least one of them was going to come back positive for melanoma (because I'd rather believe the worst and hope for the best, than get knocked off my feet thinking everything was OK and then find out it wasn't), I finally got my results.
NO CANCER!!! PRAISE THE LORD!!
The one that had trouble healing was actually completely fine, just had some fibrous tissue in it that made it look strange. The other one (the dark, irregular shaped one) was a compound dysplastic nevus and that basically is a pre-cancerous spot. It had not turned to cancer yet, but had a strong potential to and it did need to be removed.
I will go back for yearly skin checks now, and I am supposed to do monthly self checks to make sure no new moles are growing or old ones are changing.
Whew! That was over!!
That same day, I went to the neurologist. It was a decent appointment. The best guess at this time is that I have postanoxic myoclonus and that's basically where your brain gets damaged due to lack of oxygen for a period of time. It's considered common in people with pulmonary embolism, near drowning, or cardiac arrest.
It's curious in my case because I didn't have to be resuscitated or intubated, but without doing a ton of testing, this is the most likely explanation for now since they started directly after the P.E. So, they are treating me with anti-seizure medication (levetiracetam/Keppra) for a few months to see if that improves them. (Myoclonus is a form of seizure as well, but typically people with true myoclonic seizures get them in childhood, but they can be caused by brain injury.)
That med is actually helping quite a bit. I still have some during each day, but it has slowed them way down, and I am able to sleep much easier now, thankfully, which is what I was really hoping for.
So, now marking cancer off my list (THANK YOU, JESUS) and getting my myoclonus treated, the next appointment was with another hematologist to hopefully help give me an idea of WHY the pulmonary embolism happened, and more importantly, how to keep it from happening again!
This appointment was sort of a nightmare. For those who have never seen a hematologist (which is a blood doctor), they are usually both Oncologist and Hematologist. And, of course, an oncologist is a doctor specialized to treat cancer. So, going to a hematologist appointment is always intimidating for me because I have to share the waiting area with people who are going through all sorts of horrible and very scary things (not that my P.E. hasn't fit that same bill, obviously, it's just different), and it's just really humbling and overwhelming. I can't help but feel blessed for my problems, but strangely guilty too all at the same time because it's not fair that these people have to go through whatever they are going through.
This appointment was at Vanderbilt Hospital, so that experience was just magnified that much more too. The people coming here were numerous and obviously dealing with a very wide variety of horrible cancerous conditions. And there I sat right in the middle of them, unable to ignore the magnitude of the problems these people are truly facing, and crumbling under my compassion for what these people must be really going through. It's truly heartbreaking.
They told me to get there an hour before my appointment time because it would take that long to get registered. And then told me to expect to be there for about 2-3 hours total, not knowing that every bit of that would be JUST WAITING to see a doctor.
My appointment was schedule for 12:00, so I had to be there at 11:00. Not enough time to have lunch before going in. And then I didn't even see the doctor until 2 p.m. I had a headache starting the day out, but by the time he finally came in the room, I was in full blown migraine mode, and was so sick that I felt like I needed to puke.
I only really had one question for this doctor..."Why/how did this pulmonary embolism happen?"
My body has been strange for years, and I will tell you, I have had this weird feeling in my gut for a long time that I was going to die young. It's just something that has been in the back of my mind for a long while that I just can't seem to shake, mainly because I have been through so many STRANGE, UNEXPLAINED, and SCARY events. I've searched for answers many times, but I keep coming up empty.
The doctors tend to get focused on just one symptom going on with me, ignoring the big picture and how I have multi-system, unexplained dysfunction going on.
And the worst about it is that a lot of times it makes me feel like I'm crazy and that it's all just in my head. Though, I know logically, these things and events are real and have happened! It's just hard when you keep having weird stuff happen to you, and your doctors really just have no idea or any answers to offer at all. It's helpless and lonely.
My current suspicion is that I have some auto-immune disorder, like possibly Lupus, that just has not been detected yet. Honestly, I don't really care what answer or "label" they give me, I just need to know WHAT it is, so that I know HOW to treat it and prepare myself appropriately.
Sadly, by the time the doctor came in, within just seconds of him starting to talk, it was clear that he was not going to be able to (or even interested in) helping answer my biggest question. He reminded me that for the majority of blood clots, there is usually no known cause (called unprovoked pulmonary embolism), and it just sort of happens in a "perfect storm" scenario. But, we can't even explain what my "perfect storm" really was.
He was willing to reevaluate the need for continuing with blood thinners after 6 months, but wants me to see a cardiologist for testing first. He said ultimately the decision would be left to me depending on what risks was I more willing to live with...risk of clotting again by coming off of the meds or risk of severe bleeds for being left on the meds. And with someone with history of BOTH of these scary events, HOW am I supposed to make a decision like that?!
And he said that it just depended on what my "goal" was. If my "goal" was never to clot again, then I should stay on the blood thinners.
Since my head was splitting in two at that moment, I couldn't even think through half a thought in that room. However, as I've thought about those words since, I know what my "GOAL" is now though, and I'm not sure why this might seem strange or unreasonable, and really it should have been pretty obvious to any doctor.
My GOAL is to be HEALTHY and hopefully be able to live long enough to see my children grow up. That's my goal. Whatever has the best possibility of getting me THERE!!
So, now marking cancer off my list (THANK YOU, JESUS) and getting my myoclonus treated, the next appointment was with another hematologist to hopefully help give me an idea of WHY the pulmonary embolism happened, and more importantly, how to keep it from happening again!
This appointment was sort of a nightmare. For those who have never seen a hematologist (which is a blood doctor), they are usually both Oncologist and Hematologist. And, of course, an oncologist is a doctor specialized to treat cancer. So, going to a hematologist appointment is always intimidating for me because I have to share the waiting area with people who are going through all sorts of horrible and very scary things (not that my P.E. hasn't fit that same bill, obviously, it's just different), and it's just really humbling and overwhelming. I can't help but feel blessed for my problems, but strangely guilty too all at the same time because it's not fair that these people have to go through whatever they are going through.
This appointment was at Vanderbilt Hospital, so that experience was just magnified that much more too. The people coming here were numerous and obviously dealing with a very wide variety of horrible cancerous conditions. And there I sat right in the middle of them, unable to ignore the magnitude of the problems these people are truly facing, and crumbling under my compassion for what these people must be really going through. It's truly heartbreaking.
They told me to get there an hour before my appointment time because it would take that long to get registered. And then told me to expect to be there for about 2-3 hours total, not knowing that every bit of that would be JUST WAITING to see a doctor.
My appointment was schedule for 12:00, so I had to be there at 11:00. Not enough time to have lunch before going in. And then I didn't even see the doctor until 2 p.m. I had a headache starting the day out, but by the time he finally came in the room, I was in full blown migraine mode, and was so sick that I felt like I needed to puke.
I only really had one question for this doctor..."Why/how did this pulmonary embolism happen?"
My body has been strange for years, and I will tell you, I have had this weird feeling in my gut for a long time that I was going to die young. It's just something that has been in the back of my mind for a long while that I just can't seem to shake, mainly because I have been through so many STRANGE, UNEXPLAINED, and SCARY events. I've searched for answers many times, but I keep coming up empty.
The doctors tend to get focused on just one symptom going on with me, ignoring the big picture and how I have multi-system, unexplained dysfunction going on.
And the worst about it is that a lot of times it makes me feel like I'm crazy and that it's all just in my head. Though, I know logically, these things and events are real and have happened! It's just hard when you keep having weird stuff happen to you, and your doctors really just have no idea or any answers to offer at all. It's helpless and lonely.
My current suspicion is that I have some auto-immune disorder, like possibly Lupus, that just has not been detected yet. Honestly, I don't really care what answer or "label" they give me, I just need to know WHAT it is, so that I know HOW to treat it and prepare myself appropriately.
Sadly, by the time the doctor came in, within just seconds of him starting to talk, it was clear that he was not going to be able to (or even interested in) helping answer my biggest question. He reminded me that for the majority of blood clots, there is usually no known cause (called unprovoked pulmonary embolism), and it just sort of happens in a "perfect storm" scenario. But, we can't even explain what my "perfect storm" really was.
He was willing to reevaluate the need for continuing with blood thinners after 6 months, but wants me to see a cardiologist for testing first. He said ultimately the decision would be left to me depending on what risks was I more willing to live with...risk of clotting again by coming off of the meds or risk of severe bleeds for being left on the meds. And with someone with history of BOTH of these scary events, HOW am I supposed to make a decision like that?!
And he said that it just depended on what my "goal" was. If my "goal" was never to clot again, then I should stay on the blood thinners.
Since my head was splitting in two at that moment, I couldn't even think through half a thought in that room. However, as I've thought about those words since, I know what my "GOAL" is now though, and I'm not sure why this might seem strange or unreasonable, and really it should have been pretty obvious to any doctor.
My GOAL is to be HEALTHY and hopefully be able to live long enough to see my children grow up. That's my goal. Whatever has the best possibility of getting me THERE!!
He said, "You seem to be having a hard time accepting that there just really isn't an answer to give for this sort of thing, and I don't know how to help you with that."
And he's right, I DO HAVE a hard time accepting that, since this is MY LIFE we are talking about and it's ME that has to live with the consequences of what happens because of whatever is going on within me and the choices we make on handling it. And I really don't think that's unreasonable!!
And he's right, I DO HAVE a hard time accepting that, since this is MY LIFE we are talking about and it's ME that has to live with the consequences of what happens because of whatever is going on within me and the choices we make on handling it. And I really don't think that's unreasonable!!
My life has been changed significantly because of this, and I just don't know what the best thing to do is. I'm tired of chasing rabbits. I'm tired of doctor appointments and dead ends. I'm tired of being only 35 and what should be the prime of my life, and feeling like I'm dealing with things that I shouldn't even have to think about for at least 30 more years. Not even feeling comfortable planning for the future at all, because I don't really feel like I'm even going to be here for it. I know we all have to remember and be prepared for the fact that none of us are promised tomorrow, but I just feel like my chances are much higher than average right now that my tomorrows really are greatly, greatly limited.
I feel like it is seriously going to take me dying in order to be taken seriously by these doctors, because obviously ALMOST dying isn't enough. And I wish that even if I couldn't get an answer to help improve my own health, I could at least get some answers for my children so THEY won't have to go through all of the crazy and scary things I have had to too.
So, yeah, a lot of this post isn't really cheerful, I know. I'm sorry. I'm just tired and confused and I'm on day 2 of a monster of a headache, but I'm still trying to push forward no matter, and just live each day the best that I can.
The one thing that keeps me sane and strong through all of this though, is that I know that God is in control. If I didn't have that, I would be a real mess. I obviously can't put my faith in the medical community because they are just human...just like me, and with that comes obvious limitations. But, Jesus...the Creator of the universe...can be trusted. He knows exactly what is going on with me, and He is with me every step of this. He knows my tendencies, He knows my fears, He knows what I need, and He knows what my kids need. No matter what happens in my life, I have been assured that He is working it for my good (Romans 8:28). So, I don't have to fear tomorrow, because He has given me the ultimate Hope and promise of His eternal love (John 3:16-17)!!
Thank you, Lord, for just continuing to be with me through it all. I know You are good, You are faithful, and You can be trusted. Please sustain my strength and faith in my moments of weakness and fear. Let me feel Your presence with me always, and help lead me in the paths that You need me to go and equip me to do the work that You have called for me to do. I thank You, and praise You always!! In Jesus precious name, I pray. AMEN!!
I feel like it is seriously going to take me dying in order to be taken seriously by these doctors, because obviously ALMOST dying isn't enough. And I wish that even if I couldn't get an answer to help improve my own health, I could at least get some answers for my children so THEY won't have to go through all of the crazy and scary things I have had to too.
So, yeah, a lot of this post isn't really cheerful, I know. I'm sorry. I'm just tired and confused and I'm on day 2 of a monster of a headache, but I'm still trying to push forward no matter, and just live each day the best that I can.
The one thing that keeps me sane and strong through all of this though, is that I know that God is in control. If I didn't have that, I would be a real mess. I obviously can't put my faith in the medical community because they are just human...just like me, and with that comes obvious limitations. But, Jesus...the Creator of the universe...can be trusted. He knows exactly what is going on with me, and He is with me every step of this. He knows my tendencies, He knows my fears, He knows what I need, and He knows what my kids need. No matter what happens in my life, I have been assured that He is working it for my good (Romans 8:28). So, I don't have to fear tomorrow, because He has given me the ultimate Hope and promise of His eternal love (John 3:16-17)!!
Thank you, Lord, for just continuing to be with me through it all. I know You are good, You are faithful, and You can be trusted. Please sustain my strength and faith in my moments of weakness and fear. Let me feel Your presence with me always, and help lead me in the paths that You need me to go and equip me to do the work that You have called for me to do. I thank You, and praise You always!! In Jesus precious name, I pray. AMEN!!
I also thought I would share some of the CT pics here from the night I was admitted in the hospital for the pulmonary embolism. The actual scan had 100s of pics on it, because a CT is a slice-by-slice image of the body. So, these were a few that really stood out to me:
