A personal update

I’m not going to post this to my FB page… I simply need an outlet, not necessarily for a lot of people to read my rant. If you happen to stumble upon it, forgive me for ranting. If you’ve followed my story at all, you’ll know all about my diagnosis: hemangiomas of the liver. I will not link to the post with my diagnosis. If you’re interested in knowing more, please scroll down.

The gastroenterologist I was referred to said surgery seems very likely with hemangiomas that are as big as mine. A friend, who also is a GI doc, has confirmed this. I was prepared for surgery, and after an emotional rollercoaster ride also very ready to see the surgeon to discuss further details. I was told this surgeon is brilliant… the best at Oregon Health and Science University (OHSU). I was first interviewed by an assistant or nurse. Then the surgeon came into the room, and we chatted a bit about my symptoms.

And here is where the story gets interesting… and maybe a little frustrating (to me anyway). After explaining to her how I felt, what my pain level was, and that I only needed my oxycodone twice a day, she showed me the pictures of my CT scan. The one hemangioma of concern is the one that pushes down and misplaces and misshapes my right kidney. There is also another bigger hemangioma that encroaches on my stomach. At the time I had just started experiencing some pain in that area, but no other symptoms. The surgeon asked if I felt less hungry, or if I experienced any other discomfort. I did not.

So, according to her, my case is a non-emergency. Take away the symptoms, and you basically have a few hemangiomas that we’re not sure if they’re growing or not, or what is going on with them. (My guess is, they are in fact growing… how else would the be 11cm big?) She thinks I should go back to work out, even do CrossFit, and in 6 months I should come back for another scan. If at that time the hemangiomas have grown significantly (approximately 2cm), then we call them rapidly growing hemangiomas, which would then warrant surgery. She says, my pain level was not a concern, and as far as she is concerned, I can take the oxycodone for the next 6 months. She did say, that she’ll do surgery, if I just couldn’t handle it anymore.

And that, right there, is what I’m struggling with. I love that she’s not a doctor who pushes surgery just for the heck of it. Obviously, I’d much rather move on without having my stomach cut open, my abdominal muscles separated, and about 3/4 of my liver removed… although I’m told the liver actually grows back in only 6 weeks. Pretty amazing, huh?

What troubles me, though, is the question, what pain level is enough pain to warrant a surgery? I haven’t worked out in 2 months, and the truth is I cannot do CrossFit. I can barely walk half an hour without having to take a break to sit down and breathe. As long as all I do is sit (like during AHS), I actually do fine without painkillers. There is pain, sure, but it’s not “killing” me. Now, that I’m back home, moving around more, cooking, cleaning, washing… I have more pain, and when I eat too much, I will have a stomach ache for hours. Yes, my stomach is now bothering me, too. I am usually not very hungry, I have a sour stomach almost all the time, and as I’m sitting here, it just hurts.

But still, I don’t need my oxycodone more than once or twice a day. And speaking of oxycodone… really, who wants to take that stuff for half a year?? So, I’m not an emergency. I have pain, but not enough. I don’t need surgery right away, but chances are I will need it eventually. My symptoms are stronger now. There is no doubt in my mind that these damn things are growing.

Rationally speaking, this is a no brainer. My GI friend has basically confirmed it for me. She recommends to go ahead with the surgery, especially considering that I have not worked out in almost 2 months, and that I really hate to take these painkillers. It all makes sense. And my husband and I talked about me scheduling an appointment for the surgery for October.

Emotionally, though, I feel insecure and very uncertain. I know this is a big surgery. I know that recovery takes months. And I know that I am not an emergency case. So, I guess I feel like this is big but small… and I’m stuck. I have been unable to call the surgeon to ask for a specific date. I feel paralyzed, but also silly for feeling paralyzed. And of course I know that none of these thoughts really make any sense. And yet, they keep me awake at night. I cannot seem to figure this out despite the fact that it really should be a no brainer… 😦

And so, another day has passed me by, and I haven’t done a thing. I cannot decide. Maybe the thing to do would be to chat with the surgeon again… I don’t know.

3 thoughts on “A personal update”

  1. Oh Ute… sending you the (((((((((BIGGEST HUGS))))))))

    Do you want to have tea? Come over? Chat? Anything? I am here for you. Always. And I love you. Lots.

  2. Ute, that is a tough decision. You are wise to take your time and it’s only human to feel stuck in a situation like this. I agree with your GI friend about going ahead with the surgery because this situation is interfering with your everyday life, and constant pain killers makes me nervous. That said, I also think it’s important to wait until an answer feels right to you.

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