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On my way to Mayo Rochester MN: Ready for answers but nervous

Posted by kasey78 @kasey78, Jun 8 2:46pm

I would be lying if I said I’m not nervous. I have my first appointment tomorrow morning , hematology evaluation. No itinerary, it’s the not knowing whats going to happen, how long I’ll be here, and will I finally have answers. I say I’m ready for answers, but now that it’s here….. not sure I’m ready 😓

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Janell, Volunteer Mentor | @jlharsh | 14 hours ago
In reply to @kasey78 "Update No tumor or aggressive cancer was found on the scan 🙏🏼 — but I still..." + (show)
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Update

No tumor or aggressive cancer was found on the scan 🙏🏼 — but I still don’t have an answer as to why my spleen is enlarged.** 🤬

I was vomiting for about 3 hours with diarrhea again, so I ended up getting infusion therapy at Mayo Hospital today. 🤦🏻‍♀️ looking to make sure there isn’t a virus, especially since I seem to get sick so easily.

As for the blood issue, they are still not completely ruling it out. I’ll be doing blood work from home and following up from there. If my platelets drop to 100, I’ll need to go back sooner and possibly have another bone marrow biopsy.

They wanted me to come back next month for TENS therapy and then return for a fibromyalgia consultation. I’ve decided I’m not going back for either one right now. I feel like TENS would only mask the pain for the time being, and I still want answers as to *why* I’m having this pain and why my spleen is enlarged.

So… no cancer found, which is definitely something to be thankful for 🙏🏼❤️, but unfortunately, I’m still left with a lot of unanswered questions.

One day at a time. 🫶🏼

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@kasey78, what a relief that the scan did not show a tumor or aggressive cancer. At the same time, I understand why you’re frustrated to still be left without an explanation for the enlarged spleen and pain.

Your comment about not wanting TENS because it may only mask the pain really struck me. Before deciding not to return for the TENS therapy and fibromyalgia consultation, would you consider asking your Mayo doctor what they hope to accomplish or learn from each and how they fit into the rest of your evaluation?

I ask because it took me a long, long time to understand this part of my own Mayo experience. Mayo offered things, but they didn’t push. Eventually I learned that when my team offered me something, I should at least find out why—and often I was glad I took them up on it, even when I couldn’t initially see how it fit.

I also had to learn to prioritize making progress and feeling better while still looking for answers. Those didn’t have to be either/or. I still don’t know with certainty how much of what I’ve experienced is fibromyalgia, but what I learned through Mayo’s fibromyalgia program helped me tremendously through some very difficult years. Accepting that help didn’t mean other symptoms or concerns stopped being investigated.

I wonder if the same could be true here. How you respond-or don’t respond-to something they try may help your team better understand and manage your pain. And getting some pain relief wouldn’t make your enlarged spleen or blood abnormalities disappear; those are still there for your doctors to follow.

If you’re interested, I shared more about how difficult it was for me to learn to trust this process in my own Mayo journey:
- Don’t leave the good parts out: Meet @jlharsh
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/dont-leave-the-good-parts-out-meet-jlharsh/
Would you consider asking your doctor how the TENS therapy and fibromyalgia consultation fit into the bigger picture before closing the door on them?

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