Today I had my first Car Cry related to my health. I have shed tears before, but never in my car. I used to cry a lot in my car when thinking about my mom. It’s a good safe place to release. And this morning, after my first follow-up appointment with the rheumatologist, I did just that. Texted my friend. Let the tears flow and actually let my steering wheel take the weight of my head as I just didn’t want to hold it up anymore.
It’s not like I received devastating news. I was just needing an outlet and a flushing of my emotional system. Like my lung specialist, the rheumatologist was impressed with the improvement shown in my chest x-ray. Of the three additional symptoms I highlighted to her that are less lungs and more other stuff, two of them seem insignificant. The changes I am seeing in my menstruation is expected. The swollen knees don’t seem to have the signs indicating vasculitis in my knees. But my nose is a concern as the blood buildup in my one nostril can be an indicator of vasculitis. So I now await an appointment with an ENT (Ear, Nose, Throat) specialist for them to take a biopsy of my inner nose. What we will hope for, is that it just shows the signs of a super dry nasal cavity, as opposed to vasculitis.
The best case scenario overall, would be that my symptoms are contained within my lungs, the prednisone will reverse the damage from the inflammation and my lungs will heal. I can be tapered off of the prednisone and that’s it. Nothing else required. A specific diagnosis may not be ascertainable, but something somehow triggered the inflammation, whether it was the minocin or an infection, but now that I am off the minocin or the infection is gone, the symptoms wouldn’t return. The End.
A possible scenario that the nose biopsy will shed light on, is that I have vasculitis in my nose, which is a good indicator that overall I have vasculitis, and the debate of Do I or Don’t I will end. I do. If that is the case, then they would start me on the next level of treatment, which I knew would always be the case since they first mentioned this, being additional immune suppressants. But today was the first time the word “chemo” was used with me. And I think that is what made me so emotional. It just seems so SERIOUS. I know that what I have now is serious, but for whatever reason, that word carried heavy weight with me. I do recognize that I still have lots to learn about the “chemo”, as I am sure there are all different sorts and intensities and ways to describe actually what is happening to you. But that’s where we are at.
The rheumatologist stressed again that if they can avoid the additional medication (chemo), then they would. Because I am otherwise healthy and young. (She called me young!!) But she also wants to avoid NOT putting me on the next step, and then lessoning the prednisone but the symptoms returning and causing a yo-yo effect.
So now I continue to wait until I see the ENT. No timeline on this yet, but I was put as a “rush”, as she wants to know whether the “chemo” should start or not. Then I see the lung specialist the last week of October and the rheumatologist a month from now, depending on the results from the biopsy. I also got my pneumonia vaccine today and will get the flu vaccine once it is released next week. I will also get more bloodwork next week, and one of the things they are also testing for are signs of lupus.
But you know what? I bought new conditioner from Lush and now my hair smells like honey and is super soft. So there is still something to smile about.