It's been a couple months!! Wow! I can't even begin to tell you how many times I thought about writing an update, and then for whatever reason, I didn't end up doing it. It has been a year since my journey began, and I've had 41 Dr appointments since. It's crazy to think that a year has gone by. It seems like its been so much longer (can't imagine why 😂 )

Since my last update, I have had a few appointments. September 29th, I had a procedure done to remove one of my biopsy clips. For those who haven't had internal biopsies done, generally they leave a "marker" in the area they biopsied. When they put the marker/clip in, it's surrounded by a small amount hydrogel. Usually, the gel will dissolve in a month or two. The reason they made the decision to remove the marker, is because they had been treating a large area with such high doses of kenalog (steroids) and a lot of the area had at least shown a little improvement, except for the area where the marker was. Sometimes, people have allergic reactions to the marker, or their bodies "reject" it, so they decided to take it out to make sure it wasn't causing any problems. After they took it out, they were shocked to see that not only was the hydrogel still intact (almost a year later) and had attached itself to tissue. I did have my Dr. take some photos with my phone, and she asked if i would be willing send them her for reference. After I recovered (took about 2 weeks to fully recover) I had one day of crazy intense pain, and then two whole weeks with NOTHING! It was incredible!! I went back to Mayo on Monday, Nov 13. It was the first time that I didn't have ANY needles! No aspirations and no injections! (I am trying to hold off on any more steroids for a while-Ive had quite enough of the side effects) My doctor was very satisfied with what she saw on the ultra sound. Nothing was significantly better, however there were no abscesses or fluid pockets. So it was a good report! Don't get too excited- since then, ive had a solid 5 days of pain, and I'm feeling a lump forming. So, who knows what will be. My next appointment wasn't supposed to be until Feb 16, but I highly doubt I will make it that long. 

I ended up sending the photos to the Dr, and she replied with the kindest email. Here is what it said: 

Ms. Stiles,

OMG! Apologies for the delay in responding. Seeing you is always wonderful, but I wish we could make you all well. I gave a multidisciplinary conference on, guess what, IGM this past Friday, and there was great discussion on treatment strategies. We are working hard to find a better treatment regimen. You are most of the reason --- thank you for hanging in there with us! 

I won’t let you down.

Thank you for sending these photos! They are great teaching photos.

Hope you and your family have a nice Thanksgiving!

She really is wonderful, and I am so thankful for her! 

Anyway, I really don't have much else to say. The issues with my heart havent changed, and my night sweats and other symptoms have continually progressed. Ive been having strange side effects/reactions, and I think it's my body's natural immune response to fighting disease for so long. Realistically, who knows.

I just continue to take things day by day as they come! 

until next time...