Hope

I met with my neurosurgeon yesterday along with my husband, Dayv. He showed us the new images from my last MRI as well as the old ones. Dayv has never seen them before. He said the dosage of steroids I was given should have at least shrunk the mass significantly if not completely like he has seen before in other patients. Mine showed no change at all. He said we could still sit and wait however, I could be sitting on something that could be very serious. He also said I’m not risking much by doing the biopsy. If it keeps growing, I will lose more hormones anyway. And there is that chance I won’t lose any hormones by doing the biopsy.

Dayv and I have discussed this whole thing quite a bit. Before my appointment we had pretty much already came to the decision to go ahead with the biopsy but I still had some apprehensions. I asked my doctor if they would know for absolute sure what the mass was by doing the biopsy. He said they may have to send it out which may take some time but YES, they will find out for sure. After hearing all he had to say, I felt at peace with the decision to go ahead with the biopsy. Although I am still nervous about the actual procedure, I am actually feeling excited to FINALLY find out what we are dealing with and moving forward with a plan of action!

My biopsy will be Dec 10th. On Dec 9th I will go in for a CT scan which will serve as a gps so they know exactly where to go. On Dec 10th I will be admitted and they will go on through my nose, through my pituitary to the pituitary stalk and take a piece of the mass. Cerebral fluid will leak from the incision. They will then take some fat from my stomach to patch the hole (I wish they would take some extra!). I will spend two to three days in the hospital. During my stay they will do a full work up to check my hormones and see which ones, if any, were affected before I leave the hospital. I will not be allowed to lift anything and my recovery will be 1-2 weeks. I asked about going back to work the week before Christmas break and he said he would wait to go back to work after the break. So I guess my Christmas break will start a little early.

Is this finally the light at the end of the tunnel? I am very hopeful!

Side note: my face is looking so much better! I still have a little redness but my preschoolers have stopped asking about it so it must not be very noticeable!

Results

I tried really hard not to get my hopes up that I would finally have an end to my crazy health journey; that I would finally know what I was dealing with and have an actual treatment plan. Unfortunately, the hopes were up and came crashing down. The journey is not over. The results of my MRI came to me this morning. I quickly scanned the report and read, "no change in the masslike enhancement along the pituitary infundibulum (stalk)". Yep, NO CHANGE. The steroids did not work. But wait, it gets even better, "there is a small enhancement along the right lateral wall of the third ventricle that COULD represent a small additional lesion". Really?? Trying not to get hung up on that one too....

So, I guess biopsy is next. Fortunately, the doctor scheduled the biopsy date when I started the steroids just in case we needed it. It will be on Dec 10th. Last time we talked he said I would be in the hospital for 2 days. I was hoping I wouldn't need to know so I never asked him about the recovery time after I got out. He told me I would most likely lose all function of my pituitary but there is still a small chance I won't. That, of course, is what I'm praying for. I will be meeting with my doctor on November 25th (unless there is a cancellation that comes up earlier) to discuss everything before the date of my biopsy.

I've been praying that I would be able to accept whatever outcome came from MRI. I honestly don't think it's totally set in. I can tell I'm trying not to think too hard about it. There are too many what-ifs. I know there is a reason I'm still going through this. I've been told that a few times. There have already been some pretty amazing things that have happened to me because of what I'm going through. I'm tired but I think it could always be worse.  

It's going to be a long 33 days but I'll be ok.   

  

What is this??

On October 14th, I noticed something on my chin. It almost felt like I was breaking out but different. I ignored it for some time until it started oozing. I turned to friends, family and google and came up with impetigo. It’s not common for adults to get but I do work with preschoolers and was told the steroid I have been taking would weaken my immune system. Fall break had started (Oct 17) and I was able to get into the doctor right away. He agreed on the diagnosis of impetigo and sent me on my way with an antibiotic.

Two days later, there were several more oozing sores and the pain was almost unbearable, especially at night. I could not sleep at all and it was affecting my mouth and throat making it hard to eat. Everything I had read or heard about impetigo was not what I was experiencing. I decided to go into InstaCare and find out if that’s really what it was. The doctor looked me over and said yep, it’s impetigo and sometimes it acts like that. She said maybe the steroid was not allowing the antibiotic to work as well and to give it more time.

That night was horrible. The whole right bottom side of my face, mouth and throat felt like it was on fire. When I looked in the mirror the next morning, I had even more sores and they had spread up my face onto my ear. I really didn’t want to have another doctor tell me it was impetigo but I knew something wasn’t right. So, Dayv took me to another InstaCare that was open on Sundays. I told the doctor all that had happened and showed him the pictures I had taken of how it progressed. He got a closer look and said, this isn’t impetigo, it’s shingles! Oh my gosh, that makes SO MUCH more sense!! He decided to have me keep taking the antibiotic since I had started it and added an antiviral “horse pill” med that I took 3x a day. He also gave me an opioid for pain. Which, I might add, did not even touch the pain.

The sores finally stopped spreading and two days later, it looked like things were finally starting to heal. The very first sore developed a dark black scab over it. I had taken two days off of work and when I returned, my preschoolers had lots of questions about the condition of my face. It still looked pretty gross but there was nothing I could do to cover it. Your face really is the worse part of your body to have stuff going on like that. I had one coworker think The scab was food on my face when eating lunch 🤦🏽‍♀️.

We are almost 3 weeks out now. The black scab finally came off today and left a nice deep impression. There is just a little bit of redness. I’ll occasionally get shocks of pain especially up to my ear. I also am still having problems with my equilibrium, which I’m guessing is because the sores had developed on my ear. But, overall I’m feeling so much better!

In other news, I’ve got 3 MORE DAYS until my MRI where we check to see if the steroids have done anything to shrink the growth on my pituitary stalk. It is scheduled for Tuesday, November 5th! Here’s hoping and praying 🙏

And THANK YOU, THANK YOU for all your love, prayers and service! While completely miserable with the shingles, I had a dear friend text and offer dinner that night and another dear friend brought over dinner and the best care package I have ever received. I am so, so blessed to literally be surrounded by angels. I have also had so many people tell me how much they have been thinking about me and praying for me. There are not words to express how incredibly grateful I am for all of you.