Reality Check Part I
Good Morning. Sorry, I have been under the radar the past few days. I haven’t been doing quite as awesome as I was so I wasn’t able to blog. I think you’re all familiar with how well my recovery has been going- it’s been amazing. It’s been a great recovery all things considered and I feel so fortunate to be able to enjoy the wonderful, simple-ness of the beauty of everyday life.
Monday was the first day I was off my Moon-Pie pill, aka, my life saving steroids which I was given to reduce the swelling in my brain. I was very happy to stop taking them. Without the steroids I was hoping I could start to feel and look more myself. What I didn’t realize is that as I came off them, it might cause other issues. I have been dealing with some fun stuff the last few days… I have been having some nasty headaches of the dull achy kind. If I bend down at all to grab something or tie my shoes my head immediately hurts from the pressure. I assume this is normal since I had a BAT (Big Ass Tumor) removed.
For anyone I’ve actually “talked” to, you know that my voice has been challenging to hear. My vocal folds were affected during surgery so I still have a raspy voice and it’s hard to drink any fluids. If I ty to take an actual “tip your head back and swallow” kinda drink it makes me cough. Coughing makes my head feel like it might just explode. Vicious cycle right?
Well, add to that waking up Tuesday morning with a super headache, and feeling my dented melon (really, it’s dented, no joke), and my skull feeling squishy. Where part of my cranium was removed and put back together with screws, it felt like a water balloon. You should not be able to push on your noggin and have it give in and then bounce back! This was pretty scary for me, especially when you add on a headache and extreme tiredness, and no real clear path for what my recovery is supposed to look like since everyone is different.
I made several phone calls to Kaiser starting at 7am and basically finally heard back from the right people by 11am and I was told that since I don’t have fever or blurred vision that I can just hang out until my appointment with my nuero on Friday…not reassuring. Maybe I should have pushed more to be seen by the Dr., but at that point I was tired and decided to crawl in to bed and sleep for the day. It’s so hard to know what “normal” is supposed to look like when you’ve had a major surgery.
Long story short about the road to recovery, I have been doing a lot of resting this week and sleeping if I can. Although I love blogging as a way to process and keep everyone informed, I just haven’t been able to do it until today. I felt like I took two steps forward and three steps back with my healing. It’s getting better though. Wednesday I went to the ENT in Roseville and he threaded a scope down my nose and into my throat (super fun! :p) and it turns out that the left side of my vocal folds aren’t closing which is part of why I still have no real voice.
I went in for another ENT appointment today with a different Doctor and she scoped me again and then gave me a couple shots in the throat before injecting my left vocal fold with collagen filler which will hopefully allow the folds to close like they are supposed to when you talk. Immediately my voice was a little louder which was awesome. The Dr. said that it could take up to a year to actually get my voice back, if I get it back at all. The injection will last a few months. If after a year, and no real voice, then we would have to consider an implant. Let’s hope that my voice comes back on its own. Another of the complications if the folds aren’t closing properly could be the possibility of getting fluid in your lungs which of course could lead to other lovely issues like pneumonia. Thus, I went for the shot in the throat today. Better than a throat punch I guess. LOL
In case you wanted to know what my vocal cords (folds) actually look like...rather alien...lol
Today was also another CT scan and then on Friday, Rob and I head to Vacaville for the nuero appointment at noon. We have our list of questions for the Dr. and I very much look forward to hearing the results of the pathology reports, CAT scan, and to outline my road to recovery. I will do a Part II to this blog after we talk to the Doc so ya’ll know exactly where he thinks we are at with all this fun stuff. And side note, at the Doctor today they did the obligatory, “Please step on the scale…” WTHeck! Steroids are lifesaving, but I have gained 15 plus pounds in the last 30 days! UGH… I still don’t recognize myself! We will see what the Dr. has to say about all that nonsense too!
I know that I have somewhat diverged from my more positive posts, but I wanted to be honest and real about everything I’m going through. It’s been a whole lot of reality and raw emotions this week, but at the end of the day, again we are so thankful for our family and loyal friends who have supported us through the last month. (It’s been a month today if you can believe that!) We are thankful and although we have faced hardships, we are still here enjoying each new bend in the road, and awaiting our next big adventure- whatever that turns out to be.
Thanks again for reading and Part II will be out soon!
-Mel