Hi friends. Thanks, again, for being "here" with us. As lonely as this feels sometimes, I know that's just Satan trying to drag me down. I (we) have an ARMY of prayer warriors, encouragers, and helpers. God is still here...he hasn't left us hanging to dry :)
Let's just dive right in.
Friday, September 27, 2019 - I had an appointment scheduled with my primary doctor. 16 days is a long time to wait to hear results regarding a potential tumor in your brain. I had requested that my radiology reports be sent to him as well as the ordering endocrinologist. So, he sat down with me and confirmed what I already suspected. The MRI showed a very small mass on my pituitary gland. My PCP read the report out loud to me, and then gave me a copy. It provided the measurements of the mass, but obviously they meant nothing to me. I know that the pituitary gland is about the size of a pea, but that's it. I also know that my PCP isn't an endocrinologist, and that this was beyond his scope.
Monday, September 30, 2019 - Appointment with my endocrinologist. Now, if you recall, my PCP referred me to this guy with the disclaimer that he basically has a terrible bedside manner, which, honestly, I learned pretty quickly. Yes, he was impressed with my Spanish skills during a later appointment, but other than that, we have not really gelled. I went to this appointment alone, mostly because the blow of the tumor was already given to me. Nothing new here. The appointment was not my best. He was somewhat aloof about the whole complicated mess. He first looked over lab results, which have not changed. He then took my blood pressure. I wish I had taken a video of that whole episode. The velcro on the cuff wasn't sticking. I even suggested a larger cuff, in case he was trying to be kind. Instead, he sat there trying to hold the cuff shut while simultaneously pumping and holding his stethoscope with his other hand, and also trying to watch the dial on the wall. Seriously, it was ridiculous. He then announced my BP as something completely abnormal for me, like super high. I tried to suggest that it was inaccurate, and he shot me down. Then, we discussed the steroids I have been taking to counteract the lack of cortisol in my body. He was not happy that my other doctor, who I see basically every two weeks, had told me to take a different dose. He was clearly agitated by this information, almost miffed. At this point, I felt completely confused and also defeated. Two incredibly intelligent individuals, one whom I trust much more than the other, with completely differing viewpoints. [Insert agonizing emoji here.] He finally acknowledged the radiology results. He wasn't bothered by the tumor whatsoever. He said, "Let's run a full pituitary panel, and I'll see you back in two months." UGHHHHHHH. Two more months of feeling this way? I blurted out to him that I have daily symptoms, including a massive amount of hair loss. He immediately told me that my hair loss is completely unrelated to my thyroid and adrenal issues. I think my jaw dropped at this point. He stepped outside the room to figure out why he couldn't find a number on the digital chart, and I just sat there, dumbfounded. He returned with a nurse, who fixed the computer, and then he put his arm on my shoulder and said, "Don't worry. I can fix your hair later, but it has nothing to do with these other things. We will talk soon."
AND THAT WAS IT.
So, I drove home from that appointment in tears. Why does this have to be so complicated?!?! Later that afternoon, I had a long chat with my beloved and incredible counselor. We talked about being assertive, something I CLEARLY struggle with. We talked about the next steps here...that I needed to do what I had been saying I would do, and that was to contact my doctors at Mayo. It was beyond time for a second opinion. It was definitely helpful that at this point, I had had enough.
Tuesday, October 1, 2019 - I sent a very pointed message to my oncologist around 9:15 am. By pointed, I simply mean that I told him I needed to see him sooner than December, especially with how our last encounter had been in June. I asked him to let me know how to accomplish that. At 2:15 pm, I received a call from HIM! Not his nurse, but him. As I have mentioned before, this man is completely brilliant, but also a bit awkward to talk to on the phone. He immediately asked how I was doing, and wanted to know what was wrong. He said he couldn't recall our last appointment, or what went wrong during it, so I gently reminded him of the chaos of that day. He finally remembered being on call, and apologized entirely. He said that he asks the schedulers not to fill his clinic on those days, but that he still gets patients. I was very grateful for his reaction, thanked him, and told him that I still needed him on my team. I updated him on the adrenal system mess, to which he still responded with shock. I also told him about the pituitary tumor. He responded more empathetically to that one. I told him that I am a mess, and that I have to fight for myself here, because no one else can own my medical mess besides me. I told him that I had been planning to beg him to refer me to an endocrinologist at Mayo, because with all of these complications, I needed to be with a team of doctors who HAVE to communicate with one another. He responded by telling me that I didn't have to beg, and that he would absolutely help me with that. I could hear him typing in the background, and he submitted a referral right then and there. I thanked him for his help, and he said I should be hearing back soon.
Wednesday, October 2, 2019 - Mayo called before noon. They are so efficient :) The girl was really nice, and helped me navigate the scheduling world. The first option she gave me was while we were scheduled to be at the beach with my parents...opposite coasts of Florida. The second option wasn't until November 8th, but I figured what's a few more weeks?! I took the November appointment, and started making calls to obtain records and copies of scans. Around 5 pm, my scheduling friend called me back to let me know she decided to check the schedule one more time, and happened to find a cancellation on October 22nd...17 days prior to the other appointment! YAY! Less wait time :)
I have been rounding up current records from both doctors here, as well as the imaging center I used for the MRI. I have one more phone call to make tomorrow, and then hopefully everything will be there at Mayo waiting for me on Tuesday. I have created a medical resume for this new doctor to be able to take a glance at one sheet to get an overall summary, or at least the high points. I will also be typing out my questions because I don't do well on the spot with anything.
STOP. I almost forgot one of the craziest parts of this whole thing. One night last week, after my appointment was scheduled and confirmed, I couldn't sleep. I opened my Mayo Portal app to just check to see that the appointment was, in fact, still there (P.S. I know that I am crazy). I noticed that there was a doctor's name listed with my consultation. I decided, like any sane person would, to Google him :) His last name is very unique. The first listing was from the Florida State University College of Medicine. Oh, how nice! Small world. We lived in Tallahassee. Oh, wait. Under his profile...
Hometown: Saint Cloud, Florida (our current home)
High school: Harmony High School (the school where Heath now coaches)
WOW!!!! That's insane, I thought. Then, I figured we might even have mutual friends on Facebook. Switched apps. Typed in his long name. Sure enough, we have three mutual friends...including my future sister-in-law! Say what?!? So crazy!! My future SIL went to school with him and knew him.
Like I said at the beginning, God is still very much here, working in the midst of this chaos. I just have to keep trusting Him. Good golly, that is so hard. I'm trying. Every.single.day. Sometimes hour by hour.
Will you pray for this appointment on Tuesday? I need help. Many things have gone awry in my body. I am doing the best I can to research, listen, study, take a multitude of medications each day that at this point, don't seem to be helping much, and to rest...on top of trying to take care of our kids, do my job, and basically carry on like none of the rest of this is happening. I'm incredibly worn out, discouraged, and in desperate need of doctors who can help me. I am praying that this sweet boy from Saint Cloud will be a breath of fresh air and that he will be able to come up with a plan for us.
Thank you for reading. Thank you for praying. Thank you for encouraging and blessing our family. I know things could be monumentally worse, and I try to practice gratitude every day. But some days threaten to swallow me whole. Thanks for shouldering the burden with us.
**I forgot something else. My endocrinologist called me. Not his nurse, but actually him, on Tuesday, October 15, 2019. He had received the pituitary panel of lab work. More things are problematic. I have abnormally low levels of one hormone that I struggled to understand the name of on the phone, and then abnormally high levels of LH and FSH. He asked me several questions about things that I have already tried to tell him in previous appointments. He said we would meet again in two months. And then he noticed my chart said something about sending records to Mayo. He immediately got cranky, asking why I was doing that. I told him I wanted to run these things by my oncologist, and that I needed a team of doctors who were willing to speak to one another. He simply said, "okay, fine." And that was the end of that...and at that, I was even more grateful for our already-scheduled consultation at Mayo :)
