Friends, this journey just keeps twisting and turning. Let me give you a quick "last in Erin's medical MESS...":
My oncologist was concerned about the lesions on my liver, so he ordered a particular MRI with a specific contrast (no idea which one). We were also scheduled for my first measurement scan to see how those three precious tumors are doing :) We were told, multiple times, that these MRI scans could not be combined, therefore we were scheduled for one on Thursday, June 6, for the liver, and the second on Friday, June 7, for the tumors/clinical trial. Let's just pick up from there.
The kiddos were all squared away with Heath's mom, Jolene. We took off and headed to Jacksonville for my first MRI, scheduled for 5:30 pm. We arrived early, and Heath dropped me off to get signed in and such. Because the radiology department was fairly empty, I was basically walked right back.
The medical assistant handed me all of the super cool hospital garb, and started looking through my chart. She walked me across the hall and started asking me why I was scheduled for a second MRI the next morning. I asked her if that would be a problem because of the contrasts used. She said no, that they ask for twelve hours between the various contrasts. I told her that I was told to have two separate scans...???? She apologized and said it was fine, and then got my IV all ready to go.
I quickly made it into the MRI suite, where I met one of the best MRI gals I have ever had. In all of my experiences, she was the first to offer me a small towel to cover my eyes so that I wouldn't be able to see the tube of anxiety wrapped around me :) She was beyond brilliant.
The scans were tough this time because of the release of the contrast. The girl (naturally I can't remember her name...maybe Megan?) was very encouraging and patient with me as a struggled through some of the harder "you must hold your breath and not move for a long time" scans. Thankfully, I didn't have a panic attack this time, and because it was later in the evening, I didn't feel the pressure to move quickly and get out of there.
The scans took about an hour, and then we were on our way...to TEXAS ROADHOUSE! Yes!
The next MRI was scheduled for 7:30 am on Friday, so we arrived a little before 7. I was admitted fairly quickly and got all of my cool clothes again. I was called back to the nurses' area to get ready for my IV. I asked him if I could run to the bathroom first. When I got back, he had vanished. I sat in the chair and waited for what felt like forever, when finally he returned with another staff member. She introduced herself to me, and asked me why I was back this morning after I had had a scan the night before. I explained the situation to her, and she just didn't seem to understand. She said she would go speak to the radiologist and verify what was happening. I told her that I was simply told that I needed two separate scans because of the differing contrasts. Off she trotted...
When she came back, she told me that the radiologist could see everything that she needed to see in the previous scan, and that this one was completely unnecessary. On one hand, I was elated! No need for a second trip in the tiny claustrophobia-inducing tube, and also, some MAJOR money savings. On the other hand, I was worried that I would have a repeat of what happened in Tallahassee when my surgeon ordered a biopsy to be done, and the radiologist canceled it for good reason. I asked this girl to verify with my oncologist that I didn't need the second scan. They tried to reach him, but we never got an exact answer.
So...we canceled! Then we had nearly three hours to kill while we waited for my appointment with the oncologist.
Now comes the fun part. And by fun, I mean COMPLETELY CRAZY.
My appointment with my oncologist was scheduled for 9:45. We were called back to the room in a timely manner, and then proceeded to wait for about 45 minutes. My doctor breezed in, sat down abruptly, and we jumped right in. I stopped him to let him know that I didn't have the MRI done for the liver. He paused and asked why not. I told him that the radiologist said only one was needed for both orders. His response was, "Well, of course. You only needed one scan. Why would you have two done?"
I totally responded (silently, of course) in the same way that a child responds to a complete injustice in his or her world. My eyes bugged out of my head, my jaw dropped, and I turned to face Heath with a look on my face that could only express the thought, "Are you KIDDING ME?!?!?!" I was slightly annoyed. Not only had my doctor told me verbally and in written communication at least THREE TIMES that I could not combine these scans for any reason, but now he was telling me that of course, why WOULD you have two separate scans...I just sat there staring at him. He logged into his computer, and then said, as he scooped up his stack of books and papers, "Oh, I'm supposed to be somewhere else right now..." And with that, he stood up and walked out. So many emojis to insert right here.
So, we sat and waited for about 30 minutes for him to return. We were slightly confused by his abrupt exit, but oh well. He returned in the same abrupt manner he had left. He sat back down, caught his breath, and then told us that he was sorry, and that he had been away at a conference, his clinic was now full, he was overseeing the chemo room that day, and that he was the "doc on call." I would be overwhelmed too, pal. We had just started to talk again about my scans when his pager started going off. He apologized and interrupted our appointment again to answer the page. Apparently, he was needed down in the chemo room. Honestly, if I had been the patient receiving chemo and was having a problem, and my doctor was in the same building as me, I would have wanted him too. So, he took off again, and returned about 15-20 minutes later.
He sat down, took a few deep breaths, and we continued, or basically started over. I shared with him about the tumor pain, and also shared with him concerns regarding my adrenal system. He immediately shot those down, and told me if were experiencing adrenal failure, I would be sitting in the hospital, not talking to him in his clinic. I shared with him that I had been referred to an endocrinologist and that I was awaiting more lab results from him. He still seemed uninterested.
He pulled up the radiology report, and informed me that the lesions on my liver WERE, IN FACT, BENIGN, and consistent with FNH (Focal Nodular Hyperplasia), and that we would continue to monitor them in the following MRIs. He followed that wonderful news with the update that one of my three tumors has grown. The other two are "stable," but the largest of the three has progressed some. He asked me, "Why did you guys choose to inject the smaller tumor and not this larger one?" I kind of mumbled something like, "um, excuse me?! I didn't decide anything here..." but we didn't really go down that conversation path. His comment/question made me very concerned though...didn't he communicate with the other doctor on the trial about these decisions? Why would he even say that?! It was all very strange...
He then asked if he could do a physical exam. I got onto the table/bed, ready for him to induce pain on my tumors. He washed his hands, and proceeded to palpate my lower abdomen, nowhere NEAR the tumors on my rib line. Then he washed his hands again, and sat back down. This time I did speak up and ask if he was actually going to touch the tumors. It was all just so strange and out of character.
And with that, he said we would follow-up in six months. As he walked out, he turned back and said, "And please send me a copy of those labs from the endocrinologist..."
.............
That was our super strange experience at Mayo in June. Good news, mixed in with some not so encouraging news, and an incredibly disjointed clinic experience.
I'm sorry this is so long, but the story isn't over yet.
Fast forward to June 18th, the day before we traveled to Illinois. I had a follow-up appointment with my new endocrinologist. (We had met with him on May 30th, the day my primary doctor "broke up" with me. At that first appointment, he had scoffed at our suggestion that my body was in adrenal failure, and was just kind of grumpy the whole time. He ordered several labs to be completed.)
When I met with him in June, I think I softened his rough edges by beginning the appointment trying to describe my health situation in Spanish :) We chatted briefly about where, when, how, and why I learned Spanish, and he almost immediately shifted his demeanor. He then turned to his computer, reviewed the lab results, looked at me and said, "Well, you are definitely in adrenal failure."
Duh, kind sir. :)
My labs showed that I have zero cortisol in my body, which implies adrenal failure. However, my labs also indicated that I have zero ACTH (Adrenocorticotropic hormone), the hormone that is created and released in the pituitary gland. My endocrinologist is concerned that I may have secondary adrenal failure (which suggests either damage or interruption at the pituitary level) or possibly even tertiary adrenal failure (which suggests damage or interruption at the hypothalamus level). In order to determine these things, he ordered an MRI of my brain. CUE THE PANIC ATTACK.
I won't lie. I deliberated on that for almost a month. I finally called the imaging center on Monday, July 15th, after my sweet friend, Jenny, recommended that I listen to a podcast from Rachel Hollis (she spoke heavily about tractional movement forward, small steps, and celebrating every small success). That day, my small success was actually dealing with the fear and finally scheduling the scan. Well, that turned into a hot mess with insurance/referrals/vague orders. My appointment for August 1st was canceled and then denied several times, but is now approved and officially happening TODAY, September 11th, in Orlando.
So this is where we are now. And I hate even sharing these details because there are FAR WORSE THINGS happening to other friends and family members, even, and this seems trivial most days. But then there are the sobering days at doctors offices when I come unglued and feel so defeated and overwhelmed by the current state of affairs. I am incredibly nervous about the MRI tomorrow. BUT, I know we have to move forward with this to get more answers.
Will you pray for my nerves during the scan? Will you pray that the answers will be abundantly clear, one direction or another? Will you also pray that my oncologist at Mayo will be able to listen and communicate more clearly during our next visit, which will now be happening much sooner than December? Will you pray specifically that he will acknowledge the side effects I am experiencing and help us move forward toward a solution?
Thank you for being our tribe. Thanks for standing in the gap with us, especially on the days that I don't feel like I can keep standing anymore.
"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen." ~ 1 Peter 5:10-11
