You know, I have to take advantage of the humor when I can :)
Friends, it has been a LONG six weeks, with six different doctors appointments, since I last updated.
But, I can't wait to explain (in detail, of course) how faithful God continues to be at every single twist and turn.
Let's pick up where I left off.
Monday, October 21, 2019 - My sweet friend, Lindsay, volunteered to go with me to the endocrinology appointment at Mayo. You know you have a great friend when she asks to hear more details about the whole situation so that she can keep up with the conversations with the doctors. We spent our drive to Jacksonville chatting about lots of things.
Late that night, I couldn't sleep, so I started preparing myself mentally for the morning appointment. I had typed up a medical resume of sorts, just hitting the highlights of my medical and surgical journey. I had also created this very basic Excel chart that tracks the changes in all of my labs over time. I also printed out my entire blog, just in case they REALLY wanted all of the juicy details.
I was exploring the Internet and trying to read as much as I could about Addison's Disease, the disorder where one's body doesn't produce enough cortisol, as well as Cushing's Syndrome, the opposite disorder where one's body has an excess amount of cortisol. I found this really fascinating drawing that showed one body that was divided down the center, the left side reflecting a Cushing's patient, and the right side reflecting an Addison's patient. What I found most interesting was that my bloodwork tells me I have Addison's Disease, my body physically presents itself as a Cushing's patient. I was really confused, and wondered how could I possibly have both things at one time...
I finally fell asleep around 3:30 a.m., giving me less than four hours of sleep before our 8 a.m. appointment.
Tuesday, October 22, 2019 - For those of you who prayed for this appointment to be a breath of fresh air...GOD DELIVERED. The young "boy" from Saint Cloud came in, sat down, and asked me to start talking. He was super calm, very kind, and seemed so genuine right off the bat. He had a pile of papers in front of him, with all of the labs I had sent to them, but also older information from doctors in Illinois. I presented him with the documents I had created, and instead of telling me that he wouldn't look at them, he was grateful and started reading through them with me. He actively took notes about the things I shared with him and asked thoughtful questions. He even asked if he got to keep the THIRTY PAGES of my blog that I printed out for him :) We talked quite a bit about the clinical trial, and we discussed the details of that. At one point, he commented about the fact that my address is in Saint Cloud, and that he, too, was from Saint Cloud, to which I responded, "Yes, yes I know. I did some googling." We talked about how it was such a small world :)
He did a physical exam, which is more than I can say about my previous endocrinologist, and then said he would need to step out and look over everything for a bit.
Lindsay and I sat in the room for no more than twenty minutes, chatting and comparing notes, when he returned with the attending endocrinologist.
She was very kind...not quite as warm as he was, but still, very thorough and professional. The first thing they shared with us was the conversion of the doses of steroids I received for the clinical trial. You see, at this point, I was taking 25 mg of hydrocortisone tablets daily. I had bumped that up to 30 mg and even 35 mg a day, but was told that was too high. When they converted the dose of Kenalog steroids I was given for each injection, they guessed it to be the equivalent of approximately 600 mg of hydrocortisone. That's a LOT of steroids in one dose. No wonder my body has gone haywire! They basically attributed all of my adrenal insufficiency problems to the clinical trial...the pituitary tumor, the adrenal failure, and the other hormonal imbalances I had been experiencing.
They explained that when these steroid injections are administered in joints and extremities, the drug stays fairly localized. However, in my abdomen, such a high blood flow area, it obviously had saturated more of my system than the trial anticipated.
They were both shocked that my last injection was in March, and yet my body hadn't rebounded yet. She (the attending) said that at the most, it should have lasted maybe 60 days. Here we were, nearly eight months post-injection, and my body just hadn't corrected itself.
They both studied my labs and said they were confident my adrenal system would wake up again. THAT WAS THE HOPEFUL RESPONSE I HAD NEEDED. (My previous endo had basically said I would live on steroids for the rest of my life, no other information given.) These doctors were incredibly positive and encouraging...until she said I would have to follow-up with my doctor at home...
Talk about a buzz kill.
I felt my jaw drop, and was impressed with the speed at which the following words came out of my mouth..."Oh, no no no. I can't go back to him. I just can't."
I then found out that this endocrinology department rarely takes on clinical patients, unless they are super rare or serious. I was so sad. Finally, a doctor who listened and had so much to offer, but I couldn't keep him/them. I asked them for a recommendation in the Orlando area. She immediately provided me with the name of a woman who helps lead a regional endocrinology "thing" at Mayo and has a practice in Orlando, but not an actual referral. I googled her name and address right there in the exam room, with plans of calling as soon as we left the building.
Both doctors left the room at this point, and it was maybe 9:30 or so. We had spent nearly an hour with the resident alone. He returned shortly thereafter, sat down, and had more things to say. He said he wanted to be honest with me. He knew that sometimes doctors don't describe the entire picture, but he wanted to be transparent. He said that the next year or so of my life would be really rough. He then said, "Actually, it's going to suck." He was talking about the whole withdrawal from the steroids I am currently taking. The end goal here was to become completely independent from the hydrocortisone. I appreciated his honesty, and was also a bit scared.
He had also been looking at the list of medications I had provided for him and advised me to stop taking certain supplements. He encouraged me to strip everything down to the bare minimum as far as pills and such. They reduced one of my thyroid medications as well. They had some labs they wanted to repeat and gave me permission to do them at home instead of staying in Jacksonville for another night. I was instructed to stop taking my steroids for the rest of the day.
They also agreed to stay in touch, and that even though I couldn't see them regularly, they would "oversee" my case and check in with me each time I come back to Mayo to see my oncologist. I was very grateful for that offer and agreed to schedule my follow-up for the beginning of December, around the time of my 6-month scan for the Desmoids.
Lindsay and I left the clinic and walked to my car. While we were deciding where to eat, I went ahead and tried to call this endocrinologist in Orlando. I got through to them fairly quickly but found out that I couldn't see this doctor until February. I knew that I needed to follow-up with someone within two weeks. They offered me an appointment with someone else in the practice, but I knew I wanted this other doctor because she was "the best." I decided to hold off and think about this before we actually decided.
Lindsay and I debriefed the appointment together while we drove to our lunch location (Newk's Eatery). One of the questions I remember her asking me was if I had any regrets regarding the trial. Honestly, I didn't. I knew going into this that there would be consequences. I never predicted these specific ones, but, I mean, the doctors didn't even see this one coming, so, how was I supposed to know? Had I chosen chemo or radiation, there would have been immediate consequences. So, no. No regrets for me.
We did some shopping at Target and Michael's, and it was in the sticker aisles of Michael's where I was already feeling the effects of my lack of steroid medications. We loaded up in the rain, and began driving home.
About an hour into our drive, Heath sent me a copy of a text message he had received from some girl he had gone to high school with. I didn't know who she was, but she had randomly seen my blog that morning because I had tagged Heath in my facebook post. She told him that she worked with a team of six endocrinologists in Maitland, and that they knew the leading pituitary endocrinologist in Florida, and they could help me get in to see her.
HELLO, GOD! I see you :)
Heath gave her (his friend) my number and told her to just call me directly. She texted me, and as soon as she mentioned this endocrinology practice she worked at, I immediately remembered that the woman they referred me to was actually in Maitland, not Orlando proper. I asked her if she worked with this woman, and she said yes! When I told her I had tried to get in but couldn't, she said, "Let me see what I can do!"
Ten minutes later, she replied. She couldn't get me into the doctor Mayo had recommended, but she had agreed to consult on my case if I would agree to see someone else in the practice. HOW COOL IS THAT?!?!?!?! She started working with the scheduler, and within the hour, I was scheduled to see this new endo on Halloween. Less than ten days later.
GOD IS SO GOOD!
Wednesday, October 23, 2019 - As I was pulling into Finley's school, I received a call from Mayo. It was my oncologist. Graciously, he allowed me to put him on hold while I moved through the car rider line. He wanted to hear about my appointment with the endocrinologists. He had seen their notes from the appointment and was kind of frustrated at their accusation toward the trial for these problems I'm having. We talked for about ten minutes about the whole situation. He really felt that there was no way for the injections to be causing these problems. I assured him I wasn't blaming anyone, and like I had told Lindsay, I had zero regrets. I told him I still desperately needed him and his expertise on my team. He promised me that he was still on my team as well, and we had our Hallmark moment right there on the phone that morning. He said he wanted to connect with the endo team and talk with them directly about the whole thing.
Thursday, October 24, 2019 - While Finley and I were in the middle of the parent time of her piano class, I got another call from Mayo. This time, it was the attending endocrinologist. She had questions for me. We basically went through my entire medical history in roughly twenty minutes. She was incredibly thorough in her questions and was genuinely a bit baffled at points. She made me feel so good though when she told me that she was so impressed with my historian skills. Swoon. I was so grateful for that appreciation! She was concerned that she hadn't heard any results from the labs I had just completed. She also seemed genuinely interested in my mess, and said she would be willing to see me again.
Friday, October 25, 2019 - After a HORRIBLE morning of school drop-off experiences, in the middle of serious tears while driving, I got a text message from a sweet friend of mine from home. We went through all of our elementary, junior, and senior high school careers together. She sent a simple message: "Check your Gmail account." That was it :) I went home, again, in tears, pulled up my email, and found a collection of letters from several childhood friends, all of which brought me to more tears, but these were tears of JOY and GRATITUDE. Again, God, I see you.
Thursday, October 31, 2019 - HALLOWEEN - I met the new endocrinologist in Orlando. Again, such a refreshing encounter with a doctor who actually listened. She was thorough, thoughtful, and so kind. She was empathetic to the whole situation and very decisive with a plan moving forward. She ordered more lab work, and also ordered an adrenal STIM test. This is the test that my PCP had wanted the first endo to order, way back in MAY! She also ordered an updated ultrasound of my thyroid. She was intrigued as well by the presentation of both Addison's and Cushing's. She described it as artificial Cushing's, and was also surprised that it had taken nearly six months for these very definitive symptoms to show up (hair loss, purple streaks on my abdomen/arms/legs, dry skin, rashes on my face, SO MUCH FUN). She was very efficient and spent about 45 minutes talking to me that day. Again, I was just so grateful for the whole chain of events that had led me to her. I left feeling confident and calm, knowing that we had a plan.
Wednesday, November 6, 2019 - My MIL, Jolene, drove me to Maitland for the STIM test and ultrasound. I had to fast from my steroids again for this test because she wanted to get the clearest picture possible of what was going on in my body. The ultrasound was super simple and quick, and then we went straight to the exam room for the STIM test. While we were waiting, I texted Heath's former classmate and asked if she happened to be working that day. SHE WAS! YAY!!! I got to meet her and hug her and attempt to express my gratitude for her help. Jolene knew who she was, so they enjoyed a nice catch-up as well! She explained how she had been mindlessly scrolling facebook that Monday night in October when I posted my update. She said she got up on Tuesday and had to go back and read the details, and that's when she reached out to Heath. HELLO, GOD! I still see you!
Jolene and our friend chatted while the other nurse began this STIM test. The whole point of this test was to test the function of my adrenal glands by injecting my body with ACTH hormone and then checking my blood at timed increments to see if/how the adrenals respond. I was warned that I may get sick during the test, but thankfully that didn't happen. The nurse was so sweet though...she knew I didn't want to look at the IV just hanging in my arm, so she gently covered it up for me.
All in all, no big deal. Plus, we ended our time with the Cheesecake Factory :)
Friday, November 8, 2019 - Appointment with my PCP/holistic doctor - I had an entire page of things to share with my primary doctor. We talked about how I fired his friend. I updated him on the whole endo journey to Mayo and back to Orlando. He had an epiphany in this appointment. He shared with me some details of a trial that was done with testosterone pellets and patients with testosterone problems. I will spare you the comparison and skip straight to his theory about my body and cortisol. He said that sometimes when you receive injections like the ones I received, they create a depot of sorts in your body, and continue to leech out the substance for a long time...that perhaps, the massive steroid injections were still just loitering around in my body, and therefore in my tissues, but not necessarily in my bloodstream. He was so excited while he shared these ideas! He said that a messed up body like mine is like brain candy for a brain like his. I was just overjoyed for him in that moment (insert sarcastic tones here). He ordered a saliva test to be done to measure my cortisol levels. He was confident that the tests would show that my body is still full of steroids and that that is the cause of my Cushinoid symptoms. He ordered more labs as well. I think I deserve a fast pass to Quest at this point.
Monday, November 18, 2019 - Follow-up appointment with the endocrinologist in Orlando. My new doctor is truly very great. She is smart, calm, thorough, and doesn't create more stress for me. That's a winning trait for me at this point! We discussed the ultrasound first. I have nodules on my thyroid, which isn't a shock, and my thyroid is consistent with Hashimoto's, which is a good thing. She wants to move forward on that front with a thyroid biopsy, but not until we request more records from Tallahassee where I have already had some biopsies done.
We then discussed the STIM test results. They were not what she had been hoping for. My baseline cortisol levels were still at 1.0. After the timelapse, my levels increased to 4.7. She had wanted to see somewhere between 18-20. She decided to see what would happen if we cut back on my daily hydrocortisone doses. I was instructed to reduce my dose from 25 mg to 20 mg, and to adjust the times I took the pills. She warned me that there would be side effects to this change...
We then discussed my amazing weight, the frustration I'm experiencing from the blasted scale refusing to budge, and the depression that follows all of that. She offered to schedule me an appointment with the dietician in their practice. We also talked about some diabetic medications. While I don't have diabetes, I'm learning every day how incredibly intricate our body systems are. Not that I doubted, but my goodness, it's so crazy. Anyway, I had no idea that blood sugar and insulin and all of that were directly related to your adrenal system. I guess I blocked that part of human anatomy and physiology from my brain. This whole adrenal shut down is literally wreaking havoc on multiple systems right now.
Thanksgiving Week - A WEEK WITHOUT DOCTORS!!!!!!
Monday, December 2, 2019 - It has been a rough two weeks since I cut back the steroids dose. I have a newfound respect for people who are able to become sober from harder, more addictive substances because if what I've been experiencing these last two weeks is even a FRACTION of what they are dealing with, I can't even begin to imagine. I have had excruciating headaches every day, dizziness, nausea, this horrible sensation that my body is either in a moving vehicle or a fast roller coaster that just won't stop, exhaustion, sweating...it's been TERRIBLE. My body has become completely reliant upon these steroids since June. I guess this is what the guy at Mayo was warning me about?
Anyway, I am typing this from the bathroom of our hotel room in Jacksonville. We got here really late tonight after a few changes to our plans. Jolene came with me this time, and tomorrow morning, December 3, 2019, I will have my second measurement scan for my Desmoid tumors. I will see the orthopedic surgeon (who is the principal investigator of the trial) about an hour after my scan. Much like before, I haven't really allowed myself to stop and think about the possible outcomes from tomorrow's scans until NOW. Actually, my oncologist called me around 6 pm tonight (Monday) to check-in and see how I was doing. I won't see him tomorrow, but we talked about how I've been feeling, and what's next for me. I thought that was incredibly kind and thoughtful of him to do.
If you've made it this far, will you pray for the scan tomorrow? Will you pray that I will be calm in the MRI, and that these blasted tumors will have shrunk, or at least not grown?
I have an odd sense of peace right now. Perhaps it is delirium, as it is nearly 4 a.m., but I know better. God has held my hand throughout this entire saga, and He will show up tomorrow morning and hold my hand again.
Thank you for sharing this burden with us. God is good, and he is faithful to provide everything we need...and for me, that is all of you.
Tuesday, December 03, 2019
Monday, October 21, 2019
Tumors and Trials
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 :)
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 :)
Wednesday, September 11, 2019
Trusting God When It Just Doesn't Make Sense
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
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
Monday, June 03, 2019
Turn Your Eyes Upon Jesus
I apologize for not updating sooner. To be honest, I just needed a mental break from processing everything I'm trying to process. I've come to the conclusion that yes, this blog is helpful for communicating most of the intricate details of this health mess I have found myself in, and it is helpful to communicate to friends who I don't get to see in person too often, but it is also a place for me to process, ponder, and basically struggle through my thoughts and feelings of this whole deal. After my last day at Mayo, I was just kind of emotional and a little bit "over it."
Let's rewind and refresh again. After seeing my oncologist on March 1, he wanted me to have genetic testing done and to have a liver biopsy of the "lesions" that are on/in my liver. Our appointments were scheduled for March 18.
We arrived at Mayo and went to our first appointment of the day with a genetic counselor. Her name was Jessica, and she appeared to have just graduated from college. No judgment, except that I felt old. She walked us through the process of checking for a mutation on this specific gene. She made a quick family tree where we discussed my children, my brother, my parents, aunts and uncles, and my grandparents. We discussed health issues that run in the family, when my grandparents died and from what. Based on that simple document, she said she didn't see any red flags that suggested I was a highly likely candidate for this colon cancer gene. Of the 3-4 people per million who have Desmoid tumors, 5-15% of them have the genetic condition. So, the probability that I DO NOT have this gene mutation is fairly high. If I were to test positive for the APC gene mutation, there will be ramifications for my children, obviously, and possibly for my parents, although, at this juncture, it is highly unlikely that they have it...if I test positive, I will most likely be the first person in our genetic line-up to have a spontaneous mutation. Cool, huh?! Why can't I insert eye-rolling emojis on this platform?
Anyway, after we met with Dr. Jessica, we went to another part of the hospital to await the liver biopsy. We were super early (shocking, I know), and we had quite a bit of a wait. They finally called me back, and I was admitted into a little holding area of sorts. They prepped me (gave me a rad gown), and called Heath to come back to this holding tank with me. They were running really behind, so much so that both of us fell asleep for what felt like an hour! The nurse finally called my name, and they wheeled me back to a procedure room that I had already been in twice during this journey...so that was nice, or as nice as a familiar procedure room can be.
The sonographer began searching for these lesions. She was comparing her screen to my scans, I believe, and she just kept working that wand. Pretty soon, the tiny room was bustling with people...two radiologists, some lab tech guy (can't remember his title...but he was there to await the biopsy sample to inform them if it was large enough), another nurse, and another sonographer gal. The first radiologist, who was in my line of vision, and also trying to comfort me as best as possible, stood there watching the screen with a befuddled look on his face.
**Keep in mind that I was rolled up on my left side, literally gripping the mattress. I tried to tell them that I had wanted Valium for this part...not because of the pain, but because of the anxiety. And the anxiety I definitely had. I basically sat there crying silently during this whole thing, and the only thing that was keeping me somewhat distracted from completely sobbing was the song, "Holy Spirit" by Jesus Culture. The lyrics to the chorus just kept repeating in my mind:
Holy Spirit you are welcome here,
Come flood this place and fill the atmosphere
Your Glory God is what our hearts long for
To be overcome by your presence Lord
The sonographer (also can't remember her name...maybe Kathy???) kept pushing and probing with her wand. They kept asking me to take deep breaths and to try not to move. Apparently, this was why they couldn't give me Valium. They needed me to participate. (Insert more eye-rolling emojis here...I'm sure they were wishing I had had Valium too...)
After about an hour, the other radiologist, who had been behind me, watching both screens, came over to stand in front of me. He squatted down and basically told me they were going to stop at this point. He said that it was just too risky and violated the whole "do no harm" concept. He said that when they received the scans and the orders for the biopsy, they told my doctor that they would do their best, but that basically, the lesions are in a difficult location to biopsy, and based on their observations during the ultrasound, the lesions did not appear to be as large as they did on the MRI scans. They were worried about the risk of hitting my lungs or ribs to obtain a potentially healthy sample of liver tissue.
So...that was that.
The nurse then wheeled me back to the holding area, and we packed up and left, and then waited to hear from someone.
About 10 days later, on March 29th, I received a very simple message through my Mayo Portal:
"No identifiable pathogenic mutation was found in the APC gene. Therefore, there is no evidence you have familial adenomatous polyposis (FAP) syndrome."
Okay, there was a tiny bit more to that message, but really, not much.
PRAISE THE LORD (but honestly, it was a very cautious celebration).
The negative genetic test was definitely good news because it eliminated one big potential problem, but at the moment, it didn't answer the new and other looming question regarding my liver.
On Monday, April 15th, while hurriedly shopping at Target the day before flying to Illinois for Easter, I received a phone call from my oncologist. If I haven't mentioned before that this man is definitely brilliant, well, he is. However, he is also kind of hard to track, hard to follow. He called me, and in less than 90 seconds, he explained that he had had a meeting with the radiologists, and that based on my age and gender, they believe I may have FNH (Focal Nodular Hyperplasia), and that I could have another MRI to confirm or rule this possibility out. I stood there by the Target Dollar Spot just spinning. I was already scheduled for my first tumor measurement MRI for the trial, but apparently, they cannot be combined. I am now scheduled for two MRI scans, one for this liver dilemma, and the other for the clinical trial. I will have both of these done this week, on Thursday the 6th and Friday the 7th.
In addition to these little hiccups, I am also dealing with some other side effects to the steroids. The last three months have been really hard. I started having these dizzy spells of sorts. They started slowly, with maybe some spinning moments during a meal, or several hours after a meal that led me to believe they were blood sugar related. A few began while I was driving, which was definitely nerve-racking. A few of the episodes were so bad though, that I literally had to stop what I was doing and go to bed before I either fell over or threw up. I have been seeing a functional medicine doctor for almost two years. He has been watching my adrenal system and thyroid mess closely, especially since one of the potential side effects to the trial was adrenal suppression. Last week, he basically "broke up" with me because alternative medicine doesn't seem to be helping me right now. He can be a bit extreme, but the labs don't lie. My adrenal system appears to be shutting down, and it hasn't rebounded since the final steroid injection. Last week, he referred me to a traditional endocrinologist. I am waiting for more test results and a follow-up with this new guy later this month.
So, there you have it.
If you are still reading, I want you to understand the reality right now. Several people have messaged me and approached me about this saga, and have commended me on the way I am handling it. But please know, I have many a "Mayo moment," (a phrase coined by my sweet friend, Lauren). I fall apart into tears often, but mostly during and after any doctor's appointment. My body physically hurts. My tumors hurt (I know...I read that too, and it sounds so stupid and so weird, but it's annoyingly true). My lack of musculature in my abdomen makes my back hurt. I am struggling with depression right now, and add all of that on top of a body that is really struggling to find energy, it has been really hard. My house is a disaster, like all the time. I have been trying to put sleep and rest first, but some days I just can't. I have the sweetest and most supportive friends in the world, and yet I still feel lonely. This journey isn't over, and some days, I just feel so depleted, defeated and numb.
BUT, I keep trying to remind myself of my unwritten word for the year, and that was GRACE. Grace for myself, grace for my friends and family, and grace for those who are also hurting and maybe struggling in secret.
It's just so hard.
Life can be so heavy. Like, knock you down, drag you through the mud, and then kick you again just when you are trying to stand back up.
We carry so many burdens.
We experience so much pain.
Let-downs. Betrayal. Broken promises. Shattered dreams. Grief. Heartache. Unexpected loss.
We live in a deeply darkened, sin-infiltrated world. We, collectively, are a mess. We are the products of a broken world. We are hurting. We are desperate to make sense of things, desperate for change.
BUT, lucky us, we have the answer right in front of us.
For me, Jesus is the only answer.
For me, Jesus is the One who makes sense out of confusing situations.
For me, Jesus is the One who grounds me at the end of the day.
Listen, Jesus is the only One who can make this mess unmessy. He's the only One who can make things new again. He's the only One who can bring healing to my body. He's the only one who can supply the grace I need to get through my days. I am desperately trying to trust Jesus in this and have faith that He will bring me through it, even on the days when it is just so hard.
PS. The doctor who "broke up" with me last Thursday called me on Saturday to check on me and to see how the new endocrinologist was, how my appointment went, and to remind me that he is still on my team, just hanging in the background right now. See? Grace. Just when I needed it :)
Let's rewind and refresh again. After seeing my oncologist on March 1, he wanted me to have genetic testing done and to have a liver biopsy of the "lesions" that are on/in my liver. Our appointments were scheduled for March 18.
We arrived at Mayo and went to our first appointment of the day with a genetic counselor. Her name was Jessica, and she appeared to have just graduated from college. No judgment, except that I felt old. She walked us through the process of checking for a mutation on this specific gene. She made a quick family tree where we discussed my children, my brother, my parents, aunts and uncles, and my grandparents. We discussed health issues that run in the family, when my grandparents died and from what. Based on that simple document, she said she didn't see any red flags that suggested I was a highly likely candidate for this colon cancer gene. Of the 3-4 people per million who have Desmoid tumors, 5-15% of them have the genetic condition. So, the probability that I DO NOT have this gene mutation is fairly high. If I were to test positive for the APC gene mutation, there will be ramifications for my children, obviously, and possibly for my parents, although, at this juncture, it is highly unlikely that they have it...if I test positive, I will most likely be the first person in our genetic line-up to have a spontaneous mutation. Cool, huh?! Why can't I insert eye-rolling emojis on this platform?
Anyway, after we met with Dr. Jessica, we went to another part of the hospital to await the liver biopsy. We were super early (shocking, I know), and we had quite a bit of a wait. They finally called me back, and I was admitted into a little holding area of sorts. They prepped me (gave me a rad gown), and called Heath to come back to this holding tank with me. They were running really behind, so much so that both of us fell asleep for what felt like an hour! The nurse finally called my name, and they wheeled me back to a procedure room that I had already been in twice during this journey...so that was nice, or as nice as a familiar procedure room can be.
The sonographer began searching for these lesions. She was comparing her screen to my scans, I believe, and she just kept working that wand. Pretty soon, the tiny room was bustling with people...two radiologists, some lab tech guy (can't remember his title...but he was there to await the biopsy sample to inform them if it was large enough), another nurse, and another sonographer gal. The first radiologist, who was in my line of vision, and also trying to comfort me as best as possible, stood there watching the screen with a befuddled look on his face.
**Keep in mind that I was rolled up on my left side, literally gripping the mattress. I tried to tell them that I had wanted Valium for this part...not because of the pain, but because of the anxiety. And the anxiety I definitely had. I basically sat there crying silently during this whole thing, and the only thing that was keeping me somewhat distracted from completely sobbing was the song, "Holy Spirit" by Jesus Culture. The lyrics to the chorus just kept repeating in my mind:
Holy Spirit you are welcome here,
Come flood this place and fill the atmosphere
Your Glory God is what our hearts long for
To be overcome by your presence Lord
The sonographer (also can't remember her name...maybe Kathy???) kept pushing and probing with her wand. They kept asking me to take deep breaths and to try not to move. Apparently, this was why they couldn't give me Valium. They needed me to participate. (Insert more eye-rolling emojis here...I'm sure they were wishing I had had Valium too...)
After about an hour, the other radiologist, who had been behind me, watching both screens, came over to stand in front of me. He squatted down and basically told me they were going to stop at this point. He said that it was just too risky and violated the whole "do no harm" concept. He said that when they received the scans and the orders for the biopsy, they told my doctor that they would do their best, but that basically, the lesions are in a difficult location to biopsy, and based on their observations during the ultrasound, the lesions did not appear to be as large as they did on the MRI scans. They were worried about the risk of hitting my lungs or ribs to obtain a potentially healthy sample of liver tissue.
So...that was that.
The nurse then wheeled me back to the holding area, and we packed up and left, and then waited to hear from someone.
About 10 days later, on March 29th, I received a very simple message through my Mayo Portal:
"No identifiable pathogenic mutation was found in the APC gene. Therefore, there is no evidence you have familial adenomatous polyposis (FAP) syndrome."
Okay, there was a tiny bit more to that message, but really, not much.
PRAISE THE LORD (but honestly, it was a very cautious celebration).
The negative genetic test was definitely good news because it eliminated one big potential problem, but at the moment, it didn't answer the new and other looming question regarding my liver.
On Monday, April 15th, while hurriedly shopping at Target the day before flying to Illinois for Easter, I received a phone call from my oncologist. If I haven't mentioned before that this man is definitely brilliant, well, he is. However, he is also kind of hard to track, hard to follow. He called me, and in less than 90 seconds, he explained that he had had a meeting with the radiologists, and that based on my age and gender, they believe I may have FNH (Focal Nodular Hyperplasia), and that I could have another MRI to confirm or rule this possibility out. I stood there by the Target Dollar Spot just spinning. I was already scheduled for my first tumor measurement MRI for the trial, but apparently, they cannot be combined. I am now scheduled for two MRI scans, one for this liver dilemma, and the other for the clinical trial. I will have both of these done this week, on Thursday the 6th and Friday the 7th.
In addition to these little hiccups, I am also dealing with some other side effects to the steroids. The last three months have been really hard. I started having these dizzy spells of sorts. They started slowly, with maybe some spinning moments during a meal, or several hours after a meal that led me to believe they were blood sugar related. A few began while I was driving, which was definitely nerve-racking. A few of the episodes were so bad though, that I literally had to stop what I was doing and go to bed before I either fell over or threw up. I have been seeing a functional medicine doctor for almost two years. He has been watching my adrenal system and thyroid mess closely, especially since one of the potential side effects to the trial was adrenal suppression. Last week, he basically "broke up" with me because alternative medicine doesn't seem to be helping me right now. He can be a bit extreme, but the labs don't lie. My adrenal system appears to be shutting down, and it hasn't rebounded since the final steroid injection. Last week, he referred me to a traditional endocrinologist. I am waiting for more test results and a follow-up with this new guy later this month.
So, there you have it.
If you are still reading, I want you to understand the reality right now. Several people have messaged me and approached me about this saga, and have commended me on the way I am handling it. But please know, I have many a "Mayo moment," (a phrase coined by my sweet friend, Lauren). I fall apart into tears often, but mostly during and after any doctor's appointment. My body physically hurts. My tumors hurt (I know...I read that too, and it sounds so stupid and so weird, but it's annoyingly true). My lack of musculature in my abdomen makes my back hurt. I am struggling with depression right now, and add all of that on top of a body that is really struggling to find energy, it has been really hard. My house is a disaster, like all the time. I have been trying to put sleep and rest first, but some days I just can't. I have the sweetest and most supportive friends in the world, and yet I still feel lonely. This journey isn't over, and some days, I just feel so depleted, defeated and numb.
BUT, I keep trying to remind myself of my unwritten word for the year, and that was GRACE. Grace for myself, grace for my friends and family, and grace for those who are also hurting and maybe struggling in secret.
It's just so hard.
Life can be so heavy. Like, knock you down, drag you through the mud, and then kick you again just when you are trying to stand back up.
We carry so many burdens.
We experience so much pain.
Let-downs. Betrayal. Broken promises. Shattered dreams. Grief. Heartache. Unexpected loss.
We live in a deeply darkened, sin-infiltrated world. We, collectively, are a mess. We are the products of a broken world. We are hurting. We are desperate to make sense of things, desperate for change.
BUT, lucky us, we have the answer right in front of us.
For me, Jesus is the only answer.
For me, Jesus is the One who makes sense out of confusing situations.
For me, Jesus is the One who grounds me at the end of the day.
Listen, Jesus is the only One who can make this mess unmessy. He's the only One who can make things new again. He's the only One who can bring healing to my body. He's the only one who can supply the grace I need to get through my days. I am desperately trying to trust Jesus in this and have faith that He will bring me through it, even on the days when it is just so hard.
PS. The doctor who "broke up" with me last Thursday called me on Saturday to check on me and to see how the new endocrinologist was, how my appointment went, and to remind me that he is still on my team, just hanging in the background right now. See? Grace. Just when I needed it :)
Sunday, March 17, 2019
Final Injection and Other News
Just a little continuation of the Desmoid tumor drama...
We went to Mayo on March 1 for my third and final steroid injection for the Desmoid tumors. It was another smooth, although a bit painful, injection with a new radiologist. He, too, is part of the team who is working on this clinical trial. I had no idea, and in this moment, I can not for the life of me recall his name. Anyway, he was very kind, encouraging, and had an excellent bedside manner. The sonographer was the same one I had had for injection #2, and she was also kind, familiar, and comforting. From this point forward, there will be no more injections. Only waiting, and biannual scans for the next two years.
Let's rewind though. Our first appointment that day was with my oncologist, Dr. Attia. I hadn't seen him since our original consultation back in November. He only has clinic hours on certain days, and our paths just haven't crossed. If you remember, I had a baseline MRI done back in December because the radiologist feared I had three tumors instead of one, which was accurate. That MRI also showed some lesions on my liver, which the orthopedic doctor mentioned, but was not concerned about. Well, Dr. Attia had a completely different vantage point. (These lesions have been present for quite some time, but no one had been concerned about them in Orlando either.)
When he walked into the room, his research nurse and I were discussing the cost of my MRI. He sat down and immediately asked what we were talking about, and then followed it up with, "Well, you're going to need another MRI." My response was, "Yes, of course, in June, right?" But no. He said I needed one soon. He then asked me if I had had a colonoscopy...to which I responded, "ummmm no?!?!" (thinking to myself, why would I elect to have one of those?!?) He proceeded to explain these lesions on my liver. He is concerned because if I have the genetic form of these Desmoid tumors (Familial Eadenomatous Polyposis), I will be at a predisposition for colon cancer. Apparently, the liver is often times one of the first places that other cancers metastasize to. So, basically, he just wants to rule this out. He apologized that all of this is happening, and he said he was so sorry to give us this information, but that he is my doctor and wants to do his best to take care of me. He said that "tissue is the issue" and he would ideally love to have a biopsy done. So, this is the route we have chosen to start down.
I have been scheduled for genetic testing and for a liver biopsy tomorrow morning at Mayo. We will be leaving super early in the morning to get there for the first appointment at 9 am. We covet your prayers. I have been super busy with Kenton's birthday weekend, my parents being here, and then with Kenton's surgery and recovery that I haven't allowed myself to stop and think through this news. Anytime anyone says cancer, I think it is safe to say that the initial response is fear. I am trying not to be overwhelmed with fear and uncertainty, but I am scared. I am nervous. I am anxious. I can feel the emotional dam that is about to break open and send a flood of tears. I have given myself permission to cry and be upset, but I don't want it to consume me...not until we have more answers. I am trying to stay calm though.
Thank you for walking alongside us as the plot keeps shifting. Thank you for your prayers, your words of encouragement, the messages, the snail mail...it does not go unnoticed and we are so thankful for our tribe.
We went to Mayo on March 1 for my third and final steroid injection for the Desmoid tumors. It was another smooth, although a bit painful, injection with a new radiologist. He, too, is part of the team who is working on this clinical trial. I had no idea, and in this moment, I can not for the life of me recall his name. Anyway, he was very kind, encouraging, and had an excellent bedside manner. The sonographer was the same one I had had for injection #2, and she was also kind, familiar, and comforting. From this point forward, there will be no more injections. Only waiting, and biannual scans for the next two years.
Let's rewind though. Our first appointment that day was with my oncologist, Dr. Attia. I hadn't seen him since our original consultation back in November. He only has clinic hours on certain days, and our paths just haven't crossed. If you remember, I had a baseline MRI done back in December because the radiologist feared I had three tumors instead of one, which was accurate. That MRI also showed some lesions on my liver, which the orthopedic doctor mentioned, but was not concerned about. Well, Dr. Attia had a completely different vantage point. (These lesions have been present for quite some time, but no one had been concerned about them in Orlando either.)
When he walked into the room, his research nurse and I were discussing the cost of my MRI. He sat down and immediately asked what we were talking about, and then followed it up with, "Well, you're going to need another MRI." My response was, "Yes, of course, in June, right?" But no. He said I needed one soon. He then asked me if I had had a colonoscopy...to which I responded, "ummmm no?!?!" (thinking to myself, why would I elect to have one of those?!?) He proceeded to explain these lesions on my liver. He is concerned because if I have the genetic form of these Desmoid tumors (Familial Eadenomatous Polyposis), I will be at a predisposition for colon cancer. Apparently, the liver is often times one of the first places that other cancers metastasize to. So, basically, he just wants to rule this out. He apologized that all of this is happening, and he said he was so sorry to give us this information, but that he is my doctor and wants to do his best to take care of me. He said that "tissue is the issue" and he would ideally love to have a biopsy done. So, this is the route we have chosen to start down.
I have been scheduled for genetic testing and for a liver biopsy tomorrow morning at Mayo. We will be leaving super early in the morning to get there for the first appointment at 9 am. We covet your prayers. I have been super busy with Kenton's birthday weekend, my parents being here, and then with Kenton's surgery and recovery that I haven't allowed myself to stop and think through this news. Anytime anyone says cancer, I think it is safe to say that the initial response is fear. I am trying not to be overwhelmed with fear and uncertainty, but I am scared. I am nervous. I am anxious. I can feel the emotional dam that is about to break open and send a flood of tears. I have given myself permission to cry and be upset, but I don't want it to consume me...not until we have more answers. I am trying to stay calm though.
Thank you for walking alongside us as the plot keeps shifting. Thank you for your prayers, your words of encouragement, the messages, the snail mail...it does not go unnoticed and we are so thankful for our tribe.
Tuesday, February 19, 2019
Tipping Points
I'm not sure if that is the technical term I am looking for, but I think you know what I mean...things that tip the scales one direction or the other...or, the idioms...the straw that broke the camel's back, the drop that overflowed the bucket (I'm fairly certain that is an idiom I learned in Spanish in Costa Rica, but the concept applies in English as well). No matter how you say it, the concept remains the same: the seemingly small or insignificant (insert word STUPID here) thing that just tips you over the edge.
Well, who knew that mine would come as the result of a failed morning at Quest Diagnostics.
No, don't worry...this moment didn't come as the result of bad news, but rather the inability to get labs drawn because of two minutes. Time-sensitive labs that needed to be drawn by 9 am, but because of a computer glitch and my name being called at 9:02, those labs could not be completed. Also, the inability to submit lab materials (ahem, a stool sample for one of my children), because I was not told exactly how to store them, nor did I sign her name in for the drop-off. Silly me, I thought I could just drop those off when I did my own lab tests. Obviously, I was wrong. So stupid. In the big scheme of things, NOT A BIG DEAL, like, AT ALL. But, it turned into an hour-long "tipping point" into the abyss of scary and unknown things for me.
Time. Health. House. Home. School. Church. Family. LIFE.
Basically, everything that is burdening me right now.
TIME, because I was now going to be late for the rest of my day...my day that I thought I had planned out "so well," but in reality, got messed up right out of the gate. I spent my entire drive home, AND my entire 25-minute drive to the ranch just sobbing. Ugh.
HEALTH, because, well, I try my hardest to keep my chin up and keep moving forward, but there are days when the giant question mark of the unknowns in my health just knock me down. I try to hold it all together and stay positive, but when I allow myself to stop and think about some of these things, I just fall apart. I tend to keep myself really busy, which isn't necessarily wise. I'm in nearly constant pain, which is another constant reminder of the whole mess.
HOUSE, because we have been looking for a house for over a year and we keep coming up empty.
HOME, because, well, that whole "keeping really busy" thing kind of affects the whole "maintaining our home" thing. I have piles, and I have clutter. Annnnnddddddd I just took down the Christmas tree on the 16th...of February. Possibly a new personal record. In my defense, that Christmas tree has brought me joy every single day since Christmas, so that makes it socially acceptable these days, right?
SCHOOL, because who knew that making decisions about your children's schooling would be so RIDICULOUSLY HARD?!? Do any of you remember the book, Choosing God's Best? Obviously, it was about dating and marriage relationships, but I feel this way when thinking about who will be involved in my children's learning experiences, and where those learning experiences will take place. Will they be challenged? Will they be nurtured? Will they be loved? Will they grow spiritually, emotionally, academically, socially, and mentally? UGH. So.much.pressure.
CHURCH, because I have been wrestling for quite some time with what my role is in the church at this point. Our life has changed so much in the last several years. Trying to really think through where I might be gifted, how I can use those gifts, and how to serve the Church in this crazy, busy, and quite frankly, overwhelming season.
FAMILY, because, I mean, whose family is perfect? Not ours. Everyone has challenges. Everyone has struggles. Our "plate" has been kind of full lately, so there are days where it just feels suffocating.
So, basically, that poor woman at Quest had no idea that when she told me I couldn't do my labs and that my poop samples weren't accurately stored, she would have a front row seat to my unraveling, that tipping point for me. And yes, the tears began inside the open hallway in Quest...right smack dab in the middle of it. Where are my facepalm emojis on this laptop?!?!
It's lame, I know. Reflecting on it now, and in the moments since Friday morning, I'm reminded of how much I am NOT in control...OF ANYTHING. I can do my best to plan wisely and be a good steward of my time, my health, my house, my home, our decisions for our family...but in the end, it is God who knows how things will shake out. It is God and God alone who knows and has a purpose for all of these things. I just have to keep trusting that it will be for His good in the end, you know? What a scary and comforting place to be, right? Scary because I am not in charge, but comforting because I am not in charge. God's got this.
I've been reading this amazing book by Lysa TerKeurst. It's called, It's Not Supposed to Be This Way. I'm not finished with it yet, but oh my, SO MUCH GOODNESS so far. She was talking about these hard things that we go through, and that yes, it kind of SUCKS (sorry...blunt), but that perhaps, we are missing the goodness of God through our struggles. That perhaps God's story THROUGH our heartache and struggles is the story that matters most. Not the end outcome, but how we live in the NOW, and how we anchor ourselves to God during these times. God's got this. He already knows how the story ends.
But still, so hard. Just so very hard sometimes.
One of my favorite shows of all time is Friends. The theme song begins with, "So no one told you life was gonna be this way..." But Jesus did. He said, "In this world you will have trouble. But take heart! I have overcome the world." Trying to take heart and trust right now. God pulled me back from plummetting into my scary abyss. It's all going to be okay. God's got this.
And He hasn't failed me yet.
Well, who knew that mine would come as the result of a failed morning at Quest Diagnostics.
No, don't worry...this moment didn't come as the result of bad news, but rather the inability to get labs drawn because of two minutes. Time-sensitive labs that needed to be drawn by 9 am, but because of a computer glitch and my name being called at 9:02, those labs could not be completed. Also, the inability to submit lab materials (ahem, a stool sample for one of my children), because I was not told exactly how to store them, nor did I sign her name in for the drop-off. Silly me, I thought I could just drop those off when I did my own lab tests. Obviously, I was wrong. So stupid. In the big scheme of things, NOT A BIG DEAL, like, AT ALL. But, it turned into an hour-long "tipping point" into the abyss of scary and unknown things for me.
Time. Health. House. Home. School. Church. Family. LIFE.
Basically, everything that is burdening me right now.
TIME, because I was now going to be late for the rest of my day...my day that I thought I had planned out "so well," but in reality, got messed up right out of the gate. I spent my entire drive home, AND my entire 25-minute drive to the ranch just sobbing. Ugh.
HEALTH, because, well, I try my hardest to keep my chin up and keep moving forward, but there are days when the giant question mark of the unknowns in my health just knock me down. I try to hold it all together and stay positive, but when I allow myself to stop and think about some of these things, I just fall apart. I tend to keep myself really busy, which isn't necessarily wise. I'm in nearly constant pain, which is another constant reminder of the whole mess.
HOUSE, because we have been looking for a house for over a year and we keep coming up empty.
HOME, because, well, that whole "keeping really busy" thing kind of affects the whole "maintaining our home" thing. I have piles, and I have clutter. Annnnnddddddd I just took down the Christmas tree on the 16th...of February. Possibly a new personal record. In my defense, that Christmas tree has brought me joy every single day since Christmas, so that makes it socially acceptable these days, right?
SCHOOL, because who knew that making decisions about your children's schooling would be so RIDICULOUSLY HARD?!? Do any of you remember the book, Choosing God's Best? Obviously, it was about dating and marriage relationships, but I feel this way when thinking about who will be involved in my children's learning experiences, and where those learning experiences will take place. Will they be challenged? Will they be nurtured? Will they be loved? Will they grow spiritually, emotionally, academically, socially, and mentally? UGH. So.much.pressure.
CHURCH, because I have been wrestling for quite some time with what my role is in the church at this point. Our life has changed so much in the last several years. Trying to really think through where I might be gifted, how I can use those gifts, and how to serve the Church in this crazy, busy, and quite frankly, overwhelming season.
FAMILY, because, I mean, whose family is perfect? Not ours. Everyone has challenges. Everyone has struggles. Our "plate" has been kind of full lately, so there are days where it just feels suffocating.
So, basically, that poor woman at Quest had no idea that when she told me I couldn't do my labs and that my poop samples weren't accurately stored, she would have a front row seat to my unraveling, that tipping point for me. And yes, the tears began inside the open hallway in Quest...right smack dab in the middle of it. Where are my facepalm emojis on this laptop?!?!
It's lame, I know. Reflecting on it now, and in the moments since Friday morning, I'm reminded of how much I am NOT in control...OF ANYTHING. I can do my best to plan wisely and be a good steward of my time, my health, my house, my home, our decisions for our family...but in the end, it is God who knows how things will shake out. It is God and God alone who knows and has a purpose for all of these things. I just have to keep trusting that it will be for His good in the end, you know? What a scary and comforting place to be, right? Scary because I am not in charge, but comforting because I am not in charge. God's got this.
I've been reading this amazing book by Lysa TerKeurst. It's called, It's Not Supposed to Be This Way. I'm not finished with it yet, but oh my, SO MUCH GOODNESS so far. She was talking about these hard things that we go through, and that yes, it kind of SUCKS (sorry...blunt), but that perhaps, we are missing the goodness of God through our struggles. That perhaps God's story THROUGH our heartache and struggles is the story that matters most. Not the end outcome, but how we live in the NOW, and how we anchor ourselves to God during these times. God's got this. He already knows how the story ends.
But still, so hard. Just so very hard sometimes.
One of my favorite shows of all time is Friends. The theme song begins with, "So no one told you life was gonna be this way..." But Jesus did. He said, "In this world you will have trouble. But take heart! I have overcome the world." Trying to take heart and trust right now. God pulled me back from plummetting into my scary abyss. It's all going to be okay. God's got this.
And He hasn't failed me yet.
Tuesday, January 15, 2019
Mayo Clinical Trial Update
I have had so many friends reach out and ask how things are going/how things went in December. I wanted to write a basic update about how things went at the first appointment, or at least continue the conversation since I last wrote.
The MRI was honestly the worst part of the first round of appointments. I was already nervous, not for the MRI itself, but just the whole experience. So, when I was called back to the lab area outside of the suite, I was a bit confused. I wasn't told ahead of time that contrast would be used...and while I have had contrast multiple times, it just caught me off guard. I am typically a "hard stick" when it comes to IVs, and I wasn't thrilled with the nurse who was trying to deal with my veins. Don't get me wrong. She was wonderfully kind but struggled with the IV nonetheless. The final product was a rather uncomfortable hand IV, but hey, anything has to be better than major surgery, right?
The next thing that caught me off guard was the fact that I would have to enter the machine head first. Also, Mayo doesn't use the open MRI because they feel it is not as accurate. I was prepared for the tiny tube, but not the fact that my head was entering first. When I walked in, one of the nurses just stood there...waiting for me as I stared at her, wondering why the pillow was in the wrong place. Reality set in, and I lay down where she pointed. As they quickly bustled around, clipping things to me and putting the cage type deal around my abdomen, I slipped into a panic attack. So ridiculous. I didn't start crying until the second nurse came over and asked the first nurse, "ummm what's the matter with her?" [so many facepalm emojis here] I was then embarrassed, but eventually calmed down.
The MRI was fine, and the nurse was very soothing to listen to, as opposed to the recorded voices telling you to "breathe in, breathe out, breathe in, NOW HOLD IT AND DON'T MOVE A MUSCLE." They played lovely Christmas music for me, and all was well. When I exited the tube, however, I got a little faint feeling and had to sit there and regroup. But, it was finally over.
My friends picked me up from the hospital, and we enjoyed an afternoon of Christmas shopping at IKEA, and then a late lunch at one of my favorite eateries, Newk's.
On Wednesday, December 5, Heath and I returned to Mayo to meet the other doctors and to begin the actual clinical trial. There was a lot of paperwork to complete, including consent forms and a series of questions about all the things...physical symptoms, emotional awareness, psychological questions, etc. The orthopedic surgeon informed us that the radiologist had been correct. There are actually three tumors in a bit of a line along my ribs. They can't completely tell if they are necessarily connected, but they can see that the largest of the three appears to be metabolically inactive. Because of this observation, they have decided to inject the steroids into the smallest, most active tumor. I was still feeling a bit nervous, even after the other research nurse so gently said to me, "Why are you nervous? What is there to be nervous of? Haven't you ever had a steroid injection? You'll be fine..." (insert eye rolling emoji here). Despite her encouragement, based on the MRI experience the day before, we all agreed that I would take a Valium to help ease the nerves. :)
The actual injection took place a few hours later. The radiologist who is helping with this part of the trial was incredible. She was very down to earth and had a teaching demeanor. She was very knowledgeable about the trial and the research behind it. It was nice hearing her "teach" this to the radiology tech who was helping with the ultrasound. It just clarified some questions I didn't even realize I had. She was so funny, in a super nerdy way. She was so excited that within my body, we have a natural, built-in control...two actually. She was just thrilled about this added bonus ;) I am so glad I can provide three tumors for them to study!
The injection itself was fairly straightforward. The radiologist first injected lidocaine to numb the whole area. Then, with the use of the ultrasound, they slowly injected the allotted amount of Kenalog into the chosen tumor. It was slightly painful, but more of a burning sensation than anything else. We waited for a few minutes after it was done, and then I went on my way!
For the first few days after the injection, I had a pretty dull but constant pain at the site. It hurt to twist or turn my body too quickly and basically felt like a deep bruise along my ribs. BUT, on the third day after the steroids, MY BODY WAS SHOCKINGLY PAIN-FREE. No more nerve pain, no more tumor pain, no more back pain...it was kind of glorious. This pain-free sensation lasted for about three weeks, maybe four. Then, the pain gradually returned. I can now feel my tumors constantly...when I breathe, when I cough, when I stand up or lie down, when I twist my core...it's kind of a pain, no pun intended :) It's so crazy. I didn't realize how much pain I had been in until it was gone. I am anxious to discuss this whole experience with the doctors.
Which leads me to my final point...tomorrow marks six weeks post-injection. We are driving up to
Jacksonville in the morning to meet with the doctors again, and then onto the second injection in the afternoon. I believe the oncologist will be in the meeting tomorrow, and I think we might be scheduling an appointment for me to meet with a genetic counselor. Have I mentioned that a small percentage of these tumors are hereditary? Most likely, mine isn't, but we want to rule it out. Just another layer to this complicated saga. :) We will cross that bridge when we get there.
Unfortunately, we won't know if this trial is working for quite some time. I am trying not to react to the constant pain and assume that the tumors are growing. The best part of this trial is that this is my path now. No need to really think about the other treatment options at this moment because I have committed to the trial for two years. Of course, if we see that it is definitely not working, we will jump ship and start something else anew. Who knows...maybe by the time this trial is over, there might be a cure, or at least more knowledge about these tumors!
I am trying desperately to maintain a positive attitude. There are hard days...especially when my body just hurts, but for no external reasons that others might see or understand. I'm grateful for my tribe of people...my husband, our families, our amazing friends, near and far, the phone calls, the texts, the snail mail...I feel so covered in prayers and encouragement. I keep reminding myself that this is just a season...that this, too, shall pass...we have weathered some crazy storms during our life together, and we will continue to weather this one, too. And hopefully, we will emerge at the end to a beautiful rainbow, one full of peace and maybe the understanding of why we have been in this storm in the first place.
Thanks for traveling alongside us.
The MRI was honestly the worst part of the first round of appointments. I was already nervous, not for the MRI itself, but just the whole experience. So, when I was called back to the lab area outside of the suite, I was a bit confused. I wasn't told ahead of time that contrast would be used...and while I have had contrast multiple times, it just caught me off guard. I am typically a "hard stick" when it comes to IVs, and I wasn't thrilled with the nurse who was trying to deal with my veins. Don't get me wrong. She was wonderfully kind but struggled with the IV nonetheless. The final product was a rather uncomfortable hand IV, but hey, anything has to be better than major surgery, right?
The next thing that caught me off guard was the fact that I would have to enter the machine head first. Also, Mayo doesn't use the open MRI because they feel it is not as accurate. I was prepared for the tiny tube, but not the fact that my head was entering first. When I walked in, one of the nurses just stood there...waiting for me as I stared at her, wondering why the pillow was in the wrong place. Reality set in, and I lay down where she pointed. As they quickly bustled around, clipping things to me and putting the cage type deal around my abdomen, I slipped into a panic attack. So ridiculous. I didn't start crying until the second nurse came over and asked the first nurse, "ummm what's the matter with her?" [so many facepalm emojis here] I was then embarrassed, but eventually calmed down.
The MRI was fine, and the nurse was very soothing to listen to, as opposed to the recorded voices telling you to "breathe in, breathe out, breathe in, NOW HOLD IT AND DON'T MOVE A MUSCLE." They played lovely Christmas music for me, and all was well. When I exited the tube, however, I got a little faint feeling and had to sit there and regroup. But, it was finally over.
My friends picked me up from the hospital, and we enjoyed an afternoon of Christmas shopping at IKEA, and then a late lunch at one of my favorite eateries, Newk's.
On Wednesday, December 5, Heath and I returned to Mayo to meet the other doctors and to begin the actual clinical trial. There was a lot of paperwork to complete, including consent forms and a series of questions about all the things...physical symptoms, emotional awareness, psychological questions, etc. The orthopedic surgeon informed us that the radiologist had been correct. There are actually three tumors in a bit of a line along my ribs. They can't completely tell if they are necessarily connected, but they can see that the largest of the three appears to be metabolically inactive. Because of this observation, they have decided to inject the steroids into the smallest, most active tumor. I was still feeling a bit nervous, even after the other research nurse so gently said to me, "Why are you nervous? What is there to be nervous of? Haven't you ever had a steroid injection? You'll be fine..." (insert eye rolling emoji here). Despite her encouragement, based on the MRI experience the day before, we all agreed that I would take a Valium to help ease the nerves. :)
The actual injection took place a few hours later. The radiologist who is helping with this part of the trial was incredible. She was very down to earth and had a teaching demeanor. She was very knowledgeable about the trial and the research behind it. It was nice hearing her "teach" this to the radiology tech who was helping with the ultrasound. It just clarified some questions I didn't even realize I had. She was so funny, in a super nerdy way. She was so excited that within my body, we have a natural, built-in control...two actually. She was just thrilled about this added bonus ;) I am so glad I can provide three tumors for them to study!
The injection itself was fairly straightforward. The radiologist first injected lidocaine to numb the whole area. Then, with the use of the ultrasound, they slowly injected the allotted amount of Kenalog into the chosen tumor. It was slightly painful, but more of a burning sensation than anything else. We waited for a few minutes after it was done, and then I went on my way!
For the first few days after the injection, I had a pretty dull but constant pain at the site. It hurt to twist or turn my body too quickly and basically felt like a deep bruise along my ribs. BUT, on the third day after the steroids, MY BODY WAS SHOCKINGLY PAIN-FREE. No more nerve pain, no more tumor pain, no more back pain...it was kind of glorious. This pain-free sensation lasted for about three weeks, maybe four. Then, the pain gradually returned. I can now feel my tumors constantly...when I breathe, when I cough, when I stand up or lie down, when I twist my core...it's kind of a pain, no pun intended :) It's so crazy. I didn't realize how much pain I had been in until it was gone. I am anxious to discuss this whole experience with the doctors.
Which leads me to my final point...tomorrow marks six weeks post-injection. We are driving up to
Jacksonville in the morning to meet with the doctors again, and then onto the second injection in the afternoon. I believe the oncologist will be in the meeting tomorrow, and I think we might be scheduling an appointment for me to meet with a genetic counselor. Have I mentioned that a small percentage of these tumors are hereditary? Most likely, mine isn't, but we want to rule it out. Just another layer to this complicated saga. :) We will cross that bridge when we get there.
Unfortunately, we won't know if this trial is working for quite some time. I am trying not to react to the constant pain and assume that the tumors are growing. The best part of this trial is that this is my path now. No need to really think about the other treatment options at this moment because I have committed to the trial for two years. Of course, if we see that it is definitely not working, we will jump ship and start something else anew. Who knows...maybe by the time this trial is over, there might be a cure, or at least more knowledge about these tumors!
I am trying desperately to maintain a positive attitude. There are hard days...especially when my body just hurts, but for no external reasons that others might see or understand. I'm grateful for my tribe of people...my husband, our families, our amazing friends, near and far, the phone calls, the texts, the snail mail...I feel so covered in prayers and encouragement. I keep reminding myself that this is just a season...that this, too, shall pass...we have weathered some crazy storms during our life together, and we will continue to weather this one, too. And hopefully, we will emerge at the end to a beautiful rainbow, one full of peace and maybe the understanding of why we have been in this storm in the first place.
Thanks for traveling alongside us.
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