What's REALLY going on? My last 8 months journey...

Deciding whether or not to write this post has been a significant personal battle. First of all, it lets everyone in—not just those that I chose by emailing or asking questions or eliciting to pray. As I think back on my word for this year “freedom,” it relates. My “freedom” will come, I know, through vulnerability. I’m good at being transparent with the past with everyone and vulnerable with the current with whom I choose. The connection comes in the present. I was saving my story for a “look what happened to me” and sharing the parts I wanted. I feel a tug to share now.

I could write for days the lessons I have learned thus far but I’ll just update all to the backbone of the story. The systemic effects of this reality have far-reaching effects that will go far beyond me and the now, and I know it will be another chapter in my story.

I don’t want to share it, at all. I need to share it.

Warning: it’s long!

I’m a Speech Pathologist, as most of you know. The neck is my bag. I know everything in there—where it originates, what innervates it, where it goes, etc. I know the structures. I know there is no “waste” in there. You need everything in there. I’m always feeling my neck area—weird, I know, but I do. [Who is NOT weird in some way anyway?] Last Spring, I started to feel that my lymph nodes felt different from each other. I asked around. No one seemed concerned. I assumed I was fighting something and didn’t know it. When you work with children 3 and under, you are always fighting off some “thing.” It never went down but only became bigger. It moved. It seemed more superficial than deep. The lymph nodes were asymmetrical. I was busy preparing for Luba and was neck deep in the visa process so I let it go.

Luba arrived in October (2013). Two weeks later, I got sick and that forced me to go to the doctor for treatment. He treated the primary issue that brought me in and as he was leaving, I asked him haphazardly to check my lymph node to see if he felt like it was as swollen as I thought. The look on his face was enough for me to know already that it wasn’t a lymph node we were worried about. He asked when I first felt it. He asked if anyone in my family had had cancer. I knew the other issue that I was just treated for was to get me in there.

The journey began…..

What timing! Luba had just arrived. As he became acquainted with the area, he was now being dragged all over Long Beach to medical appointments. He got to see me at my worst, right out of the gate. Our “newlywed” stage felt robbed. I had an ultrasound and subsequent MRI. When the MRI technician came in midway through to insert the contrast dye, he asked “Why did you wait so long?” I knew he had found a mass, and I knew it was large. I had consultations with neurosurgery and ENT. I had an angiogram to ensure it wasn’t connected to the carotid artery. I had another ultrasound guided biopsy on the mass for fine needle aspiration. It rendered nothing (well, nothing but a HORRID experience. This radiologist/tech combo refused to give anesthetic). I was under the care of what I would consider very subpar physicians. The stress level was skyrocketing as I finished my fieldwork for ABA, prepped for the exam, finished planning a wedding, and did the “rest of life’s necessities.”

Cancer was ruled out. The thyroid was ruled out as being an issue right now although some nodules showed up. One of the imaging reports mentioned possible schwannoma so I googled it. I began to hope and pray that it would not be the diagnosis. I kept seeing vagal schwannoma pop up. The incidence is small. It is a very rare tumor of head/neck tumors. I also kept seeing “brain tumor” as I googled this specific tumor. Technically, it was considered a brain tumor due to its origin and being a cranial nerve. I kept seeing support groups pop up. Is this where I was heading? It couldn’t be. It hits too close to home. I am the one who has the profession to help others who have effects from this diagnosis. Surely it was a tumor in the parotid gland or something that could just come out. Inconvenience and out!

After several visits and physician conversations, it was strongly assumed that I had a schwannoma, a nerve sheath tumor. It was a very real possibility of being the vagus nerve. It was nestled up against my carotid artery and jugular vein. I lost it, emotionally. I knew what that meant. Damage to that nerve can be quite intense. It’s permanent. Although I knew as an SLP what this meant, I asked the surgeon at the time “So if you cut my vagus nerve to remove the tumor, what does that mean?” To which he replied, “You are a speech pathologist, you tell me.” I was horrified. I had to say aloud that I may likely have vocal fold paralysis. My job is very important to me and is a mission. I was created to do this job. Flashes of faces that count on me daily to do my job well kept scrolling through my mind. I just walked out of there, dazed, and cried for the longest time in my car. Why does this happen to me? Why can’t it be an ovary? Do a hysterectomy, remove it, I don’t give a rip but why this area? MY area of work? How does something so rare happen to me? It seems perfect for a pedophile.

After I collected myself, I was furious. I don’t need bedside manner but that was abusive to me. I was offended. How dare you, you jack ass?! I went to see his partner who just wasn’t able to adequately answer my questions. A voice inside kicked in—RUN! They had insisted, ONE MONTH before a wedding, to take it out. It HAD to come out. I’m not a vain person but I didn’t want to have a fresh scar across my neck on my wedding day. [By the way, he had a great solution “Photoshop does wonders for pictures] Screw you, man!

I thought I had reached the bottom. I was at a loss. I couldn’t get into anyone better due to having an HMO. I couldn’t change it. Luckily, my support/prayer team through all this sent weekly well wishes and scriptures. I had/have Luba constantly ensuring that it is going to be fine.

I was fighting to see a higher level “tertiary level” ENT at UCI. I just could not be treated by a primary level ENT. This tumor is so rare. When I polled ENTs (that luckily fell in my path along the way, I knew none before this!), they all said that they would not touch me and that they would refer me to a specialist who worked in this carotid area every day and one that would work as a team approach. Ah, the words of ETHICAL physicians!

Seriously, God sent an angel in the form of an ENT. The connection was crazy in how our paths met. He’s #1 in Long Beach. He met with me and literally soothed my soul. He said these things are slow growing. I could even watch and wait for years. He released me to enjoy the wedding and deal with it after. My soul came alive and parts of me that I thought had lost the battle awoke.

I had just enough in me every day to rally to fight it. The detail-oriented OCD person in me rose for the fight. I filed a formal complaint with the department of managed healthcare as I had exhausted all my rights within my insurance company. I had little hopes as I faxed in my case to a government agency in Sacramento. I was sure they were busy and backed up with other things. Ten minutes later, someone called me to say that she was going to fight with me. She saw my need and felt my desperation. She knew I needed a specialist. She was communicative. She was supportive. She gave me tips. She felt like a partner. I was energized by hope. I gave it 200%. When I came home from the wedding, I found that we (took a village) won! The state had a legal team on it and had an independent medical review. I needed a higher level ENT with a certain kind of expertise and they overturned my insurance company. The insurance company now had to pay for UCI. It’s also largely because of the other ENT’s support and input that my win was a success.

Where am I now? Happily seeing a surgeon at UCI. I’m deciding between “watch and wait” (as these are benign and slow growing) and surgery (inevitable at some point). Many wait due to possible/likely permanent side effects from surgery. I feel like I need to close this chapter in my life and face the future. I have a huge army on my side on earth and in the heavens and I know I’ll be ok. Of course I hope I’m OK in the way that I hope to be OK but either way, God’s gotten me this far with everything lined up perfectly and supernaturally. He won’t stop before/during surgery. I’ve had other “Only God” happenings over the past week but I’ll save those for now. It has been further confirmation that we’ve got this and literally supernatural answers to questions upon which I’ve been dwelling.

Looking back: the timing of Luba coming? It seemed terrible. I felt so badly for him. I felt like a failure. He arrives and then the bottom fell out. I see now though that I would not have made it. He has been to all of my appointments and having another person there even when my struggle was internal and unvoiced made the difference. We definitely hit the ground running. Because of this and other visa issues, we have dealt with issues that I’m sure others don’t face until years of marriage.

Every day is a crap shoot. Emotions can be anywhere at any given moment and can change in a second’s notice depending on what triggers it as I think of a surgery in that critical area and the aftermath financially, physically, etc. Thank you for those that know and have been patient.

For others, some of you have had no idea that this was going on. I’ve made it to work, I’ve taken my ABA board exam, I got married, I celebrated on a honeymoon, and I’ve fulfilled my duties in ministry. All the while, there was an imaginary thought bubble over me that changed from moment to moment but often said “See me. I’m here and trying my best to stay engaged, but I’m worried. I’m mad. I’m scared. I’m hopeful. I’m wearing my brave face.” It reminds me to imagine a thought bubble over everyone. We walk around with a mask, and sometimes in a catatonic state juggling a myriad of emotions. Many of us are in survival mode but never let anyone know. It reminded me of this video that went viral a while back. Watch it here (for real, this is your Sunday sermon...watch with a new perspective). Let’s see each other. We may not know the situation but let’s treat each other with kindness. No one knows what another is dealing with under the surface. Sometimes our heads are barely above water. We can't rely on another's "good" answer to our "How are you?" Assume others need care. Show support. Share emotion. Let people in. In the end, it's people that matter. It's your community that make the difference. 

I’m going to be okay. You are going to be okay.

Thank you for reading and being on my team & thankful for "my people,"

Danielle

Enjoy my best Halloween picture! There's my "thing" there that show you why the MRI tech was so shocked. It has been affectionately named "testicle" by Luba or "Bumpbessie 2.0" by Mom. Who remembers Bumpbessie 1.0 in middle school???