• Joni Ganguzza

Gaudete - Learning to Rejoice Again

It is the 3rd week of the Advent season in the Catholic church and at my house which means it is "pink candle week". On an Advent wreath there are 4 candles for each of the weeks of advent. Three candles are purple and one is rose colored. The rose one is lit starting on Gaudete Sunday. Gaudete is latin for "rejoice" and that has been my focus this week.

"Rejoice in the Lord always; again I say, rejoice. Let your forbearance be known to all, for the Lord is near at hand; have no anxiety about anything, but in all things, by prayer and supplication, with thanksgiving, let your requests be known to God" Philippians 4:4–6

For me, this has been a week of great rejoicing. After getting 4 doses of IVIG 2 weeks ago and one dose of chemotherapy (Rituxamab), this week has been the best I have physically felt since mid October. I have been able to work and we even celebrated the baptism of our seventh child Blaise. The Rituximab left me with body aches, joint pain and chills for about 10 days afterwards, but that has resolved along with my imbalance, dizziness and most of my right sided weakness. However, twice after being hospitalized and receiving 4 doses of IVIG, I have felt great and withing 2-3 more weeks have declined so I am cautiously optimistic about the near future.

I was referred to a new neurologist this week. The one who had been previously taking care of me who I am extremely grateful for going above and beyond to figure out what was wrong with me, is a vascular (stroke) specialist and since my neurological issue is autoimmune in nature (anti GAD65 autoimmune encephalitis), I was referred to a neurologist who regularly treats autoimmune diseases and more often orders rituximab and IVIG. The good news is I finally feel like I have a solid outpatient plan to hopefully avoid further relapses and hospitalizations. The bad news is, January is going to be a hard month for me.

Apparently the initial dosing when starting Rituximab to wipe out all my B cells is supposed to be once weekly for 4 weeks. So I am 3 doses short on the initiation of this drug. So pending insurance approval, the next 3 weeks I will have Rituximab weekly. After that, every 4 months I have my CD 20 level checked and typically will have a booster infusion every 6 months. The Neuro Oncologist said I would need this medication monthly, so every 6 months sounds like a better deal, but I am absolutely dreading the 3 weeks of weekly dosing as I had rigors, severe body aches, chills during the infusion and afterwards for 10 days the pain and chills continued.

The other specialist I saw was a Neuro Ophthalmologist. He agreed my eye movements with nystagmus and double vision were consistent with someone that had a lack of the GABA inhibitor. He was unsure if the teratoma had caused a paraneoplastic process and my body is continuing to make anti GAD65 from B cell memory from the teratoma OR if this is just another autoimmune process involving anti GAD65 and the teratoma was incidental OR since paraneoplastic syndrome is associated with ovarian cancer as well, if I could have a microscopic ovarian cancer on the remaining ovary that wasn't active on my PET scan that is continuing to produce this antibody. Any of those scenarios, the treatment won't change. It is still Rituximab, IVIG as needed and every 6 months get an ultrasound to rule out ovarian cancer. Regarding my double vision, I can't get a prism lens for my double vision as it is with lateral gaze (when I look to left or right) and not straight on. All I can do is have frames that block off my peripheral vision or put tape on the end of my frames.

Through these tumultuous 3 weeks, what I have discovered about myself, for the first time in my life, I truly feel content in the moment. I am rejoicing in feeling good and having a normal day with my kids or at work. I have spent my whole adult life checking off mental lists in my head or planning for 5-30 years in the future. For right now, I have so many unknowns about the future, all I let myself think about is today. I can get bogged down with anxiety about how terrible Rituximab will make me feel or how susceptible I will be to infectious disease when I wipe out my B cells or what if it doesn't work and I relapse again. No. I shut those thoughts down and give it up to God.

We can plan and plan and plan in this life, but there are so many things that are out of our control. But what I choose to control is how I feel right now at this moment, and I choose joy and contentment over anxiety and fear.

#raisingseven #momblogger #catholicmom #catholic #catholicblogger #encephalitis #autoimmuneencephalitis #ichoosejoy #contentment #womeninmedicine #physicianassistant #raising7 #chemotherapy #Encephalitissucks

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