Friday, January 27, 2017

They Said I Might Have a Brain Tumor...

This fall, I started noticing weird problems with my vision--not so much so that I was super concerned, but enough that I took note.  It was just sorta blurry around the edges of my vision and something was a little off.

"My prescription must be changing," I thought.  "I might need to call for an eye exam."

I was noticing other things too.  I was having really frequent headaches.  I found myself popping ibuprofen most days, sometimes multiple times a day.

"I'm a busy, tired mom who doesn't take good care of myself," I reasoned.  "I just need to get more sleep and drink more water."

But then it was weird stuff like dizziness and pressure changes when I stood up--the world would go sorta dark for a moment.  And I felt pain behind my eyes, in my eye sockets, a lot of the time.

"Do I have sinuses right above my eyes?" I asked Ryan one morning (because obviously a dentist would know this...ha!).  "I feel like I have clogged sinuses right in the back of my eye sockets!"

He sorta shrugged and left for work, probably thinking his wife was insane.  Which I am.  I am definitely a hypochondriac, so I can't take myself too seriously when I have medical concerns, and neither can he.

So I just kind of ignored all of these weird things, but then one afternoon I decided to call the eye doctor about the blurry vision stuff, and when I started describing all of the other symptoms, they said I should come in right away--which honestly surprised me.  And worried me a little.

So I zipped right in there, and sure enough, when the doctor looked in my eyes, it was what he suspected: my optic nerves were extremely swollen.  This can be a sign of two things: Idiopathic Intracranical Hypertension (IIH) or a brain tumor.

He assured me right away that it looked like a textbook case of IIH, which is basically unexplained increased pressure in the skull.  It causes extreme headaches, and it pushes on the optic nerves which causes vision problems, and if it goes untreated, it can cause loss of vision and eventual blindness (horrifying!!).  But it is treatable, and we had caught it early enough that my vision hadn't been compromised.  (See! It pays to be a hypochondriac!)

But since all of the symptoms also mimic a brain tumor, obviously they had to rule that out immediately.  I was scheduled to see a neurologist and set up for an MRI and a spinal tap.  Just a tad overwhelming, particularly for a girl whose mother died of cancer.

I drove home in a tearful blur.  When I pulled into the driveway, the kids were playing outside with Ryan, and Sally ran up to the van calling, "Mommy!  Mommy!" and waving with such delight, and I just lost it.

In my heart, I didn't think I had a brain tumor--but all of the sudden, life just felt so fragile.  I just cried and cried thinking, What if I did have a tumor?  What if I got cancer and had to leave her?  Or what if I lost my vision and couldn't see her anymore?  What if I couldn't see that sweet face and that little dimple and that twinkle in her eye?

Sometimes life just feels heavy.  This year has been heavy.  With my sister's extreme depression (she has been doing Electro Convulsive Therapy since the summer, and it has been so difficult), Katie and Drew's divorce, and now this sudden just felt like, what's next??

The next few weeks were rough.  The MRI was so hard for me with my anxiety--the enclosed space, the loud noises while in the tube, the expectation to lie perfectly still, the fear of what they would find in the scans.  Right when the MRI tech put me in the tube, I actually panicked and asked him to pull me back out so I could take a Xanax.  Not even kidding!  (Remember the Xanax that I didn't take on the airplane to South Africa??  Hahaha!)

Then the spinal tap...NOT comfortable.  These past few years when I have found myself in hospital beds for my various fertility issues, getting poked and prodded, I find myself feeling this resigned sort of patience and humility, but also this sadness and lack of humanity almost.  And I always think of my mom and wonder how on earth she did it for so long.

Fortunately, the scans came back clear--I don't have a brain tumor.  So thankful!!!!  But the IIH isn't a picnic.  They think the pressure in my skull has been building over time for a couple of years.  So it's going to take a while for the pressure to come down with medication.

As grateful as I am for modern medicine, this is a devil drug.  It makes me nauseous and extremely fatigued.  I often fall asleep with Noah at 8:30 p.m. and sleep through the night--for a night owl like me, that is unheard of.  And even after all that sleep, I never feel rested.  I am always so tired.

The medicine also makes me feel anxious and depressed.  I have not been myself lately, which is so hard.  I always struggle with anxiety and depression this time of year, but the medicine has made it even worse.  The months of November and December were a bit of a blur, as I tried to do the holidays, the fundraiser for South Africa, and motherhood/ life while my body adjusted to the drug.

The good news is, they don't think I will have to take it forever.  Despite the crummy medicinal side effects, the condition itself is responding well to the medicine, and the pressure inside my skull seems to be decreasing.  My optic nerves are less swollen, and probably by summer I can try weaning off of it and see if the pressure in my skull stays down.

Unfortunately, we can't try to have another baby for probably another year to make sure that things stay stable (we were hoping to do IVF again this month, but that is obviously on hold indefinitely), so that was super disappointing--but I have sort of become resigned to the fact that family planning  has never and will never be in my control. 

I will be honest and say that I have felt sorry for myself these past few months.  I have felt angry that I have this body that does weird things and is so unpredictable.  I have felt sorry for myself that I have hormone issues and pretty much never feel that good.  It's unclear whether this newest issue is related to my PCOS and endometriosis, but it seems like it all must be connected somehow.

So that was the last big challenge of 2016.  It was a soul-trying year in a lot of ways.  In 2017, I am looking forward to recharging my physical and spiritual health.  I hope the new year brings lots of peace, health, and happiness for me and for those I love.

We got these family pictures taken in Denver when my dad got the extended family photo shoot.  I love seeing my people and realizing that no matter what obstacles we face, we have each other.  Not that things are always butterflies and roses in our home--they aren't.  Motherhood is a challenge for me--it stretches me every single day--and even marriage, which has always been pretty easy for me and Ryan, was difficult this past year with all of the stress of the medical problems and big decisions with his career and such.  But at the end of the day, I love these people fiercely, and they love me.  We are "Team Nielson!" as the kids say.  They are my best friends.

I am beyond grateful for the opportunity that I have to live each day with them, and I continually try to accept the mantra that one of my favorite church leaders used to say: "Come what may, and love it."

Life is good, even when it is hard. 


  1. Beautiful photos! And I'm so glad you don't have a brain tumor. So scary! I hope everything gets better soon and you can stop taking the medicine sooner rather than later!

  2. Wow, sorry the trials never end! Just know how blessed we feel having you for a close friend. Love each day and keep enduring for those who love you. Thanks for sharing the good and the bad. Life is real! We love you, Elizabeth and family

  3. I haven't read blogs in FOREVER... and I'm not sure what led me to glance at my list of friends on my own blog.. but I did and saw yours. And I'm so glad I clicked. I had no idea.. about ANY of this!! And I'm SO SORRY for you! That's traumatic and scary and the side effects sound debilitating. It's incredible that you did that fundraiser on top of normal mom stuff ON TOP of horrible health! You must feel like you're drowning. I so wish I could help. Not to mention how sorry I am about your sister! And Katie and Drew!!! Your poor heart!! Rachel!!! 2017 is bound to bring brighter things! You continue to reach out and bless other people's lives regardless of your trials and THAT is the essence of Rachel.

  4. Oh Rachel! It sounds like stress really is "over taking my body"! ahh! I'm so sorry that you have been feeling so terrible. I am so grateful that you have a solution and that it isn't going to last forever. I love you!

  5. You have a beautiful family Rach. I am so sorry for everything you have been through. That must have been so scary. I hope the medicine continues to work and hopefully you start feeling better. I have been thinking about you. You have always been an inspiration to me to do all that you do for others in spite of such difficult challenges. Love you!

  6. I'm glad you referenced this in your instagram pic because I don't check blogs very often anymore. I am so, so sorry about all of this. I am thankful that you don't have a brain tumor, and that your pressure is able to be treated. I'm sorry about the side effects...and that you have to put off IVF. Please know I am praying for you!

  7. Cancer changes your perspective. The feelings you expressed are normal. Be kind to yourself. It helps me to step back, take a deep breath and see things as they really are not as Fear views them.

  8. I am praying for you and your family. I am so glad you do not have a brain tumor. I am so sorry you had to go through all that. You are an inspiration to many. I am blessed to call you my friend. Take care. I'm only a phone call away

  9. It certainly has been a roller coaster of a year, and my heart has been tender for you as I've watched you trudge through it. So glad there was no tumor, but I wish I could take away your other struggles and worries. You are so brave and strong to share your struggles. You will come out on top of all of this!!!

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