Craniopharyngioma in Public

For those of you who are still checking in here but we aren’t Facebook friends (do I even have readers who aren’t Facebook friends?) here’s my update.

About 5 weeks ago I started having really bad headaches and my vision would go all wonky (tunnel vision, black spots). I called my PCP (ex-PCP as of today) and she prescribed me pain pills and suggested I get a CT. I scheduled the CT but the pain pills weren’t working and she couldn’t figure out how to listen to the pharmacist on how to order stronger meds that were available (it was Memorial day weekend). The pain got so bad that on the Sunday before Memorial Day I took myself to the ER. They did a CT scan and found what they thought was a cyst in my 3rd ventricle.

I was taken by ambulance to the hospital (our local ER isn’t attached to one but is in the same health care system). At the hospital (run by Cleveland Clinic) they did an MRI and admitted me to the ICU. Apparently, what the ER doc thought was a cyst was in fact a largish CPG, sitting on my pituitary gland, optic nerve, and hypothalamus. It was blocking movement of my CSF and was creating a lot of pressure on my brain. I was scheduled for surgery on the 27th.

The neurosurgeons decided not to do a craniotomy and instead they went in transsphenoidally (through my right nostril). They drained the cyst, removed the tumor (and my pituitary gland and stalk), and put in a lumbar drain and I stayed on the ICU for 9 days. Liam was allowed to visit the day before and the day after surgery and that was it. My parents, sister, and nephews all made it to FL on Memorial Day but no one was allowed to visit me, due to COVID.

I was discharged on June 5th with several new medical issues. I have panhypopituitarism (which means I don’t produce any hormones at all, including cortisol which is apparently super important), diabetes insipidus (not related to the other diabetes, this one is about controlling fluid intake and output), hypothyroidism and high blood pressure. I’m also not sleeping great, super stuffed up from the procedure to remove the tumor, and most of my right eye peripheral vision is.... blurry.

I don’t do well with screens (tv, laptop, cellphone) but I am getting better with those. I can do some short spurt reading on my Kindle. Talking on the phone is okay but I need to use the speaker as the noise right next to my head is horrendously painful. I’ve been on serious restrictions regarding blowing my nose, coughing, bending over, lifting anything over 10 lbs, going up and down the stairs, getting up or sitting down… basically anything that puts pressure on my brain. I had about 6 days where I leaked from my nose, we think it was CSF but we aren’t sure.

I’ve been struggling emotionally, too. I was a relatively healthy, independent, woman before those dang headaches. The doctors think this tumor could have been slowly growing for decades and likely is the reason I couldn’t get pregnant. So I probably had my hysterectomy for no good reason. However, the lack of hormone production due to the hysterectomy is probably why the tumor grew like it did in the last 18 months. This kind of tumor is found in women that are post-menopausal or girls that are just entering puberty.

I find myself dozing off like a narcoleptic and sometimes I forget what I was going to say. I also have trouble catching my breath.

I just keep telling myself that I’m lucky to be alive (because I really am, how the tumor was sitting could have killed me) and that there is something to be learned from all of this. That I know that God has me and He’s got a reason for this tumor. I don’t know what that reason is. My uncle (godfather too) said that “sometimes His tests are hard” and I thought…yeah, I know, I’ve read Job.

I’m so frustrated and I get angry quickly. Good thing I’m still in therapy.