Q&A

How does it affect you right now? Do you have symptoms?

I have varying degrees of a continuous headache. Sometimes it's barely noticeable, but sometimes I have to take a low level narcotic to function. There's no specific reason for the severity changes. Other than the headaches, I have no other physical effects from it. Can I blame my occasional diarrhea mouth on it? Unfortunately, no.

 

Do they know how/why it forms?

I'm not a medical expert but here is what I've learned (mostly from medical friends or my neurosurgeons, not dr google). There are different types of cells in the brain. One of the main categories is Glial cells, hence the name Glioma. Tumors grow out of a specific type of cell within that category. The reason for their abnormal growth is unknown. From the location of my tumor, the surgeons can say that it is from astrocytes or oligodendrocytes (say that 3 times fast). Prognosis depends on the stage and make up of the tumor. It could be an astrocytoma, oligodendrocytoma, or a stage 4 astrocytoma called glioblastoma. As you can infer from the name that has blast in it, we don't want it to be the third.

What type of glioma is it? What is your prognosis?

We won't know that answer until pathology gets back to us about 2 weeks after surgery. The type and stage will dictate our next decision about follow up treatment. We do know that on a spectrum of grades from 1 to 4, mine is most likely a 2 or a 3. We do know my young age and good health are working in my favor. We can't go to google or medical journals for typical median or avg prognosis because that includes everyone from children to geriatric patients.

Are your employers being accommodating?

Our employers are both being extremely accommodating! Charles has the benefit of working from home as long as he needs to. This is so valuable to us. With the nanny only here for 32 hours a week, it would cut out 8-10 hours of that time with just his commute. He does have a bank of leave built up to take off the first full week and then fill in those 8 hours a week on top of the 32.

My company has been amazing. I started working there in 2006. I took a full time mommy break with occasional part time temporary stints between 2008 and 2012. I just recently started back there full time in February of this year. So with my short full time status, I used what paid time off I had during my medical testing and visits last week. The company is being very understanding when I need to take unpaid time off. They have an awesome short term disability benefit (along with long term, should I need it). The STD doesn't kick in for 30 days after my last day worked, but my coworkers are being extremely generous, donating grocery gift cards, time from their own PTO banks, money, and signing up for needs on our care calendar. I can't believe how incredibly blessed I am to have a job that I love to do and so many amazing friends where I work.

How much do the kids know?

They are aware of what's going on. They can pick up on our energy. (English peeps, excuse my use of they and them for a singular person). Last night at dinner, we explained that when someone is sick, they go to the doctor to get better. Sometimes when someone is VERY sick, they have to go to the hospital for a long time so the doctors can help them get better. Mommy is very sick and needs to go away for a few days next week so the doctors can help her feel better. Grace, remember when you had your tonsils taken out because they were too big? Mommy has something in her head that is too big and needs to be taken out. But she'll come back to you soon. When she comes home, you'll need to be gentle with her and sometimes you'll need to be quiet so she can sleep to feel better.

Even Ellie understands. Last night at bedtime, she said "Mommy go a doctor? (Yes) Ellie a Liam a Gacie go a doctor too. (No, just Mommy.) Just Mommy go a doctor, ok. (Grandma and Uncle Saven will come take care of you.) Unca Saven? Yay! A Zoe? (Yes) Yay!"

If you come visit or care for the kids, please don't talk about anything higher than this either to or in front of them. Even if you're talking to another adult or on the phone, they ARE listen and they will understand you. We don't want to worry them too much. They have enough changes coming anyway.