On May 7th of this year I met with my oncologist. He told me I am stable. Which I think is “doctor speak” without throwing around the “r” word (remission). I’m still stuck on kepra (I was told after six months I could come off it, so I just stopped taking it, and after three missed pills I had another seizure). I went to see a neurologist, and he said I likely have permanent brain damage from the brain surgery, so I not only have to continue to take it indefinitely, but increased it by 250mg a pill so I have some cushion room should I miss a pill.
I’m still not quite sure what to do with myself. I feel like a walking miracle. Somehow I beat a deadly diagnosis, yet I am still looking over my shoulder for it to come back. I don’t understand why I am still here, and so many people are not. I’m excited and terrified, all at the same time. I really hope this feeling goes away, as it is eating away at my relationships.
I know I need counseling. But for the particular type of trauma I’ve been through I need someone whose specialty is cancer survivorship. And guess whose insurance doesn’t cover that sort of specialist? This girl. So I guess I have another epic battle ahead of me trying to get the emotional support I so desperately need.
Just after i turned 38 (i turned 39 this January) I was with my husband and three kids, visiting family in San Diego. I was also 24 weeks pregnant. I remember our first day there. We took the kids to the children’s museum. But that’s most of what I remember. I remember being too sick to take my kids to Disneyland like I had promised. It broke my heart (still does). I went to two different urgent cares, who both blew me off as having nausea related to the pregnancy. After two weeks, we headed home. I remember throwing up a few minutes before we made it home. At home I was still sick. After a few days, I fell. A few days later, I fell again. This time my husband rushed me to the ER where they found a massive brain tumor.
I had a brain resection a few days later. The surgeon couldn’t use contrast because I was pregnant, so he did the best he could blindly. As it turns out, I was released after only two weeks. No shunt, no anything. I got a new OB that specialized in high risk pregnancy (I had a midwife prior). I went to outpatient PT, but it seemed silly, because I was fine. Just before my scheduled C-section so I could have treatment, I started to have symptoms again.
So I was scanned again, and they saw that the tumor had grown back. My baby was delivered at 34 weeks under general anesthesia. I don’t remember him being born. I don’t remember much of his life until a few months ago. But after he was born I could have contrast. I had a second brain resection. This one took seven hours, and they lost cotton on my head. My guess is the nurse in charge of keeping track of the cotton got in a lot of trouble for that snafu, as they never found it.
As it turned out through all of this, I had stage 4 metastatic melanoma. I not only had the large brain tumor, I also had mets in my pelvis, lungs, back and head. But this time, the surgeon got it all.
Next came immunotherapy. I had four rounds of two types of drugs – ippilumibad and opdivo. And this is where things went super sideways. I did fine for the first three rounds, but that fourth one gave me side effects no one saw coming. I got encephalitis, enteritis, a seizure because of the enteritis. I was hospitalized three times for side effects.
Since early November, I haven’t been in the hospital. I was set to come off kepra for the seizure, but no one told me I had to taper, so after three missed pills I had another seizure. I’ve been on super high dose steroids since this all started. I had a test by endocrinology to see if my body could make its own cortisol again after a loooong taper (which it can), but my doctor won’t let me stop the steroids until my follow up in a few weeks.
I was given a deadly diagnosis. But due to some amazing people who participated in clinical trials for ippilumibad, I’m still here over a year later. As of two weeks ago, my scans were still clear. The PA for my oncologist says I’m a walking miracle.
My family never would have survived without the help of my church and my mom. My mom basically lived with us for the past year and my church provided meals when I couldn’t do simple things like cooking. I finally seem to be close to the other side of all this. I really, really hope so. Because to go back to life without medication. Without scans. Without doctor visits every three weeks. It would be so amazing.
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