When Jessica Blackwell and her husband, Jeff, eloped in May 2016 and headed for their honeymoon in Mexico, they had many expectations for their trip. Like most newlyweds, they assumed it would be tropical and romantic and that the worst that would happen might be a bad sunburn. What they did not expect was to come home without Jeff’s spleen.
On the last day of their beautiful Mexico honeymoon Jeff had to undergo a splenectomy (surgical procedure to remove the spleen). While this was devastating, shocking and something that you can’t prepare yourself for, what has followed has been equally as shocking and hard to navigate.
After the splenectomy, Jeff received “a fatal cancer misdiagnosis, toxic chemotherapy for that fatal cancer, a pulmonary embolism, an open liver biopsy, 104.5 degree fevers, and six additional aggressive chemotherapies for his actual cancer – a cancer with less than twenty cases in medical history – Hepatosplenic T Cell Lymphoma,” said Jessica.
Since HSTCL is so rare, it meant Jessica and Jeff had to leave their friends and the life they knew behind in Los Angeles and relocate to Houston, TX, where there was a treatment center for Jeff’s rare cancer.
Jessica, who is a comedy writer, found a natural place to document her new life as a caregiver and advocate- she created a blog called Ask Me About My Husband’s Cancer. For anyone who has been a caregiver to a loved one going through cancer treatment, you will find a lot of commonalities in her writing, and a ton of good laughs. She talks about the day-to-day of providing care to her husband at home and at the hospital, the many complications that come with cancer and how she is dealing with the whole situation.
“I started the blog so that when people google hepatosplenic T cell lymphoma (the type of cancer Jeff has) an actual person (or people) would show up,” Jessica told me. “When I first googled it, the info I’d find was old and normally the first lines would be something like, ‘almost uniformly fatal’… and that scared the crap out of me!”
Jessica wouldn’t take that google search as the final answer, so she decided to learn as much as she could about hepatosplenic T cell lymphoma so that she could be Jeff’s best advocate.
“The more digging I did in research papers the more cured cases I found. You just have to dig so hard for them. But those cases were just statistics (‘patient 1’, ‘patient 2’, etc) and they didn’t highlight all of the ups and downs,” Jessica explained.
“I wanted to spare other people the fear of not knowing. Additionally, there isn’t a single treatment used for HSTCL, so it’s up to the doctor. A lot of doctors don’t have experience with HSTCL. People naturally put too much trust in their doctors. I wanted people to find us and ask for our opinions since we’ve made it so far out,” she said.
Jessica’s way of storytelling intertwined with medical information is very rare. It’s easy to follow and surprisingly comforting, especially if you are going through something similar with a loved one. She uses humor to get through the traumatic situation she is in, making clever meme’s and great pop culture references in her blog.
For example, this great meme:
…Or this great tribute to herself after her first year of caregiving: