CNS Lymphoma Survivor

CNS Lymphoma Survivor

In January 2017, I notice my husband was having trouble seeing or operating an iPad. We were planning a trip to Puerto Vallarta to watch our daughter’s college softball team play in a tournament. In February we went on the trip and he was ok but there were signs of unusual tiredness that I had not seen before. A week later he woke up at 2:30am grabbing his back and standing on one leg barely able to speak. He was able to get to the car and we went to the closest ER. They
checked him out and could not find anything wrong. Eight hours later he still was not feeling well so we went to the ER of our insurance provider. Again he was checked out and sent home. On Monday he went to work and called me in meltdown so we called the doctors office for an urgent appointment. They suggested Prozac and some time off work. This is not his normal personality. He has always been positive, happy and loved people.

On his second week of work leave, he told me he would visit his chiropractor at 7:00am. I was about to walk out the door when the phone rang . It was the chiropractor and he said my husband walked in and began speaking gibberish. I could here him in the background and asked him to call 911. My husband continued the gibberish for 15 minutes when the paramedics began to check him out and I finally arrived.

When we arrived st the closest ER, they did a CT Scan and MRI and notice some very small lesions in his brain. Once he was stable our insurance required we move to our home hospital. We spent the next four days getting many tests done to see if it was a heart attack, a stroke or TIA. Were told before checkout that if he was a 30 year old woman it could be MS. They could not rule out neurocystic sarcosis. We left the hospital without a diagnosis. Wait and see.

The next week we saw his PCP for follow up and his back was still causing pain. He started dragging his right foot which alerted our physician to call the neurologist. Another MRI was done that day to show the lesions(3) had grown a mm from 4 to 5. The next day we went to ER to start on decadron. On the way home the seizures stated again. We spent another several days in the hospital and he could not walk unassisted. Before we left he could as one doctor convince him it was mind over matter. She was amazing.

We continued the route of multiple hospital visits and doctors visits without a diagnosis until July fourth. He needed a brain biopsy but the risk outweighed the benefits.until when weening off of the steroids it became clear that the benefits outweighed the risk.

The craniotomy was a success. He was diagnosed with Primary Large B Cell Lymphoma of the central nervous system. OMG what mouth full!

Once he was stable we took him home to rest but it would be a challenge with incontence, to many seizure medications and mobility and balance issues. Our adult kids and I kept him moving as well as bi-weekly physical and speech therapy at home.

Chemo started a month after surgery. Eight rounds scheduled of methotrexate and rutuxan. If he could survive that he would go to get carmustine and stem cell transplant rescue at the City of Hope.

The next nine months were a challenge but with lots of family and friends love and support we all got through this. We had wonderful doctors and nurse that took care of him and put up with angry burst and loving apologies. A great sense of humor and a winning attitude. We are cancer free for eighteen months and take every day as a gift. We pray daily and thank god that he returned to work three months after stem cell transplant. He was able to sing at our sons wedding a year later. We hope this story can give you hope for recovery. God bless! As a fellow survivor of Lymphoma wrote I. In his book title ‘The sun is up, I am vertical, it’s a good day!’

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