My last post was actually in january 2024, fresh into the throws of my recent primary CNS Lymphoma diagnosis with a brain filled with tumor, mush, and swelling to the point of almost being unrecognizable as a brain by the time I had my brain surgery to get a cell sample. Fortunately, I was in the right place at the right time because I started crumpling like a piece of paper. It was like everything was spiraling out of control very fast. Suddenly I didn’t know my name or where i was or my birthdate. I just sadly shook my head at the neurosurgery check in lady. Thank goodness my husband was with me. He helped fill in the gaps. I underwent my brain surgery and slipped into an encephalopathic coma complete with seizure, swelling and the whole nine yards. My poor husband had to watch all this develop right before his eyes. He stayed with me the whole time I was in the coma, holding my hand, singing to me, trying to reach the me inside unconscious me any way he could. He didn’t give up! He kept telling everybody that they just didn’t understand. This was the fiercest, most beautiful brain they had ever seen and they had to save it!

Well, thank goodness we got there when we did. Once we started treating my seizures and started decreasing my swelling with steroids, voila I woke up days later! Awesome! However I am told that I was not exactly me but more of a smiling simpleton, picking at my brain surgery incisions. Oh for heaven sake. Things continued to improve in the icu and then I got to be transferred to rehab to relearn how to walk with balance properly ( Dang that brain is in charge of a lot).

Then after I finished rehab it was time to get a picc then a port placed and get the chemo started! This still didn’t happen until January but I was grateful it was happening at all. Now fast forward to May now. Weekly high intense chemo cycles for a total of 8 cycles, plus oral chemo. week in the hospital at a time. You see the particular chemo I was getting this time had to be cleared enough out of the body for me to go home without exposing somebody. Yikes.

Now the 8 cycles are over and my brain looks like a real brain again and I actually feel fully functional mental status wise but still get exhausted. I am so grateful just to be able to open my eyes in the morning. I was ready to be done with all this but the thing is, you are never really all the way done. I still have follow up to do for my first cancer and I always will but I am down with that! Let’s keep vigilant! Let’s keep paying attention. Let’s keep self-advocating.

The real truth of the matter is that I have had two totally different lymphomas in 3 years. That is not ok and a brisk pace to keep up. Would I keep doing it if I had to? Hell ya, I got too much to live for. But if there is an option out there that would possibly give me more time off cancer? Yes there is. This is the stem cell transplant I was talking about. First steps are shooting yourself full of granulocyte colony stimulating factors to make your lymph and bone marrow cells multiple like an army within! Thats a lot of hard work creating your own army. There are significant aches and pains involved, but I got through it. When the day came to retrieve the stem cells, I broke a record. The process was supposed to take like 8 hours and generate 3 or 4 million cells. Well it took me like 4 hours and I kicked out 11 million. They actually had to stop me early! WOW!

Now you take a few days off to rest and get admitted back to the hospital for cannon ball marrow ablating chemo for 8 straight days to zap you down to nothing. Rest again and put the health stem cells back. Let’s hope this works! I’ll let ya know.

Be well

Dr. Katz