Tag: treatment

Wow It has been 4 Months Since I’ve written!

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

Chemo is done and the party still hasn’t started

My last day of chemo was June 9th, 2021. It was a day I looked forward to for a long time. I thought for sure that it would be the beginning of everything being all right again. I thought I would feel different. I thought the sun would immediately shine brighter and the birds would sing louder and all would be right with the world. I even thought that somehow the last chemo session would be easier, just by knowing that it was the last one for awhile.

To tell you the truth, I could not have been more wrong. For one, the last chemo was no less intense and grueling than all the others. In fact, it was worse than the others because the cumulative side effects somehow intensified and lasted longer. I didn’t feel better immediately either. Surprise surprise. I was still tired all the time. I still had fatigue. I was still swollen. My gi tract still didn’t work and I bloated like a nine month pregnant woman every time I ate to the point that I could hardly breathe. I couldn’t push a grocery cart by myself without getting so winded that I had to stop and rest. I had ptsd every time I had the slightest twinge, wondering if this time the symptoms meant something like they did last time. The sympathetic head tilt looks didn’t instantly stop after chemo was done because I was still bald, which was a visual hallmark of continued illness. I had multiple organs try to fail, some still are trying, from chemo side effects, which brought on many more complications. On top of all that, I was struggling, and still am, to rescue my business from everything that had happened during the pandemic and when I was actively sick. It was all crushingly disappointing.

I think the biggest problem is that I wasn’t mentally prepared for any of this. I just wasn’t expecting it. My logical self should have assumed that it was impossible for everything to right itself immediately. However, my chemo patient self was ready for any cheerful fantasy to be true instead. I had a lot of help with this misconception. At my last chemo appointment and doctor’s visit, everyone acted like a huge celebratory gong was to be rung and that it would be all smooth sailing from there. Congratulations flowed all around, uplifting my mood. I can remember stumbling to my car and suddenly breaking down into tears of joy as We Are The Champions came on the radio. I understand the focus of that final visit was to rejoice, but I think it would have been helpful to have a small dose of realism injected in at the same time. I am not talking about not celebrating. I am just talking about balancing the good end of treatment news with some tips about potential complications, what to expect, and how to realistically move forward. I think it would have saved me a lot of frustration and disappointment. I understand so much better now from experience and I have definitely had success in making my way post chemo and I am very grateful for how I am doing now, but I feel like the journey could have been a little less scary with some prior warning.

Dr. Katz

I just don’t know how to feel.

So, as I understand it, the end is near for my cancer treatments. This week is supposed to be the week. The last chemo. Wow. Just to say it out loud is really something. It doesn’t even seem real. Could it really be true? Of course, when I speak in terms of the end, it is not really the end. The next five years of my life are pretty well mapped out with follow ups and scans and appointments. It is really at the end of those five years that it is really “over,” not just at the end of chemo. There will always be that little forever shadow monkey on my back that things could take a turn for the ridiculous again.

I would be lying if I said that I am not excited about the prospect of chemo being over. But, weirdly, at the same time, I am a bit terrified as well. No more chemo?! While that means, hopefully, no more of the awful side effects after they all wear off. It also means no more internal liquid defense system. It also means that there could be more opportunities for the cancer to creep back into my life. Hmm. How will I know if it is coming back? In the interest of respecting the post traumatic stress aspect of being a survivor, I made a promise to myself not to panic at every little twinge or symptom that I experience after treatment is over, but should I? Or should I be hypervigilant? I don’t really know the right answer.

I am looking forward to feeling like myself again, to having stamina, to being able to exercise, to being able to have hair again (hopefully completely different and thick and amazing), and to feel, dare it say it, sexy again. But, I hear that that is going to be an additional wait as well. I have been told that it can take up to six months before patients feel back to baseline. This kind of statistic just makes me anxious because I suspect that it will be a natural tendency for everyone, including myself, to expect me to pick up right where I left off before treatment as far as work and life in general. I have a gift for putting extra pressure on myself and I am sure this will be no different. Well, at least I am consistent in that regard…lol

Basically what I am saying is that I am kind of all over the place right now. I have no idea how to feel. Part of me is ready to throw caution to the wind and literally have a party( socially distant of course) to celebrate the end of this chapter. The other part of me realizes that there is a whole lot of other stuff to consider before the party can begin.

Dr. Katz