Tag: brain cancer

I’m coming up on my two year anniversary and I am nervous.

Ok, so, on June 3rd of this year, it will be two years since I was discharged from the hospital after my stem cell transplant for my second cancer. This is about how far I got when I thought I was in the clear from my first cancer, so I am nervous. I just have to make it beyond this point to be able to believe that my cancer free status will stick,

I decided to go big with the second one…brain cancer! Primary CNS lymphoma. Thank the lord it was a treatable one, but still scary and awful nonetheless. I thought to myself at the time what the heck? Two cancers in four years! Something had to be messed up in my baseline so I thought a do over was what was needed. I have to admit I didn’t fully understand what a grueling and terrifying process that was going to be. Let me explain. First, they have to determine that your cancer is fully treated and in remission. That in and of itself is not easy task with months and months of inpatient chemo. Then, you get not long enough of a break before launching into the stem cell process.

The stem cell process needs to be done within a certain time window as to not allow the freshly treated cancer to return. You need to first inject yourself with what’s called granulocyte colony stimulating factor to get you white blood cells/stem cells to rocket themselves into the millions! Then, you have a triple lumen inserted into your chest that you get to mess around with for a long time to make the harvesting process easier. Then you spend the majority of a day getting harvested through that port. It’s kind of like a reverse plasma pheresis machine that is drawing them out of you for hours. I think I broke records that day with how many I was able to donate to myself and how quickly they came out. I think I was only there for about six hours as opposed to the normal 8 or 10 or 12. I think I overshot the donation mark by several million.

Then, you get another little break and then it’s into the hospital you go. You have to stay anywhere from ten days to a full month. Here is where the real danger begins. The goal of this hospitalization is to blast you with chemo until your white cell numbers are so low that they need to be manually counted! This kind of chemo is so fierce it will have you having crazy diarrhea and nausea and having to shower ever two hours so your skin does not peel off. It is real cannon ball type stuff. It drops your hemoglobin and platelets down to transfusion levels as well. Then, here is where the timing gets really tricky. They need to plan your antibiotics actually BEFORE your immune system bottoms out entirely. Otherwise, you start getting all those terrible infections that a normal immune system would fight against.

Unfortunately, I was not so lucky. My antibiotics were started a little late in my opinion and I got three different infections. I was septic, somewhat out of my head. I had a fever. I had rigors, which are the kind of shakes that literally make it hard to talk or move or do anything. They are very scary. You have to do some really strong narcotics to even make a dent in them. Also, when you have all those infections, you are not allowed to leave your room to do the walking necessary to further stimulate your immune system to take the new cells and regenerate. You are kind of defeated at both ends. That just added to the frustration and fear because I was very motivated to help myself in my own recovery and that got in the way of that.

But, even so, I was able to get out of that hospital in ten days anyway! I think it was a combination of all the prayers, baseline decent health, and force of my own inner strength. I am so so grateful for all of that. There is a part of me to this day that would like to be a part of educating the hospital staff further so something like this doesn’t happened to someone else. Unfortunately, no one was up for that education so those attempts went nowhere.

Overall, I am extremely grateful to even be alive to be writing this for you. There is nothing better than getting to open your eyes in your own bed next to your husband and hanging out with your kids and pets. Nothing. I already had a great appreciation for everything around me but now it is magnified even further. So, my final thoughts are to concentrate on my upcoming anniversary with as little fear as possible,and try to embrace all my future possibilities. Cheers to everyone’s good health and embracing what you have!

Have a great day and a Happy Easter!

Dr. Katz

Cancer Awareness Months

There are many different cancer awareness months with focused awareness on certain cancers. January is cervical cancer awareness month. February is Nation Cancer Prevention Month and Gallbladder and Bile Duct Cancer awareness month. March is Colorectal Cancer awareness month and Multiple Myeloma Awareness month. April is Esophageal, Head and Neck Cancer and Testicular Cancer Awareness month. May is National Cancer Research Month, May is also Bladder Cancer, Melanoma, Brain, and Skin Cancer Awareness month. June is National Cancer Survivor Month. July is Sarcoma and Bone Cancer Awareness month. August is Appendix Cancer Awareness month. September covers a lot of cancer awareness. It is Childhood Cancer, Leukemia, Lymphoma, Ovarian, Prostate, and Thyroid Cancer Awareness month. October is Breast and Liver Cancer Awareness month. November is Neuroendocrine Tumors, Gastric, Lung, and Pancreatic Cancer Awareness month. Somehow December is not any kind of cancer awareness month.

These are all well and good and should be acknowledged. As a two-time cancer warrior, I guess I would fall into the May and September category, having had lymphoma and brain cancer. Whenever I see postings about these months, I try to educate people and patients about the particular cancer that the month concentrates on. Still, I believe that there are so many additional unmentioned cancers that also deserve attention. I realize while saying this that it would be impossible to list them all. I get that. I guess what I am really trying to say is that cancer is something that we should remain vigilant for and attempt to screen for and diagnosis every single day, not just for a month or a day or a year.

As patient I realize that my particular battles and surveillance will never ever really be over for good. I will always have to be vigilant and follow up. This is why I even stay away from the word survivor because it implies a kind of finality that I don’t really think I have the luxury or confidence to truly embrace. That is ok. I am so happy just to still exist that the lifetime of surveillance does not trouble me. I plan to be in it for the long haul and whatever I have to do to help make that happen, I am in!

Digest these thoughts for a bit and have an amazing and grateful day!

Dr. Katz

They say my personality has changed

I am told as of late that my personality has changed. I have become more irritable, a little shorter in temper, and I tend to say what needs to be said whether someone is ready to hear it or not.

I have a few different theories on why this is happening. Before I go on, I want to make it clear that I am making active strides not to evolve into a butthole in therapy as well. Just wanted you to know. Theory number one is that I battled not one but two cancers in the last three years. The most recent one was brain cancer for chrissake. Literally at one point in time not more than a year ago my brain was over half overtaken by tumor and swelling. I have to believe that that leaves some long-term changes behind, despite how far I have come from that point. I did a hell of lot of hard work, perserverence, suffering, and fear-battling in addition to battling the cancers. I was at everyone else’s mercy at any one point in time. A girl gets impatient with even the littler things after awhile because you just want something to go your way at some point. Things get out of proportion.

In terms of my second theory, I got put on Keppra for the intense seizure activity and I am still on it. Well I am here to tell ya the list of side effects from Keppra are like a mile long and a ton of them are psychological like depression, anxiety, and irritability. The term Keppra rage has been quoted to me by multiple patients. Ok, I am willing to admit that this could be a factor as well and I am hoping that my upcoming EEG will reveal that maybe I can start weaning off it since the reason I was put on it in the first place is not really valid anymore. Fingers crossed but no worries. I am not about to do anything stupid that would result in me not being able to drive or do anything for myself.

My third theory is that just maybe I have finally gotten old enough and have been through enough that I have lost the infinite patience I used to have for BS and crap. I just don’t feel like i have the time to deal with it anymore. This is not me saying I have decided to stop listening anymore. Absolutely not. I also realize that everyone’s perception of what is truly painful or impactful is very different. I know I have to allow for that variation.

The bottom line is I may in fact be a little crabbier and a little less tolerant, but I think it is all explainable. I am trying my best to remain myself and spread as much positivity, empowerment, and good into the world as I can. I can promise you I will faithfully keep up these efforts. Just bare with me for now if you could. I appreciate it.

Dr. Katz

At least I had a tangible enemy

Ok brace yourself. I am going to say something that is initially going to sound a little crazy, but just bear with me. I actually consider myself lucky that cancer was my battle to fight. I know a ton of people right now going through things with as yet discovered causes and no specific direction or plan. It is an awful way to exist. The discomfort, the suffering, the lack of answers, the whole nine yards. The fear of the unknown is a real thing. I think it literally is an impediment to healing.

I am hear to tell ya, that my cancer was no picnic. To say that I am lucky sounds ridiculous to say. I get it that I am not lucky that I had cancer, twice in two years. Yes I know. What I mean to say more purposefully is that at least my demon was described and known and right in front of me, allowing me to have a definite target to tackle. It was terrifying for sure, but at least I had the privilege of knowing what I was fighting. It intensified my focus and enhanced my hope that there might be an end to the tunnel. Everybody I know right now that is battling does not have a set enemy in sight and no specific plan. Bottom line, I am sending out the discovery and healing vibes out to everyone I know that is battling right now. I am here if you need me. I am here to help strategize. I am here to help if you want me to.

Dr. Katz

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