Month: May 2024

OMG I might get to go home in 2 or 3 days

As you all know I am plodding and racing at the same time to complete my stem cell journey hospital stay portion. I have been putting my steps in, keeping mobile. Gobbling all the antibiotics for all the infections. Trying to stay moving as my hemoglobin drops in over half. Having diarrhea all the time. Trying to croak just days before. A lot has turned around in a fast pace (if you can call a whole month in the hospital fast). This is girl is super grateful and happy to be alive. That Is the main glowing thought on my brain right now. I am filled with happiness and hope. I can swallow and sort of taste food again. All wins.

Naturally my family is nervous about me coming home. They don’t want me to rush. I tell them not to worry. That is definitely not what is going on here. There has been no rushing. I have no great impetus to hurry home in a rushed fashion. Of course I would love to go home…when it’s safe. I told them we have to trust that my doctors aren’t just trying to get rid of me. We are trying to strike that fine line of compromise and safety. If it ends being earlier than we thought, sounds like a win to me for all mine and their hard work. We have spent too much time with being scared. Now is the time for cautious optimism not fear. We have come too far. The doctors believe in me. My family can believe in me too. I know they can. Cheers to the thought of going home and beginning the next part of the adventure!

Dr. Katz

So people have been asking lately why I stopped delivering babies

Oh wow. This is a big deal question. Delivering babies was some of the most amazing, interesting, joyous, spontaneous, unique 25 years of my life. I loved doing it and still do. I was not one of those that ever rushed a patient because I had theater tickets. I realized that ob was not really a scheduled event. I can’t think of nearly anything else with that much infinite variety in terms of timing, experience and literally everything else. I knew before going in what the schedule would be like….tons of hours…missing outside stuff that was previously scheduled….sleepless nights….wrestling out of bed at 3 am to make a 30 second decision. You get what I’m saying. Some may call it gruelling. I called it fantastic. I knew what I was getting into and I wanted to be there.

I always made sure to make every experience special. Sometimes we sang. Sometimes we played music. Sometimes we laughed babies out. Sometimes I was in fact pulling women off the proverbial ceiling to regain back control and help them have an experience that they could look back on with joy and not regret.

I tried hard to remind patients not to stick to the strict birth plans because they were just a set up for disappointment. This is not me saying I didn’t think patient should have control over their own situations. Absolutely not. I am just saying that the labor and delivery experience is nothing if not a wild ride and if you go into it expecting something else, you will just make it tougher on yourself. There is nothing worse than setting yourself up for disappointment that a plan did not go a certain way and then that can potentially take away from your baby joy. Nope. I don’t recommend it.

I also was a big fan of the more natural experience. My goal was to be as hands off as was safe and let mom and baby guide the way. I was not the tons of ivs and epidurals and drugs for every patient. I had plenty of patients who had none of that and it was ok. Obviously if safety situations changed things could change as needed.

So, now that I have said all that, why would I stop doing it? It makes no sense right? It doesn’t sound like it does. Unfortunately it does makes sense. After my first cancer I lost of lot of that key stamina that’s required to really do a great job at OB. I wasn’t entirely confident that I still could jump up and do my job effectively at 3 am anymore. I just didn’t have the 100% anymore to do it. So, I realized that about myself and decided that if I felt like it was a potential risk to mom or baby, it was not worth still doing it. In OB, life and death things come up in seconds and you have to be ready. I wasn’t sure I could be ready all the time anymore. So, I made the very tough decision to give it up. I do feel sad about it still and I continue to take care of new obs up to 12 weeks in the office to get them started so there is till some interaction there. Bottom line is that if I am ever uncertain that I can do a job to the 110th percent, I won’t do it. Hope that answers everybody’s question.

Dr. Katz

I really gotta concentrate on living right now and getting back home where I belong.

Boy this stem cell is tough. It’s really really tough. I have had to go through some really tough things before but I think this one is at the top of the list. I mean, I was prepared before I got here for this that is was going to be a rough road but sheesh it is exceeding even my pre expectations. I always like to consider myself a really prepared individual but I think it is impossible to completely prepare for something like this. You don’t really know, despite all the words, how it is actually going to be until you start doing it.

Let starts off with the first part. I am affectionately going to refer to it as the cannonball chemo part of the process. This is the part where they give you day after day of marrow ablating chemo to prep you for the process. I guess most people get two drugs. I got three. I guess most people take about 5 days to complete this process. Well I got so much chemo that it ended up being 8 straight days before any “rest time” was upon us. I asked why I got all the extra over the usual crowd. The answer was that they just knew I could handle it because I was so tough. Ummm. Thanks? But eek no thanks at the same time.

Of course. I did it anyway because it was what was recommended. I am one of those patients who tried to tread the line between following all directions and still advocating for myself. It’s a tough line sometimes. Ive noticed over the years that medical professionals are definitely not used to patients that are knowledgeable and engaged. Sometimes I feel like they see that as a threat and that they are just being inappropriately judged and questioned. Well that is definitely not the case in my case but it hurts my heart a little to think that maybe some medical professionals are not confident enough in the treatment they are giving to be threatened by questions. Personally I totally dig it when a patient is an active and knowledgeable and engaged team member. This totally makes my day. I wish everyone felt the same way. I think it would help us to better care for patients. It just makes the whole thing go better when you don’t just have a terrified submissive patient that doesn’t totally understands but just goes with what you say. I say this is never a good scenario and it is our job to reinforce to the patient that they, in fact, are the captain of their medical team and in charge of their bodies and their care, It has to be a balance of trust and communication. It is so important.

I get it that there are times when doctors just need to act and tell you what to do, especially in an emergency situation. Me back in December, head full of tumor and mush, suddenly collapsing after not being able to even remember her name or birthday and underwent emergency brain surgery. Scary crap and I get that there wasn’t really a lot of opportunity for my input at that time because I wasn’t even conscious at the time. Thank goodness the doctors took over and convinced my husband to stay put so they could forward with my surgery, get a sample and abruptly begin to halt the seizures and swelling that were going on in my beautiful but tortured brain. Thank God they did or I wouldn’t be here right now. Very grateful for that.

Sorry, back to present times again. I am nearing the point of the end of the inpatient stem cell journey. My counts have already done their plummet. My hemoglobin is down to 7. My platelets are barely measurable and I am super exhaustedI I had a scary time trying to go septic just days ago. Like, we could have been done septic. Yikes.

Well, I am very happy and grateful to report that today is starting in to the final path to the end of my hospital stay. Counts are trying to go back up. I am starting some cell stimulating injections and they say I could go home in as soon as a week. I can’t walk around in the hall anymore because of some opportunistic infections and that is frustrating because i want to be a part of my own recovery. But, it has given me time to sit in my room isolated and have time to write. See? The silver lining is always there if you look hard enough. I always try to maintain my not foolish but productive positive attitude. I really think it helps.

So, here’s to the next few days until i can get home to see my family, my pets, and my friends, and maybe even sleep in my own bed. I know that there will be no parties or large gatherings for months. But I’m doing this now so there can be later. Wish me luck!

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