Tag: patient

You actually listened to me doctor!

This wonderful statement was said to me at a patient appointment the other day. These words both fill me with happiness and joy and sadness at the same time. I am thrilled to hear them, but I find it unsatisfying and somewhat sad that I was the first person to take this patient’s concerns seriously and even bother to address them. This patient had been to so many doctors and desperately attempted to ask so many questions, all for naught. She left every previous physician office with no answers and only more frustrations rather than solutions.

This is NOT how it is supposed to be folks! We are supposed to listen! We are supposed to be invested! We are supposed to love our job enough to do it well and to the fullest of our capability! We are not supposed to just barely show up as if we are forcing ourselves through drudgery or see so many patients in a day that we just file them through like some sort of herd. We need to listen. We need to provide individualized, thorough, compassionate care to every single patient that walks in the door. We need to let go of any preconceived notions that we may have heard elsewhere or told by someone else. We need to let go of any held on judgements based on previous experience. The only person that matters is that patient that walks in the door. Let’s get our crap together people and do the job that we were meant to do.

If you are a patient out there who has felt neglected, frustrated, and not listened to, please reach out until you find a physician that does listen. You are worth it!

Ponder this for a moment and have an amazing day.

Dr. Katz

All these potentially fantastic things are evolving, and still they are overshadowed by my worry about my upcoming scan.

I know what you are thinking. Stop it already! You know that your next scan will likely be ok. You have no symptoms, besides the occasional panicking about something that is actually completely normal if you stretched back into your memory of life before cancers. Remember, regular twinges or the occasional floater in your eye are normal in your 50s! Stop freaking out. These are the kind of daily internal conversations that I have with myself in the month before each and every scan.

To be honest, I have had months of normal scans in a row so far. I went the extra thousand miles and had the stem cell transplant on top of everything. That is supposed to provide the possiblity of 30 years cancer free. That is really amazing and tantalizing to think about.

But, still, the pattern of worry continues. It doesn’t seem to really get to me until the month before the scan. This next one is coming up on Feb 19th so yep, I am smack in the middle of the month before.
If I take a step back, which I make myself do daily, I remind myself that I am now biking up to 10 miles a day, able to balance on one toe if I wanted to,having no night blindness, and not crashing into windows with my head. I am very likely to be ok…lol But man, I just need to see that scan report to believe that it is true.

All kinds of amazing things are evolving. I have a trip coming up. I have published four books. The last of my huge business debts are fading away. My family is healthy. All good stuff coming up. I am making the conscious choice to try to focus on those things instead. I really am.

The bottom line is, this scan-xiety stuff is for the birds. It is not very nice and it stays with you for years after cancer. It just is what it is. I am doing my best to deal with it and still try to live a full life at the same time, without acting like every single minute could be my last. Living life to the fullest is a good thing. Living life like it could be your last moment ever is kind of harsh. For right now, I am falling somewhere in-between and I keep hoping, and going to therapy, that this too shall pass.

Have a great day guys.

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

No news is good news!

I hear this cheerful sentence from the vet and doctor’s offices all the time. They say it with a smile as if you are supposed to find it amazing and reassuring if you do not hear from them. You are supposed to rejoice at the lack of bad news, or any news whatsoever.

You know what I hear when they say that? I don’t need to take the time to reach out to you personally to let you know that you are ok. I have just saved myself a ton of time in my busy day. Nothing about this statement lets me know that they are actually concerned about me or my pet, or that I can actually be sure that they didn’t miss something and forgot to call? That could happen too ya know. How long do I wait before I know it really is no news is good news? Are we sure after a week, two weeks, a month? See where I am going with this?

You see, at my office we call, or if we can’t get through, we text or leave a message about every darn thing, good, bad, ugly, sideways, or fantastic. That way we almost eliminate the chance of missing anything and the patient or customer has no question in their minds that they are worth our time and investment in their care. So, what if the majority of the calls are just to say that something is normal. Awesome! Then you are also making sure that you are giving yourself little to no chance of missing the few abnormal or bad news ones. To me it’s a no brainer. Inform everyone about everything. You tend to miss less this way and it shows that you give a crap. Ok diatribe over for now. Have a great day everybody.

Dr. Katz

My patient just told me ” My other doctor said I am just going to have to get used to being fat. She has done everything.”

Umm what? Giving up on your patient? You have done everything? Really? Not according to what I’m seeing. Usually when I dive in and explore the issue, there are all kinds of stones still unturned. The last time I checked, the ONLY circumstance when you might even have a chance of giving up is when someone is dying of terminal cancer within days. Other than that, no excuses. You are still on the line to help. You are a doctor for chrissake.

I am one that tends to never give up myself. That is what I am actually here for, to help and give knowledgeable advice on the issue and how to try to solve it, not just to give up. Mind you, I have rules though. I make it clear to the patient from the beginning that whatever we are working on is a team effort. I make it clear that it will take effort from both of us. I try to empower them to be the captain of their own healthcare team and be an active participant. There will be no randomly missed appointments and non-compliance with reasonable expectations. I have to have at least that for us to work together for your benefit.

I get it, sometimes you have those patients that have hit rock bottom, are ready to quit and give up themselves. But, I am willing to bet that if you look deeply enough, you will be able to discover the reason why and help them get past it and move toward better health. It can be done folks. It really can. You giving up is not an option. I just can’t bear to hear that anymore.

Bottom line, I am right here, ready to listen, ready to problem solve, ready to be a part of your team. C’mon down and lets see what you need! I bet we can come up with something together!

Dr. Katz

Hey there doctors! Guess what? It’s actually a good thing when you have a knowledgeable patient interested in their health care!

It has come to my attention after being a patient A LOT lately, that for some doctors, having a patient who is knowledgeable, dares to ask a question, and is genuinely invested in their own healthcare is some kind of terrifying threat.

Huh? Why? Can anyone tell me why? To me, this makes no sense whatsoever. When I get that patient who asks questions and truly gives a crap about their own health care and wants to be involved, I personally feel like I hit the lottery! I am like O Happy Day! Let’s get you healed and healthier together. Let’s help make you the captain of your own healthcare team. Let’s surge you on to the path to wellness together!

The chances of success in this type of scenario are about a 100 times the chances if it’s not. When you have a patient that is willing to put the work in, is interested enough to ask the questions instead of just blindly following without understanding, that is like striking gold. That is awesome! That is the goal we should be trying to achieve! I just don’t understand why it doesn’t seem to be for most physicians.

But, knowing me. I have a few theories though and I would like to share them with you. Mind you these are just theories and I have no scientific documented proof, but I have had a hell of a lot of experience as a physician and as a patient and this is what I have seen.

I am worried that the physicians that seem so threatened by a patient that asks questions perhaps are just not confident enough in the care or the information that they are providing, or not providing as the case may be.

Well, this should never be the case. Be prepared at all times for questions and clarification. Know your patient so well that you can pre-anticipate what questions might be asked even before they are asked. Actually look at that chart before you enter the room. Anything you are unsure about? Look it up ahead of time and either be ready to talk about it or honestly admit that you don’t know,but are willing to help find someone who does.

It really is that easy sometimes. I get it. Not all conversations are easy. I am just saying that you have to put the pre work in to make things go as well as possible. Sometimes you are giving potentially horrendous news. There is nothing easy about that. It is not the patient’s job to reassure you, it is your job to reassure and support them. This news may make your day a lot tougher emotionally, but it may be changing their entire life all at once. It’s about the patient and your purpose is to help the patient so you gotta just pick up your bootstraps and do it or find another profession.

The bottom line is, I am not one of those threatened by patients being involved or asking questions. I welcome it with full on joy! Bring on them questions!

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