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

Brace yourself, but I really think that my positive attitude had just as much to do with beating cancer as the chemo did.

I have just started reading Kelly A. Turner’s book Radical Remission Surviving Camcer Against All Odds and it is a real thought-provoking, potential life changer. I admit, at first I only picked it up because it kept beating me out on the Amazon rankings…lol. But honestly, now I can’t put it down.

First of all, what the heck is radical remission? Radical remission is defined as any cancer remission that is statistically unexpected. That usually happens in one of three ways: 1) the cancer goes away without any conventional medicine 2) the patient tries conventional medicine, does not achieve remission and switches to alternative methods which do achieve remission 3) the patient uses conventional and alternative methods at the same time and outlives a particular dire prognosis( any cancer with less than 25 percent 5 year survival.

The book describes nine key factors that can make a real difference in healing. They are as follows:

Radically changing your diet

Taking control of your health

Following your intuition

Using herbs and supplements

Releasing suppressed emotions

Increasing Poaitive emotions

Embracing social support

Deepening your spiritual connection

Having strong reasons for living

I know. You are looking at this list going sure, whatever right? I did too, but then I kept on reading. This list did not come out of nowhere. Dr Turner spents ten months researching cases of radical remission all over the world and got their stories. She spoke to alternative healers and got their prospective on cancer. These were the nine key factors that played a role in all of their stories. I found myself thinking, this all sounds good, but how often does this really happen? Believe it or not, it happens more often than you think. There are a ton of cases just in her book alone. I think that we just don’t hear about them because a lot of physicians don’t want to raise false hope in their patients. I think this is the absolutely wrong approach and I also think that false hope is the wrong term amd not applicable here. The term false hope implies getting someone excited about something that is not possible and thus wasting their energies that could be directed elsewhere. Well hello! Radical remission is possible!

Of course, the book goes on to explain each factor in detail with examples. These are particularly fascinating as well, but beyond the scope of this blog. You jist need to get the book and check it out to be honest.

The element that impacted me the most was the common theme of being an active participant in directing your own health and paying attention to your body. You know the phrase ” gut feeling” or ” gut intuition?” There is really something to that.. Did you know that your gut/intestinal tract has its own nervous system that can respond to stimuli independently of the rest of your body? So when someone says that they have a feeling in the pit of their stomach, it’s a real thing! Listen to it! This is a concept that I have been emphasizing to patients for years. I am always encouraging patients to take control of their health and find ways to be positive and listen to their bodies. This is not me saying to fly in the face of anything your doctor tells you. I’m saying to find a balance between listening to your body, your physicians and your healers. I truly think that’s how I helped find my cancer and beat it. I not sure that I would have been brave/ foolish( I don’t know which is correct) to abandon all conventional therapy and attempt to heal myself like a lot of the patients in the book, but it is nonetheless empowering to hear that it is possible.

Dr. Katz

So, I kind of broke up an almost fight at Kroger today

Hey everyone! Long time no write. LIfe has been a crazy series up downs…and downs…lately and my time and mind have been elsewhere out of necessity. But today, something happened that I think is worth sharing so here goes.

I was in line at Kroger today and I slid in right behind this very frustrated guy who was about to have a verbal duke out with the poor blameless cashier, who appeared to already be having a very difficult day. I observed quietly for a second, and then I felt compelled to intervene. I realize that this is a risky move, especially nowadays but I went for it anyway. I was going to bring some peace to Kroger dang it. I said, ” You know, I think we have all forgotten how to be kind. We have all gotten so frustrated with other stuff and other people that we forget how to be nice to others. ” This stunned them into angry silence for a minute. I boldly went on. “When I had my cancer this year and then my husband had emergency heart surgery soon after I was done with chemo, I realized that there are some battles I just don’t need to fight anymore. I just feel lucky to be above ground. Everything after that is just gravy.” Both men got even quieter and just stared at me. I wasn’t really sure what was going to happen. Then, the fighting man asked if he could help me get the stuff from under my cart. I said, “Absolutely! Thanks!” He did. Then he turned to the cashier and said thanks and then went on his way. The cashier thanked me and I noted out of the corner of my eye that everyone was smiling and nodding. I have to admit. That felt really good. I had brought peace to Kroger that day.

You have to ask yourself, why are we all so frustrated? Actually, that is a fairly easy question to answer. Look at all the colossal shit that has happened in all of our worlds lately. We’ve got the ongoing pandemic (depending on which blend of fact and fiction you subscribe to. I am just going to leave that one alone.) We have unemployment issues. We all know someone that has gone through incredible health issues. We have all had ridiculous amounts of financial strain. The list keeps going. It requires no stretch of the imagination to suppose why we are all on edge. The real question to answer now is how are we going to stop it? Are we going to be able to act like logical, sensitive, compassionate humans again once things get better? Or are we so entrenched in the cycle of negativity that we have forgotten how to recognize when things are good? I can understand the negative reactions to negative environments and things that we cannot control. But, I am suggesting that we start trying to remember how to act like civilized rational beings again regardless. Take it slowly at first, deciding to be content with or grateful for some tiny little thing: a single decision that goes your way. Then, go from there. I am just afraid that if we don’t start at least trying now, we won’t be able to do it later. Then, we will have a much bigger problem.

Dr. Katz

Do NOT apologize for advocating for yourself!

To advocate is to publicly recommend or support. In terms of healthcare, it means speaking up for yourself and feeling more confident about the choices you make with your doctor. It means not letting someone else make all of your health care decisions without your input. It means being an active player in your health care team and helping drive your outcomes in a positive direction. It means asking questions when you don’t understand. It means keeping track of the course of your care. It means knowing your history and your family history and any other details pertinent to your health. It means following through with your doctor’s recommendations and taking your medications as directed. It means emphasizing an honest, team-oriented relationship with your physicians. It means being honest about your preferences or concerns. Let me clarify. This does not mean being rude or inappropriate or deliberately obstinate with your physician or constantly being on the lookout for a mistake that you can capitalize on. It is exactly the opposite. That kind of behavior really does nothing but insure a negative outcome.

You get the picture? Advocating for yourself requires action! You are representing you! You are the only one who knows you intimately and is with you 24 hours a day. This is something that you should never have to apologize for. For me personally, I love it when patients ask questions and get involved with their care. It shows me that they are actually interested in getting better. I have some colleagues that would strongly disagree. They hate it when they have to spend extra time answering questions. They view it as more of an act of belligerence or a personal attack, doubting their expertise. To me that is just a sign of their own insecurity in their recommendations. I say ask away and don’t leave the office until you feel comfortable.

Did you know that studies show that people who advocate for themselves are healthier and tend to live longer? Sounds like another bonus to speaking up if you ask me. Self advocacy is important because it helps you to be able to make your own decisions. It helps you gain self-respect and self-confidence. It helps you form an alliance with your physician. It helps you be a part of the doctor patient team relationship. It helps you learn to express yourself properly to attain the goals that you want. From what I can see, there really isn’t a down side so speak up why don’t ya?

Dr. Katz

Still waitin for the Good Times to Roll.

Man oh man it has been quite the two years. I imagine that is a tagline that applies to millions at this point. It’s not that I am considering myself anything special but my gosh, just how much of a shit show are we all supposed to endure? Is there no end? What is the purpose? Are we being punished? I don’t understand.

Let me break it down for you. In the last two years, there has been an ongoing pandemic, businesses have been shut down, people have died, my daughters have had some major issues, I got cancer, and now my husband is having open heart surgery. I am not in a competition with anyone or anything but sheesh, it feels like a lot. I am not a person to complain per se but after awhile, even I am not immune to the occasional breakdown and thoughts of why me and why us? I start asking stupid questions like Does the universe hate me? Is this some kind of karmic retribution? Why can’t I make sense of this?

Then, I stop a minute, take a breath and try to calm myself. I realize that I am asking the wrong questions. All I am doing is making myself crazy trying to find an explanation or blame. This only leads to frustration, confusion, and anger. It won’t get me anywhere. At some point, I need to let it go and concentrate on moving forward and learning from what has happened. Otherwise, more bad things are bound to happen if I get stuck in a vicious cycle of negativity. That negativity will do nothing but drive more bad decisions and lead to further bad outcomes. I am not saying that we are not allowed to be human. We are allowed to feel sorry for ourselves and have boohoo moments. We just can’t let the boohoo moments define us.

Dr. Katz

It’s Not Over Just Because Chemo is Over

Wow! There are so many things they don’t tell you about being a cancer patient! When I say “they” I am referring to a proverbial all-inclusive group of people that includes everyone that is in charge of your care and even other patients who are unable or unwilling to share their experiences. I am learning a lot as I go and I am convinced more than ever that it is my mission to pass on what I know or have experienced to all of you. I am still determined to be the flashlight that helps guide patients through both their cancer experience and what comes after.

So, here is what I have realized. It is not really over until it’s over. What the heck do I mean? Let me explain. Most of us logically assume that when the last drop of chemo has coursed it’s way through our blood stream and the most recent scan confirmed that we are cancer free, at the moment, that we are, in fact, done! Yay! Hooray! Whooo! It is time to party, right? That’s what I thought. I really truly thought, or at least hoped, that the moment I got that final good news that this warm and fuzzy feeling of overall cleansing and good health was going to wash over me, my energy and health would be renewed and I would be ready for anything that came my way! Nothing could have been further from the truth. Now I am not blaming anybody. Nobody told me that that was going to happen. I am solely responsible for my own rose-colored glasses personal patient vision. However, nobody counselled me to the contrary either. I was just kind of left to figure it out after my perfunctory but heart felt congratulation speech from my health care team.

Here is what really happened. I got my good news. I was elated at the moment and kind of skipped out to my car( and then got short of breath from skipping..lol). Then I got into my car and, ironically, We are the Champions by Queen came blasting on the radio. I then proceeded to sob hysterically for about 20 min before driving home. I want to believe that the tears were all happy, but now I am not so sure. My mind started racing with all kinds of different thoughts ranging from yeah, I’m free to omg what do I do now and who is going to look out for me? My head was completely spinning. I had to take a minute before my head was clear enough to drive home. I started to realize that this was not really over. I had the next five years of my life mapped out with repeat scans and follow ups. Was it going to really be over then? What if I got some weird symptoms or twinge in the wrong place? Should I ignore it or should I worry because something else might be wrong?

I spent some quality time trying to talk myself down from the ceiling and rationalize the fact that I would need to give myself some time to be able to process information from my body normally again. That lasted all of a few minutes before I was on the phone to my therapist, making sure that I had regular appointments scheduled for the next several months. I was not going to be able to do this alone and I wasn’t allowed to restart my anti depressant for another month or so.

Ok, so now I had my therapy appointments in place. I rebooted my calm app on my phone. I reached out to my friends and fellow patients. I felt like I was doing everything right, or at least what I could do at the moment. Everything was going to be ok right? Nope! Then, the later complications of chemo started rolling in. My liver and kidneys took some hits and had to recover and my thyroid died completely. All the symptoms I was having that I was trying to assume were psychosomatic were actually real! Some of the stuff could have actually killed me! Thank goodness that we have modern medicine and options for all of them, but still scary nonetheless. There was no room for relaxing! There WAS still stuff to worry about! I knew it! My doctor said that some of these complications and side effects could be a factor for years afterward. Fantastic! I understood going in that there was going to be a risk trade off in exchange for curing my cancer, but on some level, I don’t think I fully understood just how significant the risks would be. I don’t think any patient does.

Here is where I think we need to do better for patients. We need to do better than handing someone a stack of papers several inches thick to read over and sign. We need more than just one chemo teaching session. We need to counsel patients that complications are real and that we need to have a reasonable level of vigilance after treatment is over. We need to recognize that PTSD is real and affects people that have experienced any kind of trauma, whether it is casualties of war or cancer. There needs to be a plan in place for those kind of things BEFORE they happen. We need to shape patient’s expectations for their treatment and for themselves BEFORE things happen. We need to give the a glimpse into what can happen and what they can expect and let them know that we have tools to address all of it. I have to believe that being proactive could potentially save a lot of suffering, both physical and mental, for patients. It has to be better than being behind the eight ball and struggling to deal with all of these issues when they are already full blown and both your mental and physical energy is already depleted.

Here is the bottom line. I am proposing a new plan. First, start with detailed one on one counselling before treatment starts for as many sessions as necessary with the key goal of shaping expectations and making preparations. Second, assign each patient a mentor who has actually gone through the process that can be a touch stone throughout treatment and beyond and who can offer encouragement, and more importantly, guidance and reassurance as things happen. Third, anticipate the possibility of PTSD, complications, and side effects after and during treatment and try to prepare the patient as best as possible. Set them up with therapy from the beginning. Start them on medications if possible during treatment. Be vigilant for side effects and try to catch them early. This all sounds like common sense but I am willing to bet that it is NOT common practice. I truly feel that implementing these few extra steps would have a tremendous positive return on patient recovery and outcomes that would far outweigh any additional healthcare costs incurred. I guess it boils down to what the true goal is : patient survival in terms of numbers versus patient survival in terms of whole health, mental and physical. Last time I checked, we are all more than just a number.

Dr. Katz

Do Baldies Really Have More Fun?

Hey there everyone! Long time no blog. I know right? It has really been a month of visciousness but now I am ready to get back at it with humor, wit, vim and vinegar. Here we go.

As I embark on my soon to be fifth month of hairlessness after shaving my head on video on the 24th of March, I am realizing just how much has changed. I can remember thinking OMG how am I going to survive doing this? How much more vulnerable can I get? Now EVERYONE will know that I am sick without being told! ( as if my public announcements and all the videos had not clued everyone in already. Ridiculous right?) I am not sure I can handle this! I’m not sure I can pull it off! The list of original thoughts goes on and on, all with the same underlying theme of potential fear and lack of self-confidence.

Well, that said, it really hasn’t been that bad. Actually, there has been a strange element of ultimate freedom that arrived simultaneously as my hair departed. I can remember rubbing my head in the mirror, both surprised and soothed at the smoothness of it. I can remember my daughter exclaiming in surprise, ” Hey mom! It really doesn’t look as terrible as I thought it would! Your head actually isn’t gross to look at!” Gee thanks honey. Best compliment I ever got…lol Apparently she had visions of some wrinkled, misshapen, irregular mole-filled lunar landscape. Glad I was able to surprise her.

Seriously though, I meant what I said about the freedom. It’s as if being bald offered an explanation about my health that I didn’t always need to confirm verbally. No, it didn’t lay out the specifics for me, but it, pardon my pun, gave a “heads up” to people even before we entered a conversation together. It somehow took the pressure off by allowing them that extra few seconds to reconnect their mouths and their brains before they said something that they regretted. I may be stretching this a bit, but I dare say that sometimes I think it has made people a little nicer to me. Now whether or not that was genuine or just forced awkward sympathy, I will take it gladly. Somedays you just need a little extra kindness, no matter what the source.

Here’s another bald bonus. The shower time has literally been cut in a third! I am lightening fast at getting ready in the morning. I can literally shout out ” I’ll be ready in 5 minutes” and actually mean it! I am also able to claim the occasional sensation of being cold for the first time since menopause started teasing me five years ago. Ok that is pretty fantastic right there. I was pretty sure the word cold had disappeared from my vocabulary all together.

Don’t let me kid you or myself though. It hasn’t been all sunshine and roses. All positives I mentioned aside, being bald has it’s share of negatives as well. It metaphorically facilitates a visual and mental level of vulnerability like nothing you have ever experienced before. It is a daily visual reminder that you are, in fact, not yourself right now. You have something going on. You are sick. All the scarves, wigs, and sparkles in the world cannot erase that visual completely. Sometimes that is tough.

You sunburn more easily on your head and dang it, I never realized how much my hair shielded my eyeballs from sunscreen. Wow does that burn! I realized quickly that I had to decide between altering my application technique and wearing some kind of tacky headband to keep that from happening. By the way, the altered technique won. I was not going to walk around with a large sun stripe on my forehead.

All in all, being bald has not been as rough as I would have thought. Sometimes I think I am getting too used to it. I actually start worrying about how I am going to temperature regulate when my hair starts growing again. For a moment, I actually considered keeping it going. Then, just in time, Facebook will pop up a memory of a particularly fabulous picture of me from the past with a great hair do and I am jolted back to reality. Yeah, life with hair was good too.

Have a great day everybody!

Dr. Katz

“The End” ( When chemo is complete)

We are almost there

Saying it out loud

Doesn’t seem real

The Real sigh of relief isn’t for five years

The shadow monkey on my back

Constant reminder of what could be

Excited and terrified to be done

No more internal liquid defense system

Who will protect me? What will protect me?

Is hyperrvilance the answer?

Or is living my life the answer?

It’s probably somewhere in between

“The End” doesn’t actually = instant real me or whole me

Time, patience, perseverance is the key

Setting realistic expectations

That is the true challenge revealed

Seventh Inning Stretch

so close and yet so far

antsy even though I know it’s necessary

side effects more annoying

emotions pouring out all over, unchecked

confusing my caregivers

having trouble convincing then that it’s ok, I’m ok

I really do understand what’s going on

I’m not falling apart or anything

just a few crumbs breaking off here and there

just anxious to be whole again

Almost there!

it’s not over yet but we’re close

close enough to see the glimmer of light

far enough away that we can’t reach it

liquid weapons pummeling the invisible enemy

hit after hit

like a prize fighter I come back for more

willingly and begrudgingly at the same time

will to live is strong even though my body feels weak

the “good days” seem fewer and farther between

ultimately it doesn’t matter

have to keep going

have to show up

have to represent

no one else can do it for me