It’s Just a Little Tougher to Bounce Back Nowadays

Wow. I have to say that having cancer has brought about more change than I realized. I think I tried to partition the whole experience in my mind as a discrete entity with a finite beginning and end. It somehow made it easier to trudge through with a positive attitude when visualizing an actual light at the end of the tunnel.

After the end of chemo, I am slowly realizing that, while that visual was helpful, it was not necessarily realistic. My journey did not abruptly end when chemo did. As I have discussed before, there have been many after effects and pitfalls since and I am learning about new ones every day. Each one I try to embrace, while fighting the little chip on my shoulder that I have to deal with it in the first place.

Most recently, I got my first actual illness outside of chemo in the first two and a half years. Yes. It’s true. Now that I think about it, one little-publicized actual positive side effect of the pandemic has been that we all have had less of the regular sick season viruses, etc because we have been wearing our masks, not doing as much, washing our hands, trying to avoid sick people, and not touching our faces as often. Granted, some of these precautions (like hand washing) should not have been new additions to our routine. Nonetheless, they have all contributed to less routine sickness. Anyway, my point is, that I haven’t really been sick in over two years. So, when I got this crappy gi virus, it really through me for a loop. Number one, believe it or not, I wasn’t really used to being sick. ( I get it. That sounds ridiculous considering I just went through cancer and chemo.) Number two, I was that much more stressed out about the repercussions of missing work because the economic strain has been significant from all the previous missed work. Number 3, it hit me a lot harder than I remembered from previous illnesses. Number 3 is what got me the most. I am just not bouncing back as fast I think I should be. There are a lot of reasons why that could be true. One could be my loss of perspective on being sick outside of chemo. Another could be that chemo has left lasting side effects that keep my body from fighting off sickness as well. My kidneys are not working as well so I get dehydrated more easily. My thyroid is still dead so I get fatigued and my metabolism is altered. The list goes on. You get it though right? There are plenty of reasons for me to have trouble bouncing back from regular illness. So, I shouldn’t worry, obsess, and beat myself up about it. But, alas, I do. I get distracted and instead of doing things to help myself get better, I waste time feeling guilty about who I am letting down this time, as if I haven’t left enough people down with all the cancer stuff. It’s kind of a vicious cycle.

So, here’s the thing. What do I do about it? The fact of the matter is I am the only one that can do something about it. NO one is making me feel this way but me. The guilt is all mine. I have to make the decision to accept this one more thing about surviving cancer. There will be changes that last long after the cancer is gone. They are not my fault. They are not my punishment for things done wrong. They just are. I can chose to move forward…or I can chose to be held back by things that I cannot control. I say forward it is. Otherwise, my recent win was all for nothing.

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

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

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

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

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

Man! It’s hard to feel sexy when you have cancer.

Picture the scene: Your partner gives you the let’s get frisky look. They start petting you in the way you are normally into. The sexy dance has started. The lights are dimmed aaaaaaand……nothing. You are laying there all bald and post chemo( well it has been a few days but you get the idea), fresh off your latest chemo hot flash, tired, bloated and not the least bit sexy….in your mind. You just aren’t up for it. It’s not you. It definitely isn’t your partner. It’s the freakin absence of sexiness that sometimes comes with cancer and chemo. I tell ya, the changes in appearance alone are a real confidence killer at times. My husband is the most amazing partner and best friend on the planet and regular me can’t get enough of him. But, cancer me is another story.

Cancer and cancer treatment can have a very significant impact on a woman’s sexuality in many ways. Disfiguring surgery may be required that can significantly affect your self esteem and confidence. Treatments can sometimes put you into premature menopause with hot flashes, vaginal dryness, pain with intercourse and decreased libido. Certain pelvic cancers require such extensive surgery, radiation, etc that a woman is left without proper function of her sexual organs permanently.

I get it, this sounds all doom and gloomy. The good news is that not all women are left with permanent sexual dysfunction after cancer. Sometimes the effects are temporary and things go back to normal when treatment is over. I am seriously hoping that I fall into this category.

Fortunately the data shows that if a woman was able to have satisfactory sexual experiences before cancer, she will be able to again. The American Cancer Society has a whole section of helpful tips and information for women who are having sexual issues resulting from cancer treatment. Some of these are in fact very helpful. The bottom line of all of them is that sometimes you have to get creative and you have to reinvest in your own self-love and confidence. Sometimes the same techniques for sexual satisfaction that you used before will not be successful anymore. You might not even have the same parts anymore. You may have to use more lubricant when you didn’t have to before. You may have to explore different things that excite you. You may require a vibrator for extra stimulation. You may need to try different positions. You may need to employ more fantasies into your sexual relationships. You may need dilator therapy to re-stretch the vaginal canal. These are just a couple of examples.

There is an interesting set of exercises recommended by the American Cancer Society for patients feeling anxious about sex and the way that their appearance has changed and adjusting to those changes. They suggest looking in the mirror, dressed at first, and noting the changes in your appearance: your surgical scars, ostomies, missing parts, etc. Then notice what you try to avoid looking at. Then while dressed, try to find three things that you like about your appearance. Once you are comfortable looking at yourself as a stranger might see you, then change the exercise and repeat it with you being dressed “sexy” for your partner. Finally, repeat the exercise nude with the same steps until you are able to look at yourself and adjust to the changes and feel comfortable. Don’t stop until you can give yourself 3 compliments like you did in phase one of the exercises.

The last thing to address regarding the impact of cancer on sexuality is the anxiety that goes along with it. It takes time to realize even when treatment is over that you are actually better and that life can go on, including sex. Clear communication is the absolutely paramount here. Talk openly with your partner about your fears and issues. Don’t leave them in the dark and just reject them. They can’t possibly understand what is going on in your head unless you tell them. Get therapy if you need to. Talk openly with your doctors. You be the one to bring it up. I can tell you right now that most physicians are not comfortable enough to make sure to address sexual issues at any time, much less with their cancer patients. This will be something that you really need to take charge of and advocate for if you want things to change and improve. As much as we try to deny it at time, our sexuality and sexual health are key components to our relationships and overall health. Sex is just as important for cancer patients as it is for every day folks. So, do what you can to preserve it. It’s for your health!

Dr. Katz

No Wisdom Here

Sitting in chemo today

listening to the chatter

several elderly patients

back and forth discourse and discord.

I eavesdropped a little

hoping for a glimpse of wisdom.

Sadly, wisdom is not what I heard.

anger, stubbornness, self-destruction

That’s what I heard.

“They can’t tell me to quit smoking

just because I have lung cancer.”

“I’ll do what I want!”

“I’ve lived this long haven’t I ?

Why change now?”

My heavy heart sank and filled with despair.

there was no wisdom to gain here.

Misguided thought processes with lethal implications.

The Utilitarian in me asks why they are getting treatment?

The Judge asks if it’s.fair that they are taking a spot from someone willing to listen and change?

Their perception is foreign to me.

No one is forcing then to be there.

Is gratitude an unwelcome sentiment when there is a potentially life saving option?

I sit quietly, my grateful heart appreciating my doctor’s and nurses, celebrating my half way point.

Sometimes it’s hard

Sometimes it’s hard

Hard to always smile

Hard to show a good face

Hard to have a positive attitude

But you know what’s harder?

Negativity

Frowns

Apathy

Each of those

more destructive than the last.

Not for me I said.

Not for me.

I need all my strength

To fight the real enemy.