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

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

It gets harder before it gets easier, but it’s worth it!

I feel like this statement has a wide general application in life. It applies to every path, every goal, and every challenge. Just think about it for a second. Every time we set out to accomplish something, we set out with full steam and limitless energy at first. Then, about half to three quarters of the way to our goal, we hit that proverbial wall. Our resolve waivers. Our energy supply decreases. We feel sure, at the moment, that there is no way we can finish. We wonder why we started in the first place. Interestingly, the perceived obstacle at the moment isn’t even that significant at the time. Often, it is just a slight twist on what we were already dealing with, a slight change in variables. And yet, it can be enough to stop some people in their tracks. I have a theory here.. I think this happens because we all need a break sometimes. We need to let the steam out of whatever pressure cooker that we have created for ourselves at the moment. In and of itself, this break can be healthy and allow us time to regather the strength to head back toward completion of our goal. We need to give ourselves permission to take these brakes.. The trick is to not take too long and get back on track once the break is over. I guarantee you, finishing what we started will be worth it.

Dr. Katz

Pandemic apathy or…I think I’m getting too used to being by myself

Cancer plus pandemic has forcibly reduced my level of human contact over the last year. Whether it was due to government regulations or physical restraints from my illness, the effects were the same: less people were physically in my life at any one time. At first I fought it. I felt angry and restricted, especially when I was still healthy. Then when I got sick, I still felt resentful every time I had to be left behind when my family went somewhere or left out of a favorite activity. After awhile though, it started to feel easier to bow out of things, easier to just stay home and sit with my dogs, watch TV, and have no expectations. It started to become too comfortable. It is still too comfortable. Traditionally I am a social person who needs people, who savors life and interaction. Now, it seems like I have to force myself to leave the house and carry out any kind of responsibility. Now granted, I have the plethora of chemotherapy side effects like pain, neuropathy, and intense gastrointestinal distress that legitimately get in the way sometimes. That is true. However, I find myself wondering if I will still have reluctance to gather even after those excuses are out of the way. This is concerning. The words lazy, lackadaisical, and apathetic have never before graced my daily life vocabulary. I don’t really like them setting up residence now, but I am not sure what to do about it. I don’t really think that it is fear anymore that is keeping me inside. I think it’s something worse: apathy. I am just over it. I am just over all the panic and the restrictions, but at the same time I am out of the energy to discuss them, fight them, or act against them. What I need is a strategy for emergence that makes sense for me, my sanity, and my particular set of circumstances and limitations, not anyone else’s. Here’s hoping that I develop a good one and I hope you do too.

Dr. Katz

Advice from a friend

sometimes you just need to cry

hold on a minute

close your eyes

let the emotions rise and fill

eyes watering

heart pounding

Fling open the gates

set it all free

let it all go

recharge from within

regulate your breathing

focus on a time

when you were happy, healthy

excited for the next adventure

allow solid,good memories to carry you

lift you gently when you can’t support yourself

rest your mind

conserve your energy for another day