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