Celebrating Endings & Beginnings

If I were tech savvy, I would have figured out how to make confetti explode over this blog post once you opened it up.  Instead, you will just have to trust me when I say that as I write this, I am celebrating. 

Yes, I just finished 20 rounds of some form of chemotherapy/immunotherapy.  I am DONE.  I even got the full  “end of your chemo treatment” experience this morning as I left the UC Davis Cancer Center.  That’s right, I got bell ringing, hugs from nurses, and even a certificate of completion with lovely notes from the oncology nurses (pictured above). Imagine a mic-drop as I practically danced out of the “infusion” center and thought to myself:  I hope I see you NEVER.  [Note: Let me just say that I love oncology nurses.  They are angels. They work with people who are facing frightening and painful circumstances. Yet, they always have a smile and good advice for you.  And, while I love them, I would rather see them again in a restaurant or a park or at a concert, but not in an infusion center.]

On April 1, 2020, I started my first round of chemotherapy/immunotherapy – a caustic cocktail of Taxotere, Carboplatin, Herceptin, and Perjeta.  On June 16, 2021, I finished my LAST round of chemotherapy/immunotherapy – a less nasty mix of DM1 (the chemo) and trastuzumab (the immunotherapy drug Herceptin), the combination of which is otherwise known as Kadcyla.  Over the course of 14 ½ months my body has taken a beating, my self-image has been tested, and I have swung between emotional lows that I have never experienced before to emotional highs that had me crying when I drive home alone in my car from the UCD Cancer Center.  After nearly a year and a half, I have emerged battered, bruised, with a liver that is not very happy with me, and looking like I aged probably a decade. Yet, I am victorious. Again, if I were tech savvy, this is where I would cue the song, Titanium, which I listened to during my beginning of my Kadcyla treatments.

These last 14 1/2 months have been a marathon (16 months if you count when I got diagnosed).  Honestly, it feels like I have been getting pumped full of drugs for FOREVER.  I have forgotten what it feels like to feel “normal.”  It is funny how the drugs to cure you of a disease that can kill you are the very thing that make you feel so terrible.  At the end of this final cycle of Kadcyla, my body is done with this whole experience. Who am I kidding? I am DONE with this experience. I have low red and white blood cell counts, low platelet levels, and high liver enzyme and bilirubin levels. My feet tingle and burn.  When I sit too long, my muscles and joints stiffen like a bad case of arthritis. I get nosebleeds nearly every day.  My gums bleed. I have a horrible looking bruise on the left side of my chest where “Marty Feldman” – otherwise known as my left “foob” (fake boob) — has drifted off to the left side of my chest like some kind of wandering eye.  I also have these weird red blotches (called spider angiomas) on my arms and chest – another gift from my struggling liver.  Oh, and my hair – yes, well, it has yet to really grow back.  Instead, I have about an inch of straggly, patchy hair that has managed to grow back since my hair fell out in April 2020.  I am not kidding you when I say that when I wake up in the morning and go into the bathroom, I startle myself when I catch my reflection in the mirror.  I seriously kind of jump and think who the hell is that person with the crazy Uncle George hair standing on end.  Then I think to myself: Oh yeah, that is me. Sigh.

So, the marathon is over, and it was not pretty.  The “every three week” treadmill of blood work, doctor visit, infusion, and side effects is OVER.  I had thought that my main feeling would be celebratory, but honestly, I almost feel more relief than elation.  I worried through the whole 14 rounds of Kadcyla that I would not be able to finish all of the rounds. I worried that my body would not hold up.  I worried even more as my various blood, platelet and liver numbers came back every three weeks a little worse.  I even had to delay my 11^th infusion by a week because my bilirubin numbers shot up.  I was not sure I would make it to round 14.  But here I am with my body processing the drugs for one last time.  I am so happy I made it.  Now, every week from this day forward, the drugs will dissipate from my system (except for the hormone drug I take for the next four years).  The side effects should start to fade, and my energy levels and stamina will come back – as will hopefully my hair. 

I am not going to bullshit you – cancer sucks and cancer treatment sucks.  The thing that keeps you going is the knowledge that “but for” the cancer treatment, you would die.  That is quite a motivating factor despite the parade of horrific side effects.  It is funny that people say to me that I was so brave during my treatment.  No, I was not brave.  I was scared shitless.  I was terrified.  I only endured this because the alternative was that it was 100% certain that I would die from cancer if I did not do it.  Now, my chances of dying from cancer are much lower – not zero – but MUCH lower than 100%. 

It is amazing what you are willing to endure to have more time with family and friends.  I want to see my kids graduate college, find partners, have children, and launch careers.  I want to enjoy my “later” years with my husband, hold his hand, explore new places, cook meals together, and grow old.  I want to spend more time with my mom and be there for her. I want to be able to do the same for Chris’ parents and brother and sister.  I want to hang out with my friends, drinking wine and laughing, going on walks, and talking about our lives.  I want to see the sun come up and go down, and enjoy my garden and walks on the beach or in the mountains.  I have so much more damn living to do.  That is what keeps you going.  That is what gets you in your car for yet another trip to the infusion center to be pumped full of toxic chemicals. 

While the joy of living and the desire to live keeps you going through your treatments, I have thought quite a bit about what might be the tipping point in that balance between quality and quantity of life?  I knew there was an end date to my treatments.  But what if there wasn’t an end date?  What about those who must have these treatments to keep the cancer manageable?  I know this is a morbid line of thought, but I have thought about it a lot.  I certainly was not anywhere close to that type of thinking with my current treatment because my prognosis is excellent, but I did think about how bad it would have to be for me to stop treatments. I feel like I should not even admit to thinking about this, but I want to be honest about what this experience has been like for me.  You definitely think a lot of crazy stuff when you are lying in bed at 3 AM staring at your mortality.  Before cancer, I just never thought about this kind of thing much – or at all.  I will say that when I started down this road in my head, I always came to same conclusion: I hope I never have to find out what that tipping point is.  Indeed, I hope I am 100 years old and crazy as a loon if this kind of question comes up.

Once I have surfaced from plumbing the depths of my mortality, I pretty much come back to the same place in terms of what I have gleaned from this experience, which is simply that I want to LIVE. Yes, bad stuff has happened, but I am still here, and I intend on making the most of my time while I am able.  And, yes, bad stuff may still happen, but so what? I am not going to dwell on shit that has not happened, and I am not going to dwell on the shit that has happened.  What is the point in that?  Our time is too precious to waste it on stuff you cannot control or on stuff that is not worth the mental energy. This quote from the movie, “Auntie Mame,” keeps coming up in my head: “Life is a banquet, and most suckers are starving to death.”  I used to think that it meant that you had to live these over-the-top experiences to really “dine at the banquet.” But I think this quote means more: I think this means that we should never hold back on enjoying our lives and being happy.  Or, as another quote I heard last week that I will paraphrase – We should not wait for our lives to be less hard to decide to be happy.  Enjoying our lives – the little moments and the big moments and the good and the bad – that is what we should strive for while we are here because as far as I know, we get only one bite at the apple in our current forms, so we better make the most of it.

So, here I am – making the most of my time on this beautiful blue marble.  I may have started out this post telling you about my side effects and how crappy chemo is – and it is – but, I also have learned to really enjoy the moments.  Even when I felt like roadkill, I tried to enjoy a moment when I felt better or when I sat outside and felt the sun on my face.  But I am still a work in progress.  I am not going to lie and say that every day is wonderful.  When something happens that feels like a kick to the head, I am not going to sit there and say, “thank you, may have another?”  I still wallow and feel bad and cry.  I still get mad and yell.  But I do try to move forward and belly back up to that banquet of life.

What is next for me? I probably still have some more blog posts in me.  I still have one more surgery to go.  My chest expanders need to be removed – FINALLY – and replaced with breast implants.  Hopefully, Marty Feldman will be put back into place and the nasty bruise will fade away.  That surgery will be on July 19^th.  As I mentioned, I am still a work in progress – literally and figuratively.  I will have to learn how to move forward now as a cancer survivor, which is wonderful and terrifying.  Wonderful – because I am done with the treatments and should be cancer free.  Terrifying – because I will not have any more treatments and I will not see my oncologist regularly and I will not know if the cancer comes back until something happens.  So, I think I probably will have more to share as I shift into the next phase of moving forward with my life. 

I do want to wrap up this post with a HUGE THANK YOU to my family and friends for being so fucking awesome.  Chris was a warrior.  The poor guy not only had to deal with a wife fighting cancer, but he had to do it in a pandemic!  He was there through thick and thin and never wavered.  He shouldered this burden with humor, strength, and grace.  Samantha and Ben were rock stars through all of this. I CAN imagine how scary it is to have your parent sick and think about the possibility of losing that parent.  It was something I had faced when I was a child, and it was something I had hoped that my children never would have to experience.  But unfortunately, they did have to experience this fear and they were amazing.  The upside of the pandemic was having Sam home from college for the first 6 months of all this craziness.  She helped so much.  And, after she returned to Boston, we talk every day.  Ben was a such a comfort – always there to help or laugh with me or watch the Harry Potter series with me TWICE.  My mom – who had her own challenges with the loss of my dad – was also amazing.  We talk every single day.  The rest of our family gave us so much support and encouragement as did all our friends – even when they had to do it from a distance.  Our friends continue to amaze me. Just yesterday, Chris and I got on a zoom call with two friends and then another twenty showed up to tell us that they are joining us on our trip to Hawaii in the fall to celebrate the end of this crazy 14 months of treatment.  Wow.  Seriously.  How did we get so lucky?! And then today, I got on a zoom call with a number of colleagues, and they all had pink Zoom backgrounds with “Congratulations” on my last chemo treatment.  Again, wow! They say that “many hands make light work” and in the case of what we just faced over the last 16 months, we were blessed with many hands who lightened the burden of fighting cancer. 

As for all of you who have been reading these intermittent missives — thanks for being so supportive.  Thanks for listening when I needed you to listen.  Thanks for laughing with me and crying with me.  Thanks for coming along for this 16-month wild ride.  I do not know what is around the next corner, but, man, I am so happy that I am here to find out!