Healing

Saturday, August 3, 2019. A couple weeks ago I messaged Dr. Rugo and asked how soon after chemo ended before it would be okay to have caffeine, a beer and a pedicure. I was so happy to get the green light for all three with a word of caution about too much beer.

A year ago, I could have never imagined the me that sits here today. The me who would be so excited to have a cup of coffee. At that time I was contemplating retirement and imagining the things I would do in 2019 with all my free time.

If you had told me that instead I’d be on the other side of a cancer diagnosis, having endured too many chemo treatments, biopsies, sonograms, MRIs and various other tests;

That I would need a port and I would have surgery that would leave me with 5 fewer lymph nodes and a long scar under my right arm;

That I would get down to 84 pounds and lose all my hair not once, but twice;

Well…come on. Really? No way.

Yet here I sit, a different person than the one I was. This experience has changed me, as I knew it would. How could it not? And once again I am at a crossroads.

On Monday Steve and I met with a radiation oncologist Dr. Yang and her team for a consultation. Both Dr. Rugo and Dr. Ewing were recommending radiation. I don’t want to do radiation, but I felt I owed it to myself to at least listen to what they had to say.

The recommendation was for 25 treatments—5 days a week for 5 weeks. My Monday appointments would be later in the day to accommodate my 3-hour drive. I would stay in San Francisco Tuesday through Thursday. Friday appointments would be in the morning to accommodate my 3-hour drive home for the weekend. I would stay in UCSF housing near Golden Gate Park and take a shuttle to the hospital each day. The housing is not free, but rather pay what you can afford.

The radiation would likely begin the week of August 12. They gave me a week to make up my mind.

Pros. The chance of a recurrence in the next 2 to 5 years drops by 20% for cancer patients who have radiation after surgery.

Cons. There are quite a few.

  • First, they did not have any data on the chance of a recurrence for patients who had chemo and radiation after surgery.
  • The radiation would be under my right arm and in the clavicle area, and it would slightly overlap the area I had radiated in 1999 and 2000 (they try never to radiate the same place twice).
  • It would also radiate the edge of my lung which likely had radiation exposure 19 years ago—you see where I’m going with this.
  • There is an increased risk of lymphedema.
  • There is a nerve that runs down the entire length of your arm from the clavicle that if damaged could cause paralysis (so if that area was radiated 19 years ago, they could not radiate it again).
  • Finally, it’s possible there are no cancer cells in either of those areas and they would simply be radiating healthy tissue.

A decision. My immune system feels so compromised, it seems impossible to imagine enduring five weeks of radiation bombarding my worn out and tired little body. Physically and emotionally, I’m exhausted. I need a good amount of time to recover. Not like when I was 47 and did a 60-mile fundraising walk less than 4 months after my treatments ended. I need hair, to gain weight and a sense of normalcy. I need to relax and reconnect with my friends. This journey has been an isolating experience.

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So. I’m not going to do it. I’m going to let the healing begin and discover what enjoying retirement feels like.

Just trust yourself, and then you will know how to live. —Johann Wolfgang von Goethe

The alien has left the house

Tuesday, July 23, 2019. Ever since I first got my port in early February, I’ve referred to it as an alien invader. It was this weird walnut-sized lump just under my skin on the upper left side of my chest that was a port to draw blood out of or pump poison into my artery. It always felt tight under my skin and would often peak out from whatever shirt I might be wearing. It wanted to be noticed because it was smart. A smart port. An alien.

I’m told that some people get used to their ports and have them in place for many years. I can’t imagine. The port was one thing I know that I could never get used to. Oddly enough, I’m grateful I had it, but it was a love-hate relationship. I loved that the oncology nurses didn’t have to poke around to find a good vein for my infusions, and that it was so easy to draw blood from. I hated everything else about it. For me, there never was a truly comfortable sleeping position, and I was always putting my hand over it to protect it when one of my cats was trying to snuggle up to my chest, or if someone gave me too firm of a hug. It was just creepy.

Yesterday I finally had it removed. My nurse was once again Marietta. The same nurse who sweetly guided me through the implanting of the device. She didn’t recognize me at first. Probably because I was bald and 10 pounds lighter then the last time I saw her. But after a brief exchange, she did remember. It was good to see her again. It’s always comforting to see a familiar face when you are a tiny bit terrified.

Mostro Alieno Testa-Monster Alien Head-Vector-1After I changed into the giant hospital gowns—one opening to the back and one opening to the front, super giant one-size-fits-all hospital pants, and a pair of slip-proof hospital socks; I was in uniform for whatever came next. After a short while, young Dr. Winkler came into the room I was waiting in and explained that I would be given a local (lidocaine) and would be awake for the operation which would take about 30 minutes. He told me that when someone receives a port, over time the body creates a shell around it. In fact, they would actually break through that shell to remove the port and pull the line that went to my artery. A port encased in a shell? It really is a creepy alien. I told Dr. Winkler that I called it my alien, and he had to laugh.

Soon Marietta escorted me into the operating room, and had me lie on the table. Another nurse, Heather, prepped my port area for the doctor, put a wrap on my bald head, and finally created a tent over my head to block my view of the actual procedure. That being said, I could hear everything. And the doctor (who ended up not being Dr. Winkler) and I carried on a conversation much of the time. He told me he would be injecting the site with lidocaine. I told him I loved lidocaine and to load me up. He said, “Great!”

After I was properly numb, he made his incision and then there was some shell cracking, and port prodding, and line pulling. The good doctor told me if he had it to do all over again, he would have been a bartender. Hmmmmm. Anyway, four stitches later I was declared port-free! I was so happy! I am so happy! The alien has left the house. My house. My body. Gawd, how great is that?

One day, one step closer to normal. Nothing a head of hair and an ice cold beer can’t fix.

It is only when we truly know and understand that we have a limited time on earth—and that we have no way of knowing when our time is up—that we will begin to live each day to the fullest, as if it were the only one we had. —Elisabeth Kübler-Ross

I drank the kool-aid

Thursday, July 11, 2019. I’m just going to keep this simple. When Steve and I met with Dr. Rugo on Monday I told her that I would like this to be my last chemo. These treatments have been a huge struggle not only physically, but mentally and emotionally. I’ve tried to rise above it, but…

Just saying those words out loud, “I want this to be my last chemo,” I immediately felt lighter. I felt like smiling. I felt like I’d made the right decision.

Surprisingly, Rugo did not try to talk me out of it. Of course she was disappointed. But I asked her what the benefit was for 4 vs 3 rounds of the “A.” She said there wasn’t any data on it. I said 4 treatments is the protocol, right? And she said yes.

I then asked her to set me up to have my port removed on July 22. She wrote the order, and then said she would see me in 6 weeks. Six weeks!

After departing hugs, Steve and I headed to the 5th floor for my final chemo. I was flooded with a sense of good fortune and even joy when my favorite oncology nurse Lisa was the one who came to get me. It felt like a sign that stopping treatment really was the right thing to do. As we walked arm-in-arm into the infusion room, I told her how lucky I felt that she would be giving me my last treatment. She, in turn, said that she was the lucky one.

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And so, I truly am on my way to recovery. As sick as I have been since my treatment on Monday, I keep reminding myself that this is it. It doesn’t seem quite real yet, but once the port is out I think I will really believe it.

Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. —Steve Jobs