Just a little misstep

January 27, 2019. When Robin the Chemo Teach nurse told me I would probably start losing my hair after three treatments, I didn’t think she meant the very next day. But right on cue, my hair started shedding on Wednesday.

I’m not sure why I actually believed in my heart that it wasn’t really going to happen to me. I didn’t even realize that was my truth. But it was like a big old punch to the gut when I ran my hand through my mop and a mass of hair came with it.

My first thought was, I need Steve to take a photo while I still have something there to take a photo of. So he did.

lana_hairsm-1-4

Next I ordered a pair of electric clippers. I envisioned a buzz cut in the very near future. So near in fact, that I added next day delivery to the order. After all, I was leaving a trail of hair everywhere I went, my pillow was covered in hair in the morning. I was feeling sad. I wondered why.

Intellectually, I knew this day was coming. Who am I trying to kid? So I sent an email to a dear friend of mine who knows all too well what it’s like to lose one’s hair. In the subject I put “Hair,” and then I wrote, “Mine is coming out in handfuls. Any advice?” My phone rang almost instantly.

We had a sweet discussion about being defined by our hair, how short should I buzz it and mirrors. We talked about wig or no wig, how many hats I had, and reminded oursleves it will grow back. She said, “You know, it’s just a little misstep.” She made me laugh outloud.

Talking with her was super helpful. But what I realized in the course of our conversation was that the real reason I was so distressed was because losing my hair made what I was going through even more real. Not having my hair was like putting a sign on my chest that said, “I have cancer.” It brought my illness front and center, whether I wanted it there or not. Shit.

The buzz. Last night I handed the clippers to Steve while I sat on a chair in the middle of the kitchen floor. We were both pretty emotional as he put the buzzing clippers to my head and took the first pass. Our eyes welled with tears, and we had a quiet moment. Then he forged onward and before we both knew it, I had a new do.

Lana with a buzz cut

All that’s left now is to go completely bald, which I’m certain will happen and within the next few weeks. Dare I say it again? Shit.

Whatever our souls are made of, his and mine are the same. —Emily Bronte, Wuthering Heights

 

 

Shrinkage – Part 2

January 22, 2019. It was another very long day.

PART 2. Before my appointment with Rugo had ended, we needed to ask about one more thing, and Steve brought it up, “Is it time we talk about a port?”

And so we did. Since I’m “all in” now, and I fully expect to complete 12 hits of this stuff, a port just makes sense. Not only would I receive my infusion through this port, my weekly bloodwork would also be drawn from it. No more poking at a minimum of two times a visit. We agree to getting it scheduled. February 5 at 10:30 a.m. It’s an outpatient procedure where they put you in that twilight place while they “implant this port under your skin that is about 1/2″ thick and about the size of a quarter. You can feel its raised center under your skin. A flexible piece of tubing (catheter) is connected to it. This is tunneled under the skin to an area near the neck where it enters a vein. —per Endovascular Radiology Associates, Inc.” Having the port will make it easier for the chemo nurses and me, especially as good veins get harder to find. It freaks me out a little.

Rugo’s scheduler Em will get me all set up, because once it’s in place, I will need to have a chemo nurse do my weekly blood draw, and that requires appointments. Em is a master scheduler and likely a whiz at puzzles, too.

Chemo. We head on up to the 5th Floor for the infusion. We are nearly an hour and a half late, but within a few minutes my chemo nurse for the day Lisa calls us in. We follow her to an infusion room that has 4 stations. One is occupied and we choose the chair closest to the window. It is a beautiful day in the City and the sun streaming in through the windows is delicious. I get settled in and Steve takes the opportunity to get a bite to eat.

Lisa tells me she has worked at UCSF since 1990. I feel like I’m in good hands.

By the time Steve gets back I’ve had all the pre-meds. I show him that I’m getting a little rash above the IV line and it burns a little. We tell Lisa and she thinks the best bet is to relocate the IV. We agree. Poke #2: As hard as she tries to find a vein that will work, her attempt is unsuccessful. Poke #3: Lisa calls in another nurse Carolyn who tries to find a good vein, but the one she chooses doesn’t work. She tells me she is going to try another location. Poke #4: She thinks she has found a nice, plump vein, but she hits a valve and can’t push the needle through. Each nurse is allowed two attempts, so now Nurse Emily is brought in. Poke #5: Success! The vein she used is on the back of my forearm below the elbow, and she placed it high enough that they can use a location below it for my next infusion. Right now, I am thinking deciding to get a port was the best decision of the day. We finish up with the Taxol and Carbo and finally leave for home around 8 p.m. We are both exhausted.

Home is the nicest word there is. —Laura Ingalls Wilder

 

Shrinkage

January 22, 2019. This was another very long day.

PART ONE. Steve and I arrived for my blood draw at 11:30a, an hour and a half before my 1p appointment with Dr. Rugo. We pass a line of about 4 or 5 people on my way to signing in. The waiting room; a very small room with 3 chairs cramped in along one wall, 4 more on an adjoining wall, one chair against a short wall and another lone chair tucked behind a corner; has 7 more people waiting, 5 who are probably patients. Steve and I spy two empty seats. He takes the one on the short wall and I take the one just behind him tucked into the corner. We wait for over an hour because there are only two phlebotomists. My name is finally called just 15 minutes before I’m scheduled to see Rugo.

We head on up to the 2nd floor and check-in. The receptionist lets me know they will make me a wristband for my infusion. I might not have mentioned it before, but the wristband is scanned when I sit in the infusion chair and then each time Taxol and Carboplatin are administered. When the wristband is placed around my wrist, the young man is very careful not to make it too tight. It is so loose, I can actually slide it up and wear it as an armband. That gives us a good chuckle.

They take my vitals, and then we wait. An hour later, they finally call my name, “Eberhand”. I say, “Eberhard.” The nurse apologizes as we walk through the doorway. I say don’t worry about it. I motion my thumb back at Steve and say, “When we met I thought he said his name was Everhard. And I thought he was just flirting, so I asked him if this was a joke.” That got a burst laughter from everyone who was within hearing distance.

In the examining room, I change into an open-in-the-front gown. About 15 minutes later, Dr. Rugo’s assistant Robin (a different Robin than my chemo teach nurse) comes in. I’m snarky right away and ask if we can just count on Rugo being 2 hours behind schedule every time. I couldn’t help myself. She apologizes, of course, and says they are working on it. I apologize for the snide remark, and again she reiterates they are working on it. She then asks a bunch of questions about any side effects I’ve experienced, looks at my blood work results (which are good), appetite, diet, energy level, sleeping patterns—all the usual touch points which she keys into my chart as we talk. She asks if I have a port. I say no, that I’ve been avoiding it until it’s confirmed the chemo is working, but I add that I think that it is working. She says that either way, working or not, I’m going to have to continue chemo even if they change the cocktail. I tell her no. That this chemo is it, that this is more than I ever thought I would do again. We drop the subject. Next, she gives my tumor sites a thorough exam and then measures each one. She compares her measurements to Rugo’s two weeks ago and with the ultrasound last Tuesday. My heart sinks a little when she says they look the same. It’s then that she lets me know that Dr. Rugo will be in soon, and she will remeasure.

About 15 minutes later, Rugo arrives. Apologizes for the long wait. I tell her no worries. She reviews my chart, and Robin’s notes. She immediately expresses her concern about me telling Robin that I wanted to stop the chemo. I tell her that isn’t what I said. I will only stop if the chemo isn’t working after three infusions. I then add, “I think it’s working.” Rugo’s pleased to hear this and realizes I’m on board, so we continue with her question and answer routine, and she reviews my blood work. All is looking good. Sodium is a little low, but EVERYTHING LOOKS REALLY GOOD.

Drum roll, if you please. It’s time for her to measure my tumors, and I’m feeling a little anxious. Steve, too. She proceeds and announces (in centimeters) …

Tumor                   2 weeks ago              Today
Chest Wall              3 x 2                             2 x 1.5
Axillary node         2 x 1.5                          1 x .8

We are all more than thrilled with this result. The chemo appears to be working, better than we hoped.

I think it’s more than the chemo that is shrinking these tumors. It angels. Angels on earth. People who believe I will be cancer free again. People who have me in their prayers. People who have me in their hearts. People who encourage me and believe. Believe, like me, in only one outcome. Those angels are you.

Failure is impossible. —Susan B. Anthony