Getting ready to fight

Cancer runs in my family. So, I have thought about the possibility of cancer showing up in me. I think that the spectre of it has driven many of my choices to push myself and to really try to live life to the fullest. If there is a trip out there and we can afford it, we have taken the opportunity. If the chance to have friends over to our house presents itself — even after a hard week of work — we take it. If someone asks me to help out or volunteer, I do it.

But, until now, I had not really considered what comes after the initial diagnosis of cancer. Well, a lot happens after that diagnosis, but before you really nail down the plan of attack.

First, the doctors need to know if that nasty cancer has spread — or metastasized — to other parts of your body. This is a critical piece of information for the doctor to be able to “stage” your cancer and figure out what to do next. What this means to the patient is that you get to take your fear and anxiety to the next level. Yes, believe it or not, the anxiety party gets to expand. Who knew?!

Suddenly, I found myself traveling to UC Davis Hospital every single day for one week to take a variety of tests and scans. Remember, this is all happening as our global pandemic starts to hit home hard. Everytime I walked into the hospital, I pumped some hand sanitizer in my hand, carefully sat on the edge of a chair away from everyone, touched nearly nothing (I am really, really good at pushing buttons and opening doors without my hands), and after getting into my car, wiped down my phone, purse, and hands. Every day, there were less and less people in the hospital. It was kind of creepy.

To figure out the severity of my cancer and inform the course of my treatment, my doctors ordered a bone scan, another ultrasound of my lymph nodes, blood work, and a CT exam of my chest and abdomen. When you have breast cancer, the most likely places for the cancer to show up after it starts in the breast are your lymph nodes, your bones, your lungs and/or your liver. So, every time you get a scan, you spend the next day or so thinking about the possibility of cancer showing up somewhere else. I have to say, the waiting SUCKS.

Before I tell you some funny stories about the scans, I will end the suspense (kind of). My bone scan and lymph node scan came up clean. Hooray! My CT exam showed something on the liver, but the radiologist and my doctors are currently assuming it is benign. I guess it is not terribly uncommon to have something show up on the liver, particularly for women. It may be something called an FNC, which happens to some women who take birth control. But, my oncologist has ordered an MRI “out of an abundance of caution.” At this point, I am assuming all is good because, frankly, I do not have the emotional bandwidth to freak out about much more at this point. If the MRI comes back to confirm that this is benign, I am just dealing with the cancer in my breast.

I want to make a note about what I just wrote: “just dealing with cancer in my breast.” Who knew a month ago that I would celebrate something like “just dealing with cancer in my breast?” But, that is the funny thing about getting this diagnosis. It totally changes how you look at things.

My first scan was the ultrasound of my lymph nodes. Honestly, I was more scared of the cancer showing up in my lymph nodes than anywhere else. When the radiologist got done wanding my armpit, I asked her how it looked. She said she couldn’t see anything. I wanted to hug and kiss her. I did not do either because (1) that would have been weird and (2) we are on coronavirus lockdown. I did tell her that was the best news I had received in weeks! She smiled at me and thanked me. It felt good. As for the MRI, I will have a party (alcohol free – more on that later) if it comes back clean. Well, I won’t really have a party because we are all in lockdown, but I might turn on some music and dance around the house like a maniac. (I’m open to playlist suggestions.) My point here is this: I am going to celebrate every little victory as they come. And, “just having the cancer in my breast” will be a mother-f#cking victory.

I don’t know if any of you have ever had some of the scans that I have had, but I never had most of these scans. Until this dumb diagnosis, I have been really lucky. I never broke a bone or had surgery. So, other than ultrasounds — of which I am well acquainted — the other tests are new to me.

The bone scan: This scan takes FOREVER. Well, actually, it only takes an hour. But, it just feels like forever. I did not realize how hard it is to lay in one place without moving for an HOUR. It also does not help that I have a touch of claustrophobia. Bone scans are painless other than the pain of having to be really, really still for 60 minutes. Since I am not a very chill-out kind of person and my anxiety level was running on high, it was hard to lay there without moving for so long. My mind was racing. So, what did I do? I sang “100 bottles of beer on the wall.” TWICE. I’m not kidding. I counted all of the states that I have legitimately visited (not counting airports): 39. I listed all 11 of the states that I still have to visit. I made a list of the countries I have been to: 14. I made a list of the countries I want to visit: A LOT. And, I still had time to count to 108 FIVE TIMES. Why 108? I like that number because it is the number of beads in a rosary and a mala. When the tech said I was done, I sprang out of that machine.

The CT Scan: Let me start by saying that a friend of mine who has had a number of CT scans very cryptically said to me (with a small smile on her face): “Let me know what you think?” I should have known that there was something funky about this scan. They tell you to drink a bunch of water before you take the scan. Being a 52 year old menopausal woman who has birthed two children, I was kind of worried about the whole full bladder and long scan time dilemma. Fortunately, the scan does not take that long. You lay down on a board in front of a large doughnut laying upright on its side. The tech puts an IV in your arm for the “contrast” liquid. The tech then arranges you to his or her satisfaction. At that point, my tech says: “OK. Here comes the contrast. You might feel a flush of warmth.” Being menopausal, I thought: “No biggie. I am used to hot flashes.” Let me just start by saying that he did not mean a hot flash. Instead, right after he left the room, I felt the warm flush. And, flush is the appropriate word. It felt just like I had peed in my pants. I kind of freaked out. As I have already mentioned my age and physical state, a full bladder while lying down is a little risky. I laid there thinking furiously about how I was going to determine if I had peed at the same time I am not supposed to move. Let me cut to the chase: I did not pee. It was just the feeling of the contrast hitting my bloodstream. As soon as I left the hospital, I called my friend and yelled at her (while laughing hysterically).

The next step after the scans is to meet with your oncologist. This is the doctor I will see the most for awhile. I really like my oncologist, Dr. Helen Chew. She is very direct and calm. She explained my treatment plan: 18 weeks of TCHP (see my previous post for what that stands for) followed by a month of recovery and then a double mastectomy. Depending on the outcome from the surgery — whether the cancer has been obliterated or not — the next steps will either be (a) moving on to reconstruction and continuing my HER2 infusions until March 2021 or (b) radiation/more chemotherapy. Right now, I’m just focusing on the current task at hand — the next 18 weeks of chemo. I’m sure I will write more about the whole “to reconstruct or not” question and also the decision to move forward with genetic testing, but this blog post is already getting too long.

Before I start chemotherapy, there are a few things I have had to address. First, do I get a port or not? This is the question of how the chemo drugs get “infused” into your body. Do you use your arm (through an IV or PIC line) or a “port” in your chest? I use the word “infused” because that is what they call what happens when you go to get your chemotherapy. You go to an Infusion Center to be infused. Seriously? When I first heard that term, I thought to myself: What, like I’m getting lavender scented toxic chemical dripped into my body? Will they have candles, dim lights and soothing music while spritz of sage and lavender waft through the air as I have slices of cucumber placed on my eyes and warm compresses on my forehead? It all sounds so soothing. While I have not had my first round of chemo, I am pretty confident that it is not like getting a massage.

Ok, back to the question of whether or not to get a port. I talked to a number of women who have received “infusions” and there is a clear division and some strong opinions both ways. I respect both opinions because I think it is a matter of personal preference. It is like the question of whether to give birth naturally or with drugs. I tried natural and ended up with drugs. That worked for me. I’m not judging the women who did the natural route and they shouldn’t judge me. For my infusions, I chose the port. What really swayed me was the fact that I am going to end up doing “infusions” for the next year because after the 18 weeks of chemo, I still get the HER2 drugs every three weeks for a year. I kind of want to save my arm veins.

I got my port one week ago today. It is surgically placed in the upper part of your chest on the opposite side of where the cancer is located. So, for me, my port is on my left side. This was my first surgical procedure. What I did not realize is that you are AWAKE for the whole thing. That freaked me out. However, I should not have worried because, as it turns out, I REALLY, REALLY like Verced. Once that magical mix of Fentanyl and Verced hit my system, I could have cared less what they did to me. When the surgeon told me that she would have to apply a bunch of pressure to do god knows what (I couldn’t see), my response was: “Knock yourself out. Have at it.” I am not joking here when I admit that at the end of the procedure, when the doctor said: “I’m all done and boy, I did a good job,” my thought was: “Great, but could you give me another hit of that Verced for the road.” I am not kidding. I honestly thought that.

I am not going to lie and say that I love my port. I do not. It feels so strange to have something bulging out of your chest (really, it is more like a small bump) and know that there is a line going into your artery (gag). Also, after the surgery, it felt like someone punched me hard in the chest. I’m healing up just fine so I should probably quit whining. But, while I don’t love my port right now, I am grateful for getting it. First, as another cancer survivor pointed out to me, this is the gateway for all those drugs that are going to kill my cancer. Second, if my port surgery had been scheduled one day later, it would not have happened. UCD Hospital stopped all elective surgeries — and getting a port is elective, believe it or not — the very next day! So, I’m grateful for just getting in there under the deadline.

My third reason for being grateful might be somewhat surprising to you because it was for me. While laying on that operating table, slightly cold and more than a little anxious (this is before the magic juice) while watching and listening to the pre-surgical prep, I was suddenly struck with an insight that I never expected. Let me give you a little background: When our daughter, Sam, was 12, she was diagnosed with a very aggressive form of scoliosis. It was fast moving and she had to have surgery on a large part of her upper spine. It was scary and she did great. (BTW, she has amazing posture!) But, my experience of it was from the perspective of the mother. Remember that I have never had surgery before. I really did not understand what it was like for her as a 12 year old to be ALONE in the operating room right before she was going to go into 7 hours of very difficult and scary surgery on her SPINE. I am not saying that I now have perfect insight into how she was feeling or what she was experiencing, but I have more insight and what I have discovered is that she was a BEAST. I always have said she is one of the bravest beings I know, but I now understand this on another level entirely. I got a little emotional laying there thinking about all of this — well, until they hit me with the magic juice and then I just c-h-i-l-l-e-d out listening to 80s music.

Besides getting my port, I also had to get an echocardiogram. Apparently, the drugs I have to take, particularly the HER2 drugs, can be hard on your heart muscle. So, they have to get a look at my heart to make sure that it is healthy enough to withstand my cancer cure. It is healthy — yay! One more thing for which to be grateful. I will have to go in for periodic scans to make sure it stays healthy. Chris and I also went to “chemo class” where we learned about ALL of the possible side effects of the drugs that I will be taking. Let’s just say that they are very thorough in their explanations. Upon our return home, Chris went to Walgreens and bought more medicinal stuff than we have ever had in our house. I’m going from taking Advil every now and then to a potpourri of drugs — drugs to kills the cancer and drugs to alleviate problems from the cancer-killing drugs. Whew. It is a lot to process.

Ironically, as I am preparing myself for the loads of drugs I am about to receive, I started reading up on how to take care of myself and reduce anything that could or might accelerate cancer. I have stopped drinking all alcohol and eating anything with sugar. I am loading up on cruciferous vegetables and cutting back on red meat. All of this has not been that difficult for me other than the strict no alcohol mandate. I keep thinking of the scenes from Airplane (a classic) in which Lloyd Bridges says at random moments, “Looks like I picked the wrong week to stop sniffing glue. Looks like I picked the wrong week to quit drinking. Looks like I picked the wrong week to quit smoking. Looks like I picked the wrong week to quit amphetamines.” I have to say that in the midst of this global pandemic, it looks like I pick the wrong week to skip having a beer or a glass of wine or a rye manhattan (mmmmmm . . . a rye manhattan).

Finally, as you already can tell from the picture above, I cut my hair in preparation for the real possibility that I am going to be bald soon. I had been growing out my hair. I don’t know why I had it so long because it was kind of a pain. But, I am glad it was so long. I was able to get an 11 inch braid from it and have donated it to Locks of Love. If you did not know about Locks of Love, it is a non-profit organization that makes wigs out of human hair for children who have lost their hair or don’t have hair. It makes me feel good to know that there might be a child or children who will benefit from my donation. I can only imagine what it might be like to be a kid without hair. As it is, I am trying to imagine what it might be like to be a 52 year old woman without hair. While I am not terribly vain, I am a little vain about my hair as I think it is my best feature. With that said, I certainly am less prone to caring about what my peers think about my appearance than a child or adolescent. So, if this cancer diagnosis can result in a good thing for a child, I am going for it. Check them out if you want: https://locksoflove.org/

So, here I am – port in, dry as the Sahara Desert, armed with info and a full medicine cabinet, short hair, and most of my test results. I start my first “infusion” on April 1st — how funny is that. April Fools! I get my second “infusion” on Earth Day. Seriously? All joking aside, I am ready. Let’s get this show on the road.