I am the Neutrophil Queen (& WTH is Immunotherapy Anyway)

This week's labs (CBC, or complete Blood Count) report came back from this morning's blood draw, and my neutrophil count actually increased! I am up to a 1.89 from a 1.68. This is surprising because the chemo drugs that I am taking (Taxol and Carbo) are supposed to guarantee a drop in neutrophils (which are a type-- one of four-- of white blood cell, and help prevent infection. Infection is not a good thing for me.). Since the chemo wipes cells out indiscriminately, bad or good, because it cannot differentiate between them, it is expected that they will inevitably drop. [I am not a medical professional and so I know I am likely missing important details but hopefully am catching the gist... please bear with me if you are more knowledgable than I am.]

Since my counts are still above 1.5, chemo tomorrow is a go. If they had dropped, I would have had my chemo pushed back a week and would have instead started a neutrophil booster. If you read my earlier post about this, a possible side effect from the booster is bone pain (or ache). Luckily, since I do not have to have the booster this week, that means one less booster overall during the course of my treatment. It is, however, inevitable that I will have the neutrophil booster. It's okay. It's going to be all right.

Since I am going to have chemo tomorrow, and it will be the third week, that means I will also receive immunotherapy (pembro or Keytruda) or the saline solution placebo, as part of the clinical therapy trial I am participating in. Here is a review of immunotherapy and my trial:
It is a 2 to 1 chance that I am receiving immunotherapy. My trial is in Phase 3, which means it has had positive results in its first two phases. My non-medical explanation of immunotherapy is as follows: immunotherapy is some of the most groundbreaking research in cancer treatment in recent history, and is blowing researchers and the medical community away with its results. It works with the body's immune system to identify, target, and kill cancer cells. My immunotherapy is the type that works with the immune checkpoint inhibitors, and has already been approved for other cancers such as melanoma (and a few others). Former President Jimmy Carter reportedly was treated by the immunotherapy that I might be receiving. The really kickass thing for me is that while Triple Negative Breast Cancer makes it so that there are some types of treatments (namely, hormonal) that do not work for me, immunotherapy puts a big one back on the table.

Here is more about immunotherapy if you are interested.

The Awkward Newbie (My First Lab)

This morning I go in for labs, which is the blood work that needs to be done the morning prior to receiving each chemo infusion. These lab tests monitor my complete blood count (CBC); for white blood cells (WBC), red blood cells (RBC), and platelets; as well as my metabolic panel, which measures kidney and liver function and electrolyte levels.
I have had one lab experience so far, when I went in last week as a prerequisite to admission to the immunotherapy clinical trial. Allow me to regale you with my awkward newbie tale:

Arrive to Lab location with more than five minutes to spare (always a win to arrive early! Avoiding unnecessary anxiety is important.) Check in with very nice and upbeat front desk human, who clearly knows everyone as he greets several individual patients by name, and asks me if this is my first time being there. "Yes," I say, smiling. I sign in and pay my co-pay.
He directs me where to sign in and asks me to take a seat and wait for my name to be called. As a newbie, I head directly to a chair next to a boombox. I love music. How nice.
Very quickly I remember that boomboxes have terrible sound quality. I then realize that all of the other people waiting to be called for their labs have chosen chairs that are nowhere near this cacophony. I think, ah, yes, wise pros... I consider moving seats but decide to wait it out. I am sure I will be called soon.
Twenty minutes go by, people arrive, sign in, and are called. They depart. I continue to wait to hear my name. Employees walk by with their lunches that smell delicious.
Suddenly I realize this boombox has begun to blast Clapton's "Tears in Heaven." I freeze, wondering if I am hearing correctly. (Of course I am, because music.) I then look around wild-eyed to see if anyone else has noticed, but no one meets my gaze. I am awkward so I laugh a little to myself. Eric continues to sing, "Because I know, there'll be no more... tears in heaven."
Fight or flight starts to set in, and when the next person is called and vacates her seat at the end of the row, I bolt for it. It is the farthest away from the bleating boombox. I text John, "Poor soundtrack choices here."
"PATRICIA WELT." A woman, presumably a nurse, is in the entryway.
I say, "Wel-TEE." She says something that sounds closer to this and everyone in the waiting room stares as I bebop my way over to her. (Note: I do understand why my last name is mispronounced and I am not angry about it, but I will correct you if I know we are going to be interacting more than once.) We walk to her station, she asks me my name and birthdate, punches keys on her keyboard, furrows her brow. Since I know I am there to have blood removed from my body, I push up my sleeve and bare it towards her. She swabs it with alcohol, inserts needle, and busies herself with her computer. She makes some frustrated noises at it, so I break the silence (because she did not speak a word to me this entire time. Zero explanation of what she was doing, who she was, what I was expected to do. Nothing.) by asking if she is having computer problems. She nods in the affirmative, clearly exasperated.
My blood is filling up a vial. I look down to my immediate right and see a large biohazard bin of used needles and other gross items. I wonder if that is all from today? I consider asking her, but then decide that I really do not want to know the answer.
The vial is full. She removes it and tells me to hold the gauze on the location tightly as she applies labels. Next she hands me a container and stares at me. I stare back blankly. She says, "I'll need a urine sample. Do you know where the bathroom is?" I do not.
I say, "It's my first time here. I don't know where anything is." She tells me where to go, shouting behind me when I mistakenly turn right too early. I have to walk through the waiting room to reach the bathroom. Everyone stares again and I bebop past them. I smile. I do as I am told and return it to the nurse and take my seat next to her. She is frowning at the computer again. The nurse across from us also appears frustrated about her computer.
"Oh, so this is all computers that are giving you trouble today!" I attempt conversation once more.
"Yes," she says. "We are grieving. We need grief counseling!" She laughs. I awkwardly laugh back, perplexed. I cannot wait to get out of here.
Eventually I realize that she is staring at me. She asks if I know where I am supposed to go next (I do not). She directs me back to the very friendly front desk person who will help me out, and he does.

Suffice to say that right now I am pretty pumped to be heading out the door for today's labs. I am more seasoned now, my friends. I have headphones.

Addendum: Later that day I shared this story with my sister-in-law, K., who asked if they used the chemo port to draw the blood samples. I said, "No. And I didn't want that lady to take my chemo port-virginity, anyway!" Truth. I did not.

Update: Today's labs were much more efficient and I was greeted warmly by the nurse. The music, however, was Clapton again (thankfully could not hear which song since I was clear across the room). John has offered to make them a mixed tape. 

Preparing for Life with Chemo

With my treatment plan now set (starting on Friday!), I have been spending most of my time prepping for life with chemo. I thought I would share with you some of these, in case you are interested in what I have been up to since blasting my news to the world.

My preparation has been guided by what I have curated from Chemo Class (an actual class one is required to attend in order to begin chemo, where you learn about how toxic you are after being infused with powerful drugs), by various booklets, books, and (trusted) websites, from survivor friends' blogs (thank you lady K.!), and from my own personal preferences.

Research all of the things.
When I start something new, I tend to fully immerse myself. I want to know everything about the topic. (Yes, it can cause overwhelm.) In this case, it is helping me to accept that I have cancer and to identify as someone who is now doing the things that people who have cancer must do. This includes:

• Buy all of the books (and even a DVD!).
• Attend Chemo Class (as previously mentioned).
• Talk to all of the people. 
• What was their experience like? What resources did they find helpful? How did it impact their daily lives? Their professional lives? How does it impact them today? 
•  A huge amount of gratitude for the survivor friends who have contacted me and offered themselves as resources, and to those with friends who have connected me to their survivor friends. I am (somewhat slowly) reaching out, and I so appreciate all of these incredible connections.

Have medical port put in.

Did you know that I have already had a minor surgery? Yes, I had to have a medical port, aka chemo port, aka Power Port (actual brand name) inserted into my chest. This was my first surgery EVER, and thankfully it was not that big of a deal overall. Dr. V. performed the surgery, thus formalizing our professional relationship. It was explained to me (something) like this: "I will be inserting this plastic device into your chest, under your clavicle. I will make an incision, then make room for it, and check the vein nearby to ensure that it can be used. I will also check your heart and your lungs while I have you open. The operation will take about 30 minutes. You will have some anesthesia so you will be out for the surgery. You will not be able to drive afterwards." I am obviously paraphrasing, but these were the major points. In addition to having my first surgery, I also was wheeled out of the hospital in a wheelchair-- another first (thinking of you, Sime). 

This device (pictured below) is for the chemo infusions; they will use this instead of arm veins. It is a small plastic piece with an opaque, softer plastic middle, which is where needles/IVs will be inserted each time. If you see me IRL, feel free to ask to view it; I am a small person so it is pretty visible, and I have a small surgical incision scar located right above it. At this point in post-surgery healing, I barely notice that it is there, and I can even easily do yoga postures that include chest-openers.

My heart and lungs looked great, by the way.

Picture of a (pretty purple) Power Port. 

Tests, tests, tests.

So many tests. 

Breast MRI: Helpful tool for gathering further information about the tumor and its size. 

This was by far the most undignified test of them all, as I went in thinking, "Oh, MRI NBD I just lay down and then inserted into a tube and then listen to a lot of noises and try to breathe/not panic." Mostly accurate except that I had to lie down in a prone position, with breasts hanging down in between two slots. (Hey, sorry but I did warn in my first post that I would be talking about breasts here.) It was so rude. The indignities. And that was my Saturday morning! 

CT & Bone Scans: Fairly straightforward, simply drink chalky, berry-flavored barium drink at proper time (thanks to John I got this mostly accurate). Arrive at bone scan location, receive injection of radiation, promise to return in three hours. Drive to the next location, receive CT scan. Eat some lunch, return to bone scan place for (you guessed it) my bone scan. These tests were necessary to determine if the cancer had spread to a second location (verdict: it has not, which is a huge win). 

ECHO: From WebMd: "An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart." My test was the Doppler. The technician, Todd, was really great and I like that he explained everything to me. He told me that I have a good heart and that the test results would likely reflect that (they did). He also made a few jokes that were funny, even though I knew he uses them on everyone. "Now I'm going to take a look at your liver to see what's left." (He used to work near a college campus and this one apparently freaked out all of the college students.) He also gave me an ultrasound picture of my heart and said, "Here's a picture of your heart, so now you have proof if anyone accuses you of not having one." All delivered deadpan, which is the best humor, in my opinion. Thank you, Todd! 

I have a heart! And it is a good one. (Note: this is NOT my uterus.)

ECG: From WebMd: A doctor may suggest "an electrocardiogram -- also called an EKG or ECG -- to check for signs of heart disease. It's a test that records the electrical activity of your ticker through small electrode patches that a technician attaches to the skin of your chest, arms, and legs." It literally took longer to set up than to administer this test. It turns out I do have a very good heart; my resting heart rate is low (high 50s), although now that I think back on it, Researcher S. did not actually tell me the rate that day. Anyway, she did show me the graph and it all seemed lovely. (I am not a trained scientist, and I am aware that my descriptions here betray this, and I am okay with that.) 

Genetic. I spit kind of a lot of saliva into a vial that they sent away to a lab. I was told that insurance will definitely cover my test on account of me being so young and having cancer. The results came back early this week and indicated that, as far as they know with the research at this point in time, this is not an inherited gene. Therefore there is not a concern for my mother, sister, aunts, cousins, etc. to be tested, but they should keep up with mammograms and should speak with their obgyns. 

Make hair decisions.  

As you are aware, I've chopped 10 inches off my hair and currently have a pixie. I got to this decision quickly, but I had an in-between bob for a few days that I just could not embrace, no matter how many times I compared it to Jackie O. 

Other decisions that needed to be made included whether or not to attempt to save my hair via cold cap technology. If you have not heard of this, the gist is that you have a cap that is kept at a certain temperature that is placed over your head/hair for a bit before chemo, during chemo, and for a few hours following chemo. The upkeep is not light, as you have to switch out the cap for a new cold one every 30 minutes, as it cannot drop below that certain specific temperature. I decided to forgo this option due to its high maintenance, the fact that it is not covered by insurance, and it's success rate is around 50%. Seems like a great deal of trouble for it to not work out. Meh. Here is more info on one kind of cold cap, if you are interested in learning more. 

Thus, I am going for a wig (or two), with some trusty hats and beautiful scarves as additional options. My lovely mermaid stylist, Trinity, has spearheaded (ha, so many head puns) the effort to procure a wig and to style it for me. She has been my friend and stylist for about a decade, and I am so lucky she is on this case. In terms of going and being bald, I was told that it will take a few weeks before I notice anything (and people, I have a LOT of thick hair), so we shall see when it actually becomes unsightly. I am hopeful that Phase II of chemo will be lighter and regrowth will begin. If anyone would like to start a pool for the date I will need to shave it, let me know (being somewhat serious here, because I need to laugh at cancer on occasion. For me, it is appropriate)!

Buy anti-bacterial and disinfectant everything. 

Also known as "spend all of your money at Target." I purchased disinfectant wipes, anti-bacterial soaps for every purse and bag, tons of bathroom cleaners; you name it, I have now disinfected it. One of the medical professionals that I am in touch with regularly (I will refer to her as Researcher S.) said, "You know those people that wipe down their grocery carts and put anti-bacterial soap on all of the time? That's you now." So, okay cool. I can do that. 

Salon manicure/pedicure.

Well this is clearly optional, but you might be aware that I am a very major fan of having my nails done, preferably with a gel manicure from a salon. I have learned that I must give up any nail salon visits during chemo treatment, so as to avoid infection. I can, however, paint my nails with regular polish, and they even recommended the Sally Hansen Hard as Nails line. It will help keep my nails strong (thank you J. for the nail polish!).

Fill prescriptions. 

So far there are just three prescriptions; one for a lidocaine cream to be applied to the site of the chemo port about half an hour before going to my chemo appointment, and two anti-nausea medications (compazine to start with, ativan if more is needed). 

I also needed to buy medications for gastrointestinal concerns, which I prefer to preempt as much as possible by eating healthy, using known natural options (think: prune juice), and supplements. 

Regarding supplements, I have been okayed for the use of: a Vitamin B complex, Vitamin D, multivitamin, turmeric, and L-glutamine (may help prevent neuropathy, or numbness in fingers and toes that is a potential long-lasting side effect of chemo).

Prepare batches of food to freeze.
My sweet and loving husband bought me an Instant Pot, which if you are not aware, is a device that is essentially a kitchen swiss army knife. Namely, it cooks things super fast, which I very much appreciate. I have successfully made a batch of veggie Bolognese (featured in this previous post), which I put into smaller containers to freeze for use on days when I am not interested in cooking (lo, this turns out to be most days, and I have not yet begun treatment). UPDATE: I somehow failed to mention earlier the batch of pesto that my mom made me while she visited recently, which is actually better than the veggie Bolognese. Thank you, Mom!

I also learned in Chemo Class that I should avoid eating my favorite foods during treatment, as it will change my relationship to those foods. This presents a kind of dilemma, right? So I am to eat the foods I do not like? No. 

I will keep you posted, dear reader.

Visit the dentist.
Due to working on three campaigns in the past year, I have to fess up that I was a few months past my time for my dental checkup and cleaning, and it turns out this is pretty critical thing to have done before starting chemo. This is because chemo goes after the rapidly-dividing cells in your body and does not differentiate between the ones you need (mouth, hair, nails) and the ones you are working to eradicate (cancer cells). Therefore mouth health is now quite elevated, with avoidance of bacteria as a primary goal.
Given that we just moved, I had to find a new dentist; and given that this has been moving very quickly, I felt some pressure to make it happen right away. Luckily, my in-laws had a great recommendation very close by who also took our insurance and was able to get me in that week (albeit at 7:30am. I did not complain, however). I also count myself lucky because I have fairly amazing teeth and I was thrilled to announce to everyone that while it may be true that I have cancer, I sure as hell do not have any cavities!

Prepare my chemo bag.
Thank amazing family and friends, I am heading into my first chemo appointment incredibly prepared. I have cozy clothing, an incredibly soft comforter, gentle lotion, lip balm, warm socks, soothing ginger chews and peppermint tea, and a few current fashion magazines. I am going to show up to this appointment like the proud newbie cancer patient that I am, fully armed with comfort and the love and support of all of you. Thank you. 🙏

This is definitely going to keep me warm in the chilly chemo room!